Table of Contents

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139

147

153

110

119

131

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Pensar Enfermagem

Data Sheet

Editorial

Original Articles

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a community nursing intervention

Self-care capacity of Portuguese elderly people living at home

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Training hypocoagulated users and their families in disease management:

a community nursing intervention

Experiences of the hospitalization process: perspective of people admitted

to the medical clinic

Review articles

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Internet as a source of information and health literacy in pregnancy: a scoping

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Theoretical Articles

Social skills of primary care nurses and the communicative action of Jürgen

Habermas

Advanced Nursing: remembering the past, appreciating the present and pers-

pecting the future

Unitary Caring Science: Caritas Compassion Transpersonal Theory

106

2 |

Data Sheet

DATA SHEET

Pensar Enfermagem

Volume 27 N.01 | janeiro 2023

Director:

Andreia Silva da Costa

Chief Editor:

Paulo Seabra

Editorial Team

Chief Editor:

Paulo Seabra

Adjunct Editors:

Florinda Galinha de Sá

Helga Rafael Henriques

Pedro Lucas

Associated Editors:

Adam Searby (Deakin University School of Nursing

and Midwifery, Melbourne, Australia)

Idevania G. Costa (School of Nursing, Lakehead

University, Thunder Bay, Ontario, Canada)

Ivone Cabral (Faculdade de Enfermagem da Uni-

versidade do Estado do Rio de Janeiro)

Luís Sousa (Universidade Atlântica - Escola Supe-

rior de Saúde Atlântica, Portugal)

Marcelle Miranda da Silva (Escola de Enfermagem

Anna Nery, Universidade Federal do Rio de Janei-

ro)

Rita Catalina Aquino Caregnato (Universidade Fe-

deral de Ciências da Saúde de Porto Alegre - UFCS-

PA, Brasil)

Sara Franco-Correia (Universidade de Oviedo, Es-

panha)

Property:

Escola Superior de Enfermagem de Lisboa

Centro de Investigação, Inovação e Desenvolvi-

mento em Enfermagem de Lisboa

Avenida Prof. Egas Moniz

1600 - 190 Lisboa

+351 217 913 400

revistapensarenfermagem@esel.pt

URL: pensarenfermagem.esel.pt

Legal Deposit:

106591/97

eISSN:

1647-5526

Graphic and editorial design:

Carolina Rodrigues

Development and maintenance

of the Platform:

OJS/PKP

Carolina Rodrigues

Diogo Marques

Márcia Pereira

Frequency:

Rolling pass publication - Anual

DOI assignment:

Crossref.org

| 3

Pensar Enfermagem / v.27 n.01 / December 2023

DOI: 10.56732/pensarenf.v27i1.319

Editorial

How to cite this article: Seabra P. Self-Management of Health Status: Challenges Ahead. Pensar Enf

[Internet]. 202

3 Dec; 27(1): 3-4. Available from: https://doi.org/10.56732/pensarenf.v27i1.319

EDITORIAL

Self-Management of Health Status: Challenges

Ahead

The capacity for self-care is recognized by the World Health Organization (WHO) as the

basis of healthcare. Self-care is interconnected with the physical, psychological, emotional,

and spiritual dimensions, and also with self-knowledge and well-being. Self-care is closely

linked to personal balance throughout the life cycle and is at the heart of people's lives.

Acknowledging this, WHO considers interventions to promote self-care as within the

scope of health promotion interventions, since they have the potential to increase choice

and provide more opportunities for individuals to make informed decisions about their

health and healthcare. Those interventions must be accessible and affordable by

indviduals.1

Self-care interventions can be sorted into three levels: Self-knowledge (self-help, self-

education, self-regulation, self-efficacy, self-determination); Self-assessment (self-selection,

self-screening, self-diagnosis, self-collection, self-monitoring); and Self-management (self-

medication, self-treatment, self-examination, self-injection, self-administration, self-use),1

which is recognized as the one having the greatest potential for personal well-being.

Self-management of health in chronic disease encompasses 3 dimensions. The first

concerns the Person, considering that the person must actively participate and take

responsibility in the care process and have a positive way of facing adversity. The second

concerns the Person's Relationship with the Care Environment, recognizing that people

must be informed about their condition and treatment, must be able to express their needs,

priorities, and values, in an environment of partnership and openness to social support, and

its self-management process must be individualized. Finally, the third-dimension states Self-

Management as an Activity, considering that it is a lifelong task that requires personal skills

(namely, decision-making and problem-solving) and covers both management of health

and emotions.2 As chronic disease conditions are related to lifestyles, many times the first

step towards change is often the most difficult, as it includes awareness of the problem,

mobilization of internal resources and decision-making that “may need” the support of a

health provider. This is where Nursing care can be decisive, as self-care interventions or

self-management training, when provided in a safe and supportive environment, offer an

opportunity to increase people's active participation in their own health, increase

functionality and improve quality of life.3,4

Behavior change is one of the most difficult decisions and actions to begin and maintain,

which is why research into self-care and empowerment for self-management of health still

on the international research agenda.5 Now is the time for action and empowerment, and

the world's population expects to rely on all health providers, half of which are 28 million

nurses worldwide. These professionals need to be able to deal with the unpredictability of

the person “with whom” they are caring of, have the ability to accept their choices, even

when they include health-risk behaviors, and to accept that the power lies with each person.

Person-centered care is not real if the person is not truly involved in planning and making

decisions or whenever their wishes and expectations, even if harmful, are not respected. A

lot is asked to these professionals these days, but the potential of their workforce is also

threatened by multiple factors: the shortage of health professionals pointed out by different

international organizations; the attempt to generalize and downgrade the training of nurses

in several countries around the world as a way of reducing costs, depriving people of being

cared by differentiated nurses; the decrease of health training in higher education; and the

disinvestment in national health systems, benefiting private services that do not invest on

health promotion strategies, including self-care interventions.

Research in this area can make a decisive contribution to both people and health

professionals, empowering them to enable and respect rights and choices, but it needs to

integrate both lived experiences into the development of evidence-based and person-

centered interventions.

Paulo Seabra1

orcid.org/0000-0001-8296-1021

1 Editor-in-Chief. Nursing School of Lisbon (ESEL),

Lisbon;

Nursing Research, Innovation and

Development Centre of Lisbon (CIDNUR), Lisbon,

Portugal.

Corresponding author:

Paulo Seabra

E-mail: pauloseabra@esel.pt

.2024

4 | Seabra, P.

Editorial

This Journal’s contribution is minor, but Self-Management

of Health was the most published topic on this issue nr. 27.

References

1. World Health Organization. WHO consolidated guideline

on self-care interventions for health: sexual and

reproductive health and rights. Geneva: World health

Organization; 2019

2. Van de Velde D, De Zutter F, Satink T, Costa U, Janquart

S, Senn D, De Vriendt P. Delineating the concept of self-

management in chronic conditions: a concept analysis. BMJ

Open [Internet]; 2019 Jul 16 [cited 2024 jan 31];

9(7):e027775. Available from:

https://pubmed.ncbi.nlm.nih.gov/31315862/

3. van Schie D, Castelein S, van der Bijl J, Meijburg R,

Stringer B, van Meijel B. Systematic review of self-

management in patients with schizophrenia: psychometric

assessment of tools, levels of self-management and

associated factors. J Adv Nurs. [Internet] 2016 Nov [cited

2024 jan 08]; 72(11):2598-2611. Available from:

https://pubmed.ncbi.nlm.nih.gov/27200500/

4. Liu Y-Y, Li Y-J, Lu H-B, Song C-Y, Yang T-T, Xie J.

Effectiveness of internet-based self-management

interventions on pulmonary function in patients with

chronic obstructive pulmonary disease: A systematic review

and meta-analysis. J Adv Nurs [Internet] 2023 [cited 2024

jan 10]; 79, 2802–2814. Available from:

https://onlinelibrary.wiley.com/doi/10.1111/jan.15693

5. Gauthier-Beaupré A., Kuziemsky C., Battistini B.J. et al.

Evolution of public health policy on healthcare self-

management: the case of Ontario, Canada. BMC Health

Serv Res [Internet] 2023 [cited 2024 jan 25]; 23; 248.

Available from:

https://bmchealthservres.biomedcentral.com/articles/10.1

186/s12913-023-09191-3 https://doi.org/10.1186/s12913-

023-09191-3

| 5

Pensar Enfermagem / v.27 n.01 / march 2023

DOI: 10.56732/pensarenf.v27i1.200

Review article

Como citar este artigo: Sousa F P, Curado M A S. Barreiras que influenciam as atitudes dos enfermeiros

face aos cuidados paliativos na unidade de cuidados intensivos neonatais: revisão scoping. Pensar Enf

[Internet]. 202

3 Mar; 27(1):5-15. Available from: https://doi.org/10.56732/pensarenf.v27i1.200

Barriers influencing nurses’ attitudes towards

palliative care in the neonatal intensive care unit: a

scoping review

Abstract

Objectives

To identify the barriers that influence nurses' attitudes towards palliative care in the neonatal

intensive care unit.

Background

Neonatal nurses play a crucial role in caring for the newborn suffering from a complex

chronic illness or who is at the end of life and needs palliative care. In the neonatal intensive

care unit, the implementation of palliative care is inconsistent due to the existence of barriers

that influence nurses' attitudes when faced with the need to make decisions related to

newborns’ end-of-life or the suspension of curative treatments.

Methods

Following the methodology designated by the Joanna Briggs Institute and the PRISMA-ScR

as a complementary checklist, this scoping review was conducted in three phases and 10

databases were searched for relevant primary research studies, systematic reviews and meta-

analyses, in English, Portuguese, French, and Spanish from 2016 to 2021. The data obtained

through the extraction process were gathered in a table, and included the study

characteristics, the population involved, the key findings related to the barriers influencing

the nurses' attitudes towards the provision of palliative care in the neonatal unit and the

instruments used to assess those attitudes.

Results

Sixteen studies met the inclusion criteria. The main barriers identified by the studies are

related to the absence of training in palliative care, difficulty in communication with parents

and between health professionals, and the absence of policies related to the provision of

neonatal palliative care. The semi-structured interview has been the most common and

widely used instrument for qualitative studies. Questionnaires were selected for quantitative

studies, with the NiPCAS being the most commonly used in the NICU.

Conclusion

The barriers influencing nurses' attitudes towards the implementation of neonatal palliative

care are identified by the scientific literature, however care remains inconsistent. The

definition of training strategies and organizational policies can reduce the impact of barriers

faced by neonatal nurses in the provision of palliative care.

Keywords

Attitudes; Barriers; Intensive Care Unit; Neonatal; Nurse; Palliative Care.

Fátima Pacheco de Sousa1

orcid.org/0000-0002-6577-4344

Maria Alice dos Santos Curado2

orcid.org/0000-0002-9942-7623

1MSN, RN. North Lisbon University Hospital Centre,

Santa Maria Hospital, Neonatal Intensive Care Unit.

Nursing Research, Innovation and Development

Centre of Lisbon (CIDNUR).

2PHD, MSC, RN. Nursing Research, Innovation and

Development Centre of Lisbon (CIDNUR).

Corresponding Author

Fátima Pacheco Sousa

E-mail: fatimasousa@campus.esel.pt

Received: 02.08.2022

Accepted: 22.12.2022

6 | Sousa, F.

Review article

Background

The survival of premature newborns at the limit of viability

and other newborn with very serious pathology is due to the

evolution of technical and scientific knowledge in the field

of Neonatology. However, if survival rates are higher, the

potential for well-being and a healthy life decreases due to

morbidity, disability and complex chronic diseases (CCD)

leading to unpredictable levels of health difficult to manage,

which may influence the newborn development in the short,

medium and long term.1

Palliative care (PC) needs in the neonatal population are

mainly important in situations of pre or postnatal diagnosis

of life-limiting and/or life-threatening conditions (e.g.

bilateral renal agenesis, anencephaly, trisomy 13 and 18…),

when there is a high risk of morbidity or death (e.g., severe

bilateral hydronephrosis, hypoplastic left heart syndrome,

neurological disease…), when newborns are at the threshold

of viability (22-23 weeks’ gestational age), postnatal

situations with high risk of sequelae and compromised

quality of life (e.g., severe hypoxic-ischemic encephalopathy,

severe peri-intraventricular haemorrhage), or postnatal

situations causing great suffering and no possibility of cure

(e.g., severe necrotizing enterocolitis) or no cure.2 Thus, in

the context of neonatal intensive care, it is necessary for

health professionals, specifically nurses, to develop skills in

palliative care (PC) in order to support the newborn and

his/her family3,4 by providing holistic, active, and total

family-centred care from diagnosis, throughout the

newborn life, at death, and beyond. Neonatal palliative care

(NPC) encompasses physical, emotional, developmental,

social and spiritual elements, and focuses on enhancing the

newborn quality of life and supporting the whole family,

including management of distressing symptoms, end-of-life

care and bereavement support.5

The decision to initiate PC to the newborn should involve

the multidisciplinary team and consider the relevant facts

related to the newborn clinical situation, the opinion of

caregivers, including parents, and, if necessary, the opinion

of an PC expert team and the Ethics Committee.6

The literature and practice show that the implementation of

NPC is inconsistent7–9, often due to the emotional distress

and ethical dilemmas that nurses experience when faced

with the need to make decisions related to the newborn end-

of-life or the suspension of curative treatments.4,10 The

assessment of neonatal nurses' attitudes toward the

implementation of NPC has been carried out through

instruments that enabled researchers to identify barriers to

the provision of NPC.3,11,12 Some of those barriers include

human resources with inadequate ratios and lack of training

in PC, an unfavourable physical environment, technological

imperatives, difficulty in communication between team

members and with parents, and unrealistic parental

expectations.

The use of instruments highlights the impact that nurses'

attitudes may have on the provision of palliative care for

newborns, and enable the implementation of policies that

help health professionals make consistent and holistic

decisions in a constant search for improved quality of care.

A preliminary search conducted in the Joanna Briggs

Institute Database of Systematic Reviews and

Implementation Reports, Cochrane Library, MEDLINE

and CINAHL, did not identify a scoping review on this

topic. Scoping reviews aim to map the main concepts that

underpin an area of research and the main sources and types

of evidence available.13,14 Therefore, this approach was

considered a useful way to map and examine the scientific

evidence on the barriers influencing nurses' attitudes

towards PC in NICU.

Aim

The aim of this scoping review is to identify and map the

literature about the barriers that influence nurses' attitudes

towards palliative care in neonatology.

This scoping review will focus specifically on the following

questions:

What are the barriers that influence nurses' attitudes towards

palliative care in neonatology?

What instruments have been used to assess nurses’ attitudes

toward palliative care in neonatology?

Methods

The scoping review strategy followed the recommendations

of the Joanna Briggs Institute (JBI) methodology, namely,

identification of research objective/s and question/s,

developing the inclusion criteria, searching for the evidence,

evidence selection, evidence extraction, analysis of the

evidence, presentation of the results, summarizing and

reporting results.14,15 The Covidence® software and the

Preferred Reporting Items for Systematic Reviews extension

for Scoping Reviews (PRISMA-ScR) reporting guideline

and checklist16 were used to support data management.

Assessment of methodological limitations or risk of bias of

the evidence included within this scoping review was not

performed because it is not generally recommended in

scoping reviews.14 This study is registered in the Open

Science Framework: osf.io/phcm7

Search Strategy

The search considered studies written in Portuguese,

English, French and Spanish, published between 2016 and

2021. All scientific articles addressing the study objective of

a quantitative, qualitative or mixed nature, and those

unpublished (grey literature) were included.

In a first stage the search was limited to four databases,

namely CINAHL Complete, MEDLINE Complete,

COCHRANE Database of Systematic Reviews (via

EBSCOhost), and Joanna Briggs Institute EBP Database via

OVID, whereby analysing the words contained in the title

and abstract of the studies, the indexing terms (MeSH 2020

descriptors and keywords) were identified. The second stage

was carried out in the databases referred to in the first stage,

as well as Academic Search Complete (via EBSCOhost), b-

on, BioMed Central, Science Direct for Elsevier

publications, PubMed, Scopus, and Biblioteca Virtual da

Pensar Enfermagem / v.27 n.01 / march 2023 | 7

DOI: 10.56732/pensarenf.v27i1.200

Review article

Saúde. In a third stage, the references of the identified

documents were analysed in order to identify some

additional bibliography. The literature search included the

following combination of MeSH headings and Keywords

searching: ((“barriers”) AND (“nurse” OR “nurses” OR

“nursing”) AND ((MM “palliative care”) OR (“end of life”))

AND ((MM “neonatal intensive care unit”) OR (“NICU”))).

The CINAHL Headings descriptors used were ((“barriers”)

AND (MH”nurses+”) AND ((MM “palliative care”) OR

(“end of life”)) AND ((MM”intensive care units, Neonatal”)

OR (“NICU”))).

Eligibility

The eligibility criteria are described in table 1.

After the identification of the relevant studies, they were

imported into the Covidence® software. Duplicates were

removed using this software and, after applying the

inclusion and exclusion criteria, the studies were screened,

first by analysing the title and abstract, and, in a second

phase, by reading the full text. The process of study selection

and data extraction was independently performed by two

reviewers and with a third reviewer who intervened

whenever a conflict arose in the selection of studies.

Table 1 – Eligibility Criteria

Eligibility criteria

Inclusion Criteria

Exclusion Criteria

All studies in which the participants are nurses who provide care in the

NICU.

All studies whose focus of interest is not on neonatal nurses.

All studies whose participants include healthcare professionals other than

neonatal nurses.

All studies whose phenomenon of interest is related to the barriers,

challenges or any impediments influencing nurses' attitudes towards PC in

the NICU.

Studies exploring attitudes, perceptions, and experiences of neonatal

nurses in relation to NPC.

All studies developed at the NICU, regardless of their level of

differentiation or complexity.

All studies whose context of care is not the NICU, such as in the Paediatric

Intensive Care Unit or Hospices

Studies in English, Portuguese, French, and Spanish from 2016 to 2021.

Data extraction and synthesis

Following the JBI methodological guidance for scoping

reviews on the data extraction instrument15, at the protocol

stage the authors developed a charting table to register the

information of the records, specifically the authors, country

where the study was developed, year, title, aims,

methodology and topics that would provide answers to

PCC. Once the data extraction table was completed, the

main key findings were extracted in a synthesis table (Table

2). This table contains the participants, the context, and the

barriers identified as those influencing nurses' attitudes

toward palliative care in the NICU and the instruments

used by the authors to assess these attitudes. The data

extraction was performed by one reviewer, and a second one

verified the extracted data. Where there was a conflict, a

third reviewer intervened to ensure that the data extraction

remained consistent with the objective and questions

outlined. A word cloud was generated in order to extract the

most relevant topics from the studies, and a narrative

analysis was performed.

Table 2 - Synthesis table with key fidings of the studies included in the review (n=16)

1st Author

Studies

Participants

Context

Barriers

Instruments

Parents Nurses Health Institution

Razeq, N.

2019/Jordan

Quantitative

Nurses (n=289)

NICU

Difficulty in

interpreting Parents'

attitudes

Insufficient time to make

decisions; difficulty in

establishing a prognosis

Lack of policies;

conflicts between NICU

policies and those of

each professional

Parents' information

and ethical decision

making in neonatal

intensive care units:

staff attitudes and

opinions

Forouzi, M.

2017/Iran

Quantitative

Nurses (n=57)

NICU

----------

Inappropriate

nurse/newborn ratio;

absence

of PC training

Inadequate environment;

absence of protocols

Neonatal Palliative

Care Attitude Scale

(NiPCAS)

Beckstrand, R.

2019/USA

Mixed

Nurses (n=121)

NICU

Difficulty in

communication with

parents

Conflicts with parents;

Inconsistency in medical

staff decisions; therapeutic

futility

Inadequate environment;

lack of privacy

National Survey of

NICU Nurses'

Perceptions of End-

of-Life Care

8 | Sousa, F.

Review article

Chin, S.

2020/USA

Mixed

Nurses

(n=200)

NICU

Non-inclusion of

Parents in decisions;

requirement for

continuation of

treatment

No understanding of the

goals of neonatal PC; stigma;

staff use life support

technology beyond what is

comfortable

Lack of support for

neonatal PC by society;

protocols; the physical

environment of the

NICU; lack of privacy

NIPCAS

Questionnaire with

open questions

Cerratti, F.

2020/Italy

Quantitative

Nurses

(n=347)

NICU

Suboptimal

communication

between parents and

healthcare

professionals; families

are not aware of

neonatal

palliative care options

Inability to share personal

views;

clinicians felt out of tune

with parents’ requests to

prolong infants’ lives;

unsatisfactory previous

experience in providing care

in a palliative setting

Physical environment

not appropriate; shortage

of resources; for

palliative care; lack of

formal end-of-life

policies and neonatal

palliative care in-service

education for staff

NIPCAS

Kilcullen, M.

2017/Australia

Qualitative

Nurses

(n=8)

NICU

Family is far away

from the hospital; no

use of technology

to communicate

Lack of experience in PC;

emotional distress; difficulty

in changing the model of

care from curative to

palliative

Lack of privacy; lack of

recommendations,

procedures and policies,

absence of evaluation

Semi structured,

individual interviews

Kim, S.

2019/ South Korea

Qualitative

Nurses

(n=20)

NICU

Communication with

parents; demands for

the continuation of

treatment; parental

expectations

Lack of experience in PC;

difficulty in supporting

parents; conflicts about

deciding between comfort

care and

curative care; therapeutic

futility

Inadequate environment,

lack of privacy;

restriction of visits;

performance of

administrative functions

Semi structured,

individual interviews

Oliveira, FC.

2018/Brazil

Qualitative

Nurses

(n=9) -------------------------

Emotional distress;

identification with families;

lack of skills to provide PC;

lack of education/formation;

emotional disengagement,

repression of feelings and

thoughts, avoidance

Limited institutional

support for PC;

inconsistencies in

hospital policies; lack of

standardized PC and

protocols

Semi structured,

individual interviews

Gibson, K.

2018/Australia

Review of the

Literature

Nurses

Decisions

made by parents to

continue treatment;

irrational expectations

relating to the long-

term outcomes of

infants

Moral distress; sense of

powerlessness; prolonged

emotional involvement with

families; avoidance; lack of

knowledge, experience, and

competence; lack of

palliative care education

Inadequate environment;

NICU guidelines on

palliative care poorly

reflect the values and

ideals of staff or the

community

Kachlová, M.

2021/Czech

Republic

Quantitative

Nurses

(n=109)

UCIN

Parental demands to

continue curative

treatment

Lack of training in PC;

lack of emotional support

Inadequate ratio of

human resources;

Inadequate environment;

Lack of support for

training

NiPCAS

Sadeghi, N.

2021/Iran

Qualitative

Nurses

(n=12)

UCIN

Parents do not accept

death of the

infant; parents'

presence

Inadequate ratio of nurses;

emotional stress; medical

indication for continue

treatment

Inadequate environment Semi-structured in-

depth interviews

Salmani, N.

2018/Iran

Review of the

Literature

UCIN

Requirement for

continuation of

treatment; culture and

religion

Health professionals’

negative attitude toward

death; religion; lack of

training in PC; ethical

dilemmas

Absence of training

courses; Inadequate

environment;

low nurses/infant ratio

Kim, S.

2017/South Korea

Qualitative

Nurses

(n=20)

UCIN

Denying the infant's

medical situation;

discourage the

creation of memories

by grandparents

Emotional stress; beliefs and

cultures; inadequate ratios;

work overload

Absence of protocols

and

recommendations;

inadequate environment;

absence of team of

specialists’ in PC

Semi-structured

interviews

Silva, I.

207/Brazil

Qualitative

Nurses

(n=8)

UCIN

Parents not aware of

palliative options

Lack of PC training; lack of

dialogue between medical

and nursing teams;

impossibility of expressing

opinions in end-of-life

decisions

NICU organization;

routines; dealing with the

rules established by

institutions

Semi-structured

interviews

Silva, E.

2017/Portugal

Qualitative

Nurses

(n=15)

UCIN

Conflicts with parents

and between the

couple; difficulty in

decision-making

Lack of communication;

inability to provide support;

therapeutic boundaries; lack

consensus

Inadequate environment;

lack of privacy; absence

protocols

Semi-structured

interviews

Pensar Enfermagem / v.27 n.01 / march 2023 | 9

DOI: 10.56732/pensarenf.v27i1.200

Review article

Carvalhais, M.

2019/Portugal

Qualitative

Nurses

(n=15)

UCIN

Difficulty in

decision-making;

parents' suffering

Lack of PC training and PC

education

Absence of protocols,

recommendations;

diminished

psychological support

Semi-structured

interviews

Results

Search Results

According to figure 1 (PRISMA 2020 flowchart of the study

selection process), the search conducted in 10 databases

identified 483 records. Of these, 75 records were removed

by Covidence® for duplication. The screening of the title

and abstract of the remaining 408 records was

performed and 370 were excluded for not meeting the

inclusion criteria, leaving 38 reports for eligibility. After

reading the full text, 22 reports were excluded for not

meeting the inclusion criteria, namely the context, the

population, and not making reference to the study design.

Therefore, 16 studies were included in this scoping review.

Figure 1 - PRISMA 2020 flowchart of the study selection process

Characteristics of the studies included

In relation to the year of publication, there was a continuum

from 2016 to 2021. The year 2018 included 5 studies, 2017

and 2019 included 3 studies respectively, 2020 and 2021

with 2 studies respectively, and 2016 with only 1 study. The

studies were conducted in European countries (n=4), North

America (n=2), Middle East (n=4), South America (n=2),

Records identified from:

Databases (n =10)

Academic Search via EBSCO = 9

MEDLINE via EBSCO = 16

CINHAL via EBSCO = 13

B on = 38

Science Direct = 25

Scopus = 332

Nursing Reference Center Plus = 18

PubMed = 21

Biblioteca Virtual da Saúde = 9

Joanna Briggs Institute EBP Database via

OVID=2

Registers (n = 483)

Records removed before screening:

Duplicate records removed

(n =75)

Records screened

(n = 408)

Records excluded

(n = 370)

Reports assessed for eligibility

(n =38)

Reports excluded (n=22)

Reasons:

Wrong Population (n= 13)

Wrong Concept (n=4)

Wrong Study (n=5)

Studies included in review

(n = 16)

Identification of studies via databases and registers

Identification

Screening

Included

10 | Sousa, F.

Review article

Asia (n=2) and Oceania (n=2). The 16 studies analysed

adopted as methodological strategy the qualitative approach

(n=8) and the quantitative approach (n=4). Academic

dissertations with a mixed approach (n=2) and Literature

Reviews (n=2) were also identified. All studies elected the

NICU as context, and nurses as participants (n=16). The

main research objectives focused on exploring the

experiences 9,17–19, perceptions, and3,20–22 attitudes23–26 of

nurses towards the implementation of neonatal palliative

care and the challenges24,27 or barriers that exist.

Thematic analysis

Using the NVivo® software, a thematic analysis of the 16

studies was carried out and four themes

(figure 2) emerged reflecting the barriers influencing nurses'

attitudes towards palliative care in the neonatal intensive

care unit, namely, (1) the nurses' experience in providing

palliative care to newborn and their families; (2) the nurse's

communication with the multidisciplinary team and parents;

(3) the unfavourable conditions in which palliative care is

provided, (4) the institutional and organizational support

through the existence of protocols, guidelines, policies, and

expert teams in palliative. A word frequency counts of the

16 studies included in the review was carried out, and a word

cloud was generated (Figure 3). The most frequent topic

was “experience” (0.54%), followed by “environment”

(0.29%), “experiences” (0.28%), “healthcare” (0.24%),

“guidelines” (0.18%) and “perceptions” (0.17%). These

words reflect some barriers that may influence nurses'

attitudes towards palliative care in the NICU.

Figure 2 - Thematic analysis of the studies included in the scoping review (n=16)

Figure 3 - Word cloud analysis of studies included in the scoping review (n=16)

Pensar Enfermagem / v.27 n.01 / march 2023 | 11

DOI: 10.56732/pensarenf.v27i1.200

Review article

Instruments that enable the assessment of nurses'

attitudes towards palliative care in the NICU

Regarding the second question, “What instruments have been

used to assess nurses’ attitudes toward palliative care in neonatology?”,

from the analysis of the 16 studies included in the review,

eight (n=8) used the interview to identify the barriers that

influence nurses' attitudes toward NPC.3,7,17,19,21,22,29,30 Six

studies used scales and questionnaires, namely parents'

information and ethical decision-making in neonatal intensive care

units: staff attitudes and opinions24 (n=1), the National Survey of

NICU Nurses' Perceptions of End-of-Life Care7 (n=1) and the

Neonatal Palliative Care Attitude Scale - NiPCAS12,20,25,31 (n=4).

The Parents' information and ethical decision-making in neonatal

intensive care units: staff attitudes and opinions is a questionnaire

dating from 1997 and was used as an instrument for the

European study EURONIC.32 It was constructed to record

data on the organization and NICU policies, to survey the

opinions and attitudes of health professionals regarding the

transmission of information to parents, and the ethical

decision-making process in the NICU in relation to the

social, cultural, legal and ethical backgrounds of different

countries. The National Survey of NICU Nurses' Perceptions of

End-of-Life Care, used in a mixed study, is a questionnaire

aimed to identify nurses' perceptions of end-of-life care. It

was based on four similar questionnaires applied to nurses

in adult intensive care units, emergency departments,

oncology units and paediatric intensive care units. The

Neonatal Palliative Care Attitude Scale - NiPCAS11 was

developed to examine neonatal nurses' attitudes towards

palliative care, attitudes which may constitute barriers or

facilitators to PC in the NICU. It is a five-point scale (1 to

5) ranging from strongly disagree to strongly agree. It

assesses three dimensions, namely organization, resources,

and clinicians. This scale has been used in several studies,

translated and validated for other countries12,25,31,33,34 and the

results obtained are very similar, i.e., the barriers identified

are related to the lack of training in PC, lack of

communication with parents, lack of institutional support,

the existence of an environment not conducive to the

practice of PC and the imperatives related to technology.

Discussion

In the vast majority of studies, the barriers influencing

nurses' attitudes towards palliative care in the NICU relate

to lack of experience in providing NPC, lack of training, lack

of skills/competencies in communicating with parents and

among health professionals, difficulty in dealing with one's

own emotions and difficulty in decision-making.

Not having experience in providing palliative care to the

newborn, or having had bad experiences, may increase

emotional stress and promote situations of avoidance and

difficulty in communicating with the family.9,26,28

Nurses' little experience in PC combined with lack of

knowledge about the philosophy, principles, and practices

of PC, is one of the barriers that influence their attitudes

towards the implementation of palliative and support

measures for the newborn and their family.3,9,19,30,31,35,36

Therefore, nursing schools curricula37, health services and

institutions27 should promote PC training at different levels

and create a culture that promotes and supports the

philosophy of PC3,9,38, and nurses' professional and personal

development.

As a very demanding and specific area, NPC requires

theoretical education, technical preparation and training in

order to ensure quality care that is culturally sensitive and

meets the needs of the newborn and the family. There are

recommendations39 for nurses’ training in the area of PC at

basic, intermediate and specialized level. The purpose of

this training is to understand the concept of PC, assess and

manage the symptoms, pain, and discomfort experienced

by newborn, children and young people, acquire

communication skills with these age groups and their

families, and understand suffering, the dying process,

death, and grief. Obtaining knowledge on symptom

control, namely pain control, is essential to ensure the

comfort of the newborn and the reduction of parental

stress. PC training provides tools and skills that allow

demystifying the use of certain medications for pain relief

in newborns, namely the use of opioids. The health team

learns to recognize the signs and symptoms of pain and

discomfort, objectively assesses the level of pain and

justifies the use of opioid, analgesic and sedative drugs,

promoting the quality of life of the newborn and his/her

family and, finally, the reduction of the emotional distress

of the health professionals caring for the triad.

Another key issue in training and acquisition of PC skills is

communication of bad news, including those related to end-

of-life. Nurses consider it a challenge and a complex

intervention to give bad news to parents40, a procedure

causing emotional distress, but essential for decision-making

centred on the needs of the parents and the newborn.

Communication is the foundation stone of PC and family-

centred care (FCC), and may be a barrier that influences the

attitudes of nurses towards PC at the NICU since there may

be conflicts between parents and the health team22, and

within the health team itself.31,36–38 Language, culture, and

religion of the parents (but also of the health professionals)

may be an obstacle27,36, hindering the transmission of

information on the newborn clinical condition, diagnosis,

and decision-making regarding curative versus palliative care

options.31 Parents may not understand and accept the

decision to initiate PC, demanding that active treatment and

life support be continued22,27,36,38,41, presenting to the

healthcare team ethical dilemmas and emotional distress that

may hinder the change from curative to palliative care.

According to the FCC philosophy, the information parents

receive should be consistent, honest, and realistic7, and

parents should be incorporated into the definition of the

anticipatory care plan4,30,34, allowing them to adapt to

difficult situations, as parental stress levels may decrease if

the health team consistently adheres to FFC practice,

reducing inconsistencies in the implementation of

interventions and fostering the use of the “same language”

by the health team.

Another theme described as a barrier influencing nurses'

attitudes towards NPC is the unfavourable conditions in

12 | Sousa, F.

Review article

which palliative care is provided.3,7,27,31,34–36,41 An unsuitable

environment that does not allow for privacy3,7,23,25 is

perceived by nurses as a barrier to the provision of palliative

care. his/her family. The vast majority of NICUs are

characterized by being a large, open space, where newborn,

parents and health care team coexist, thus reducing the

parents' privacy and comfort. The possibility of caring for

newborn with PC in a room separate from the NICU would

allow parents to enjoy the support of other relatives and

also to release their emotions and feelings regarding the

process of suffering that they are experiencing. However,

this option would require structural and physical changes

to the NICU itself and an increase in the nurse ratio, which

may not be possible due to organizational issues.27,38 The

shortage of nurses promotes a reduction in the

nurse/newborn ratio, which makes it difficult for nurses to

be available to accompany and be with parents, to respond

to parental wishes and provide all the comfort care they

need.12,18,27

Institutional and organizational culture and support may be

a barrier that influences nurses' attitudes towards the

implementation of NPCs.

The absence or lack of recommendations, protocols,

standards, and policies favours the ad hoc implementation

of NPC42,43 because decision-making, tasks to be

developed, and responsibilities in the different phases of

the process depend on the attitude of each member of the

healthcare team towards NPC3,9,17,41,44, promoting

inconsistency of care and increased stress for parents and

health team. The lack of guidelines, protocols or

organizational policies9,21,22,24,26 may promote situations

where decision-making is not based on the needs of the

newborn and his family.

The existence of recommendations, standards, and policies

together with the possibility of consulting a team of experts

in PC can reduce barriers and favour decision-making.

Also, the hospital institutions should create an Intra-

Hospital Paediatric Palliative Care Support Team, scaled to

local characteristics and needs, which can provide direct

care and guide in the execution of the individual care plan

for children and young people in a situation of complex

chronic illness and their families, whenever their

intervention is requested.

One barrier associated with the implementation of NPC is

related to the use of the word end-of-life and the effect it has

on care provision. The word end-of-life7,17,19,30,35,44, relates

PC with dying and death. This relationship between PC and

death promotes ethical dilemmas and moral distress in

nurses27, since they experience feelings of personal failure37

in the face of death and parents' expectations and

demands27,34,38,41, adopting interventions related to

therapeutic futility, therapeutic distress and the difficulty in

changing the model of curative care to palliative

care.7,19,30,34,41 However, the focus of NPC is not entirely

on end-of-life and death, but rather on life and the possible

transition of the newborn home. This way of being enables

newborn and families to live their lives to the fullest while

coping with complex medical conditions45, promoting

parenting and parental roles, positive experiences and

memories for the whole family for as long as life lasts.

Regarding the identified instruments, the interview is one

of the techniques used in qualitative research and gather

information about participants’ experience and views.

Knowing that providing NPC in neonatal unit can place an

emotional burden on nurses, the interview is a suitable tool

to explore the complex problems nurses experience in their

practice and to understand how and why their attitudes

impact the provision of palliative care.

With regard to quantitative studies, in this scoping review

only one instrument was identified to assess nurses' attitudes

towards palliative care in the NICU – NiPCAS.11 The

barriers to the provision of NPC, namely attitudinal,

educational, environmental and institutional barriers,

identified through the interview in studies with a qualitative

approach are similar to the barriers identified by studies that

used a quantitative approach using questionnaires or scales.

Limitations

In this scoping review only neonatal nurses were considered

as participants and other health professionals were excluded,

which may have offered a different perspective on the

barriers influencing nurses' attitudes towards palliative care

in neonatology. The content of some instruments, such as

the interviews, was not available, so the analysis of the

studies may have been incomplete.

Conclusion

This scoping review included 16 studies whose focus was on

identifying the barriers influencing nurses' attitudes towards

palliative care in the neonatal intensive care unit and the

instruments that enable the assessment of nurses' attitudes

towards palliative care in the NICU. Our findings reinforce

the need for neonatal nurses to respond not only to

technological demands, but also to the newborn and

parent's personalized demands and to those posed to

themselves as people. Neonatal nurses face a number of

barriers that may influence their attitudes towards neonatal

palliative care. The lack of experience and training in

palliative care and the deficit of communication between the

healthcare team and the one established with parents were

considered to be the major barriers to the provision of

neonatal palliative care. Thus, we may say that it is urgent

and important to develop and boost training programmes

related to palliative care, namely those directed to the area

of neonatology, define policies and protocols that specify

the tasks and responsibilities that each professional develops

in the different phases of the care process, to reduce the

moral distress and ethical dilemmas faced by nurses,

decrease parental stress, and allow for interventions focused

on the newborn and the family. Different instruments are

used to assess nurses' attitudes towards neonatal palliative

care, however, only one of these instruments is dedicated to

the area of Neonatology. Further research with other health

professionals is important to adjust interventions and

promote the improvement of neonatal palliative care.

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DOI: 10.56732/pensarenf.v27i1.200

Review article

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| 16

Pensar Enfermagem / v.27 n.01 / march 2023

DOI: doi.org/10.56732/pensarenf.v27i1.213

Review article

How to cite this article: Frade A, Pinto V, D'Espiney L. Experiences of having lived with Broca’s aphasia:

a scoping review. Pensar Enf [Internet]. 2023 Mar; 27(1):

16-29. Available from:

https://doi.org/10.56732/pensarenf.v27i1.213

Experiences of having lived with Broca’s aphasia:

a scoping review

Abstract

Introduction

Broca’s aphasia, a non-fluent aphasia, is a frustrating condition with extensive psychological,

familial, and social impact. The reports of people who have already recovered or can express

themselves are essential to increasing knowledge about the experience of living with Broca’s

aphasia. A-FROM is a framework designed to organize thinking about the impact of living

with aphasia and includes four key domains: Communication and language environment; Language

and related impairments; Personal identity, attitudes and feelings, and Participation in life situations.

Nursing intervention is central to optimizing recovery and positively influencing the

experience of successfully living with this clinical condition.

Objective

To map scientific evidence about the experience of people who lived through a period of

Broca’s aphasia.

Methods

A Scoping Review was performed following the Joanna Briggs Institute methodology. The

review was based on the research question, "How does the person report the experience of having

lived through a period of Broca’s aphasia?", formulated according to the PCC strategy. The search

was carried out in MEDLINE®, CINAHL®, Psychology and Behavioral Sciences Collection, and

Scopus electronic databases in November 2022. Articles were selected based on the eligibility

criteria. The review followed the PRISMA-ScR EQUATOR checklist.

Results

Seventeen articles published between 1961 and 2022 were included. Data obtained were

grouped according to the key domains of the A-FROM tool. Information related to Personal

identity, attitudes and feelings, and Participation in life situations were the most cited, followed by

Language and related impairments and Communication and language environment.

Conclusion

It was identified that health professionals, therapeutic interventions, spirituality, hope,

context, interactions, and psychosocial factors influence the experience of Broca’s aphasia.

It is essential to continue investigating how people report the experience of having lived

through a period of Broca’s aphasia to improve the quality of care and people's quality of

life.

Keywords

Aphasia, Broca; Communication; Language Disorders; Life Change Events; Nursing;

Review Literature as Topic.

Ana Frade1

orcid.org/0000-0002-0590-4290

Vanda Pinto2

orcid.org/0000-0001-7047-1498

Luísa D’Espiney3

orcid.org/0000-0002-9018-0134

1PhD Student in Nursing. University of Lisbon.

Nursing School of Lisbon (ESEL). Nursing Research,

Innovation and Development Centre of Lisbon

(CIDNUR)

2PhD. Nursing School of Lisbon (ESEL). Nursing

Research, Innovation and Development Centre of

Lisbon (CIDNUR).

3PhD. Nursing School of Lisbon (ESEL).

Corresponding author

Ana Inês de Almeida Frade

E-mail: ana.ines.frade@esel.pt

Received: 14.11.22

Accepted: 02.02.23

Pensar Enfermagem / v.27 n.01 / march 2023 | 17

DOI: doi.org/10.56732/pensarenf.v27i1.213

Review article

Introduction

Aphasia, an acquired language disorder, can affect a person’s

ability to understand or formulate language1. Stroke is the

most common cause2. Broca’s aphasia is an expressive

aphasia, a non-fluent aphasia, and currently, it is accepted

that two main variants exist3. In one true Broca’s aphasia,

extensive damage involves the Broca’s area, the surrounding

frontal fields, the underlying white matter and basal ganglia4.

In Broca’s aphasia, a drastic loss of speech fluency occurs4.

The ability to name and repeat is disturbed but listening

comprehension is usually normal for colloquial language3.

One of the most substantial changes is a loss of the ability

to introduce some rules into the form of speech. The logic

of sequencing the constituent elements may be correct and

yet there are no linking particles or verb conjugations3.

These changes create a communication impairment and

impact the quality of life and well-being5. Broca’s aphasia is

a frustrating condition with extensive psychological, familial,

and social impact, where the person is often aware of their

communication difficulties2,5. Because of each person’s

individuality, context, and injury etiology, Broca’s aphasia is

a unique and idiosyncratic experience6.

Living with aphasia: a framework for Outcome Measurement (AǦ

FROM) is a structure designed to understand, guide, and

organize thinking related to the impact of living with

aphasia7. It was adapted from the World Health

Organization International Classification of Functioning,

Disability, and Health (ICF) and incorporated concepts

from other models, such as the Canadian Disability Creation

Process model8. It is a broad, non-prescriptive approach to

outcome measurement that considers the impact of aphasia

in important areas of life for the people with aphasia and

their families. It is designed to help healthcare professionals

and researchers think about the aphasia results, addressing

several factors that affect the success of living with aphasia7.

The AǦFROM structure encompasses four key domains,

which are dynamic, overlap, and interact with each other:

Communication and language environment (any element outside

the person who facilitates or acts as a barrier to

communication, including individual/social attitudes,

partner attributes or physical factors); Language and related

impairments; Personal identity, attitudes and feelings, and

Participation in life situations (involvement in relationships,

functions, and daily activities)9.

Because of impaired communication, people with aphasia

often face barriers in accessing health information10. Their

capacity to transmit symptoms, question, request care, and

express feelings, needs, wills, and decisions concerning their

healthcare is compromised10. In nursing, understanding and

being understood while communicating is crucial to quality

of care and to meet the patient’s care needs11. Nursing

interventions are central to promoting effective and

therapeutic communication, optimizing recovery, and

positively influencing the experience of successfully living

with this clinical condition12.

People experiencing Broca’s aphasia cannot communicate

changes at that moment. Due to this, reports of people who

have recovered from aphasia or can express themselves are

vital to understanding Broca’s aphasia experience13.

Narrating the “internal world” is a vital source of

information for understanding the experience of living

without language13. Experience is what happens to us, what

touches us, and when it reaches us, it shapes and transforms

us14. In this context, knowledge of experience is about the

meaning of what happened14, how the person interprets,

understands and explains this experience, which

presupposes an individual reflection15. Illness experiences

are full of meanings16, which can only be understood

through the meaning attributed by those who experienced

them. Understanding the individual experience of the

person who went through a period of Broca’s aphasia from

a retrospective perspective and not from an immediate lived

experience, increases the comprehension of the

phenomenon and reveals subjective truths. The experience

is always subjective, individual and unique, including Broca's

aphasia experience.

In a preliminary search, it wasn’t found any literature review

about the experience of having lived through a period of

Broca's aphasia from the perspective of people who have

experienced this clinical condition. Thus, the high

prevalence of strokes, as the main cause of aphasia2 and the

impact of this language disorder on the person’s life justified

the need to develop this Scoping Review. Besides mapping

and reporting the existing evidence, this review will clarify

key concepts and identify gaps in the knowledge regarding

the experience of having lived with Broca's aphasia17. It’s

crucial to decrease the gap between the people’s perspective

who have experienced this phenomenon and the external

perspectives on aphasia18.

Aims

The main aim of this Scoping Review is to map the

available scientific evidence about the experience of adults

who lived a Broca’s aphasia period according to their

perspective, regardless of etiology. More specifically, the

purpose of this review is to identify what people report

about their Broca’s aphasia experience, the impact and

changes, the feelings and needs that emerged, factors that

influenced the experience, which supports and resources

they had and which they would have like to have had,

always from the individual’s perspective.

Exploring the experiences of people with aphasia can

improve the quality of care19. Thus, the understanding

gained in this review and the transferring this knowledge

into practice can improve the health care provided to

individuals with Broca's aphasia, including the quality of

nursing care, by implementing more efficient nursing

interventions addressing this population's needs. This

knowledge can also be important for people with other

language disorders and may contribute to improving health

outcomes.

Methods

A Scoping Review was developed following the Joanna

Briggs Institute methodology as a guide for transparent

Frade, A.

Artigo

research that allows understanding and replicating the entire

path20. The review was based on the research question:

“How is reported by the person the experience of having lived a Broca’s

aphasia period?”. It was formulated according to the PCC

strategy: P=Population (adults who experienced Broca’s

aphasia); C=Concept (report of Broca’s aphasia experience);

C=Context (ambulatory and hospital). This study adheres to

the PRISMA-ScR EQUATOR checklist (Supplementary

File 1).

Eligibility criteria

Study inclusion criteria:

Population: adults aged 19 years or over (according to

the adult’s definition of World Health Organization21)

with no maximum age limit, who have lived a Broca’s

aphasia period (or expressive aphasia or a non-fluent

aphasia), or that are still in recovery but are able to

express themselves.

Concept: Broca’s aphasia experience from the

participants’ perspective regardless of Broca’s aphasia

etiology. What people report (e.g., direct quote,

interview data) about Broca’s aphasia experience, the

impact, changes, feelings, specific needs, strategies and

resources used, factors that influenced the experience,

and which supports and resources they would like to

have had.

Context: ambulatory and hospital context.

Primary studies, theoretical articles, literature reviews,

and reports of experiences in English, Spanish and

Portuguese, regardless of the year of publication,

published in periodical journals, with access to the full

text.

Study exclusion criteria:

Population: children; participants who are diagnosed

only with other types of aphasia; participants who have

chronic aphasia (chronic aphasia was defined as

coexisting at least one year after the injury that caused

it22); participants who cannot express themselves;

participants who have impaired communication

resulting from sensory loss, dementia, delirium, or coma;

participants who are diagnosed only with motor speech

disorders resulting from muscle weakness or

incoordination.

Concept: experiences only from the perspective of

caregivers, couples, friends, and healthcare

professionals.

Sources of information and search strategy

The research was carried out in November 2022. A strategy

that encompasses three stages was adopted20. The first step

included a search in the MEDLINE® (Medical Literature

Analysis and Retrieval System Online Complete) and

CINAHL® (Cumulative Index to Nursing and Allied

Health Literature Complete) databases, using terms in

natural language. Subsequently, the titles and abstracts’

words were analyzed, as well as the indexed words used to

describe the article, which allowed us to identify relevant

search terms for this Scoping Review. In the second stage, a

search was performed in the MEDLINE®; CINAHL®;

Psychology and Behavioral Sciences Collection (via

EBSCO) and in the Scopus database using search terms in

natural language and DeCS and MeSH indexing terms in all

fields of the articles without selecting a specific field,

applying boolean operators "OR" and "AND", as explained

in Table 1. The third phase of the research comprised the

analysis of the references lists of the articles selected for this

review to find important complementary studies to answer

the research question.

Table 1 – Search terms used in databases

CINAHL MEDLINE

PSYCHOLOGY AND

BEHAVIORAL SCIENCES

COLLECTION

SCOPUS

(Narrati* OR (MH "Narratives") OR

(MH "Narrative Medicine") OR (MH

"Life Histories") OR (MH "Reports"))

AND

((Experience* OR (MH "Life

Experiences") OR (MH "Life Change

Events") OR (MH "Psychosocial

Aspects of Illness") OR Psychosocial

adjustment)

AND

(Aphasi* OR (MH "Aphasia, Broca")

OR (MH "Speech Disorders") OR

Communicat* Disorders OR

Communicat* Difficulties))

(Narrati* OR (MH "Narration") OR

(MH "Narrative Medicine") OR Life

Histories OR Report*)

AND

((Experience* OR Life Experience*

OR (MH "Life Change Events") OR

Psychosocial Aspects of Illness OR

Psychosocial adjustment)

AND

(Aphasi* OR (MH "Aphasia, Broca")

OR (MH "Speech Disorders") OR

Communicat* Disorders OR

Communicat* Difficulties))

(Narrati* OR Life Histories

OR Report*)

AND

((Experience* OR Life

experience* OR Life Change

Events OR Psychosocial

Aspects of Illness OR

Psychosocial adjustment)

AND

(Aphasi* OR Broca Aphasia

OR Speech Disorders OR

Communicat* Disorders OR

Communicat* Difficulties))

(Narrati* OR Life Histories OR

Report*)

AND

((Experience* OR Life

experience* OR Life Change

Events OR Psychosocial Aspects

of Illness OR Psychosocial

adjustment)

AND

(Aphasi* OR Broca Aphasia OR

Speech Disorders OR

Communicat* Disorders OR

Communicat* Difficulties))

Pensar Enfermagem / v.27 n.01 / march 2023 | 19

DOI: doi.org/10.56732/pensarenf.v27i1.213

Review article

Selection of sources of evidence

Following the search in databases, the articles identified

were uploaded into the electronic tool Rayyan to organize

the results and remove duplicates. The selection of the

studies was carried out according to the inclusion and

exclusion eligibility criteria. It started with reading the titles

and abstracts, followed by reading the full text of the studies

identified for eligibility. Studies that did not meet the

inclusion criteria were excluded. Two reviewers performed

the selection of sources of evidence. The consensus of the

independent reviewers resolved discrepancies in the

inclusion or exclusion of articles.

Data collection and synthesis of results

To extract relevant information from the studies included in

the review, an instrument (table) was built in Microsoft

Excel, based on Joanna Briggs Institute guidelines20. This

table includes information about the author(s), year of

publication, country, aims, participants, methodology,

aphasia etiology, concept (Broca’s aphasia experience), and

context.

Results

Selection of sources of evidence

A total of 1012 articles were obtained from the search in

CINAHL®, MEDLINE®, Psychology and Behavioral

Sciences Collection, and Scopus databases.

After removing duplicates, 961 articles were obtained. The

selection of the studies was carried out according to the

inclusion and exclusion criteria. After reading the title and

abstract, 905 articles were excluded because they weren’t

related to the theme and didn’t meet the inclusion criteria.

56 articles were sought for retrieval, but 2 could not be

retrieved. 54 articles were assessed for eligibility. After

analysis, 44 articles were excluded: 15 because the

participants were people with chronic aphasia; 23 for not

addressing the aphasia experience according to the

participant’s perspective; 2 because the focus was not the

phenomenon under study, and 4 because they only address

other types of aphasia. Of these articles, 10 were included

in the review. From the analysis of the included studies’

references 7 more articles were added, totaling 17 papers at

the end. The PRISMA 2020 flow chart20 (Figure 1) shows

the study selection process.

Records identified from databases (n=

1012):

CINAHL (n= 162)

MEDLINE (n= 489)

Scopus (n= 196)

Psychology and Behavioral Science

(n= 165)

Records removed before screening:

Duplicate records removed

(n= 51)

Records screened

(n= 961)

Records excluded after reading the title

and abstract

(n= 905)

Reports sought for retrieval

(n= 56)

Reports that could not be retrieved

(n= 2)

Reports assessed for eligibility

(n= 54) Reports excluded (n= 44):

- Participants with chronic aphasia (n= 15)

- Doesn’t address the

aphasia experience according to

the participant’s perspective

(n= 23)

- The focus isn’t the phenomenon under study (n= 2)

- Addresses only other types of aphasia (n= 4)

Studies included in review

(n= 10)

Reports of included studies

(n= 7)

Identification

Screening

Included

'JHVSF13*4."GMPXDIBSU

Frade, A.

Artigo

Characteristics of included studies

Seventeen articles published between 1961 and 2022 were

identified. Seven studies were developed in

Australia23,24,29,30,31,37,38, five in United States of

America26,32,33,34,35, two in United Kingdom27,36, one in

Netherlands28, one in New Zealand25, and one in

Argentina13. The methodology used in the selected articles

varied from primary qualitative

studies23,24,25,26,27,28,30,31,33,34,36,37,38, experience reports29,32, and

theoretical articles that contain a first-person experience

report13,35. The aphasia etiology in the analyzed articles was,

in its great majority, the stroke.

It is essential to state the difficulty in finding studies only

with people diagnosed with Broca’s aphasia. The

justification probably is because, in most situations, the

biggest problem occurs in expression, but often this is not

unique, rigorous, specific and doesn’t occur in isolation. In

the search carried out, it wasn't found any article exclusively

about the experience of Broca’s aphasia with participants

that only experienced Broca’s aphasia and without other

associated language disorders. One article reports the

experience of Broca's aphasia and speech apraxia35. Still, all

the selected articles for this review include participants

diagnosed with Broca’s aphasia, or expressive aphasia or

non-fluent aphasia.

Only one study explicitly and specifically reports the impact

of writing impairment in Broca’s aphasia experience36. All

the other articles included in this review address mainly or

only language disorders regarding oral communication.

Synthesis of results

The analysis of the selected studies allowed us to answer the

research question. The results extracted from this Scoping

Review varied between the impact of Broca’s aphasia, which

affects a person’s different dimensions, inhibitory factors,

and facilitating factors of living successfully with this clinical

condition. The following Table 2 enables visualizing the

results extracted from the analyzed articles and framing

them with the review’s question and objectives.

Table 2 – Results extraction

Author(s)/

year/

country

Aims Methodology Population Concept: Broca’s aphasia experience Context

S1 - Ardila A

and Rubio-

Bruno S13

2017

Argentina

To analyze how

people with

aphasia

experience the

world and what

they report

about the

experience of

living without

language

Theoretical

article

(contains a

first-person

experience

report)

Adults with

aphasia,

including

adults with

Broca's

aphasia

- People with aphasia live in an idiosyncratic cognitive world. The

internal cognitive world is altered due to the lack of language.

Cognitive strategies need to be reorganized ("I had to reinvent the

world around me because this universe was only in words"); (verbal)

intelligence is compromised;

- In aphasia, only external stimuli are available. A particular

dimension of the world is lost (language) and only the visual-

perceptual information remains (“And suddenly the words

disappeared”);

- Nonverbal skills are sometimes affected in aphasia;

- "It was no longer important to discover the beauty since it cannot be expressed

in words".

Not

specified

S2 -

Armstrong E

et al.23

2012

Australia

To present

stories of living

with aphasia

Qualitative

Two people

with

expressive

aphasia who

can already

express

themselves,

and one

person who

had aphasia

(not specified)

but recovered

quickly

- During hospitalization, it was important to meet people for not

to feel isolated or the only one with a problem;

- Frustration due to difficulties and failures, and with some

therapeutic activities (difficulty or not being able to perform

simple tasks);

- Emphasis on using humor to help;

- Importance of independence to direct their own communication

recovery;

- Reading the newspaper every day to help to recover language;

- Talking with animals at home to practice speaking;

- Feeling that could help himself more effectively than speech

therapists;

- It was important to feel connected to family and friends and talk

to them.

Ambulatory

Pensar Enfermagem / v.27 n.01 / march 2023 | 21

DOI: doi.org/10.56732/pensarenf.v27i1.213

Review article

S3 - Baker C

et al.24

2020

Australia

To describe,

from the

perspective of

people with

aphasia, the

experience of

mood changes,

depression, and

current

practice; to

describe

preferences

within a

stepped

psychological

care approach

Qualitative

Ten adults

with aphasia,

including

adults with

expressive

aphasia

- All participants experienced mood changes but didn’t experience

gradual psychological care in rehabilitation;

- The onset is traumatic, with negative changes in mood and

depression, with negative emotional, social, and behavioural

consequences (social evasion, persistent low mood, sadness, and

withdrawal from rehabilitation);

- People try to overcome communication and mood difficulties

with limited psychological support and rehabilitation services (low

mood and depression are rarely addressed, and people aren’t

always supported to be independent or make decisions on

rehabilitation with an impact on mood);

- Positivity, supporting communication, and access to

individualized therapeutic interventions would be essential

through gradual psychological care to improve rehabilitation

results.

Ambulatory

and hospital

context

S4 - Bright F

et al.25

2013

New Zealand

To explore how

hope was

experienced by

people with

aphasia and

identify factors

that influence it

Qualitative:

interpretative

description

Five people

with aphasia:

one with

Broca’s

aphasia, three

with anomic

aphasia, and

one with

conduction

aphasia

- Hope is fluid, changes frequently and in a short period, and is

important;

- It seems to be related to how people get involved in

rehabilitation and can be influenced;

- Factors that influence hope: family, friends, health professionals

(either supporting or reducing) and other patients; uncertainty

about the future; see hope with a double face (positive and

negative aspect) and a sense of disruption (in identity and/or

involvement in meaningful activities).

Ambulatory

S5 - Carcello

K and Susan

M26

2020

United States

of America

To gain a

greater

understanding

of the

therapeutic use

of blogs for

stroke survivors

with aphasia,

from a psycho-

socio-

emotional

perspective

Inductive

qualitative

content

analysis

Five stroke

survivors with

aphasia: two

with Broca’s

aphasia and

three with an

unknown type

of aphasia

Participants used blogs to explore what living with aphasia was

like:

Difficulty in communicating, writing, and interacting with

others by expressing their emotional responses and personal

experiences;

ǦLoss of words: “I’m constantly trying to find the word I need.”; the

devastation of aphasia and emotional impact: “the speech I used to

rely on for a living was gone ...It hurts having to search for words.”

ǦProcess of writing: “sometimes I can’t remember the word I want.

Sometimes I leave out several words. My spelling is awful. But the thing

that pains me most is the grammar ... this writing thing is hard”;

Aphasia affects self-expression and often-times self-concept

and identity: “Before, I could talk intelligently and think straight. After

this, I’m virtually mute (…).”

Not

specified

S6 - Clancy L

et al.27

2018

United

Kingdom

To explore the

experience of

stroke survivors

with aphasia,

caregivers and

healthcare

professionals

Qualitative

Six stroke

survivors with

aphasia

(including

adults with

expressive

aphasia), ten

caregivers and

six health

professionals

- Aphasia has an emotional impact;

- "Interactions" and "context" can help or hinder the process of

making sense, the emotional burden and the involvement in

rehabilitation;

- Three broad themes were identified: “being in a foreign country”,

“finding a voice”, and “being just a number”.

Ambulatory

and hospital

context

S7 - Dalemans

RJ et al.28

2010

Netherlands

To explore how

people with

aphasia,

perceive their

participation in

society and

investigate the

factors that

influence it,

focusing on

individual

experiences and

perspectives

Qualitative

Thirteen

adults with

aphasia

(including

adults with

expressive

aphasia) and

twelve

caregivers

- The involvement and feeling of belonging in social activities (the

quality of the activities is more important than the quantity);

- People with aphasia feel isolated, but want to feel involved;

- Feeling of being a burden to others, wanting to function

normally;

- Inability to work often, wishing to contribute in other ways;

- Feeling stigmatized, wishing to be respected;

- Factors that influence involvement in social participation:

• Personal factors: motivation, physical and psychological

condition, and communication skills;

• Social factors: the role of the central caregiver and the

characteristics of the communication partner (s), namely will,

skills and knowledge;

• Environmental factors: home peace and familiarity.

Ambulatory

S8 - Green C

and Waks L29

2008

Australia

Share the

language

recovery

(expression

ability) of a

person with

aphasia

Experience

report

Adult with

expressive

aphasia who

has greatly

recovered

- "I had no words to express myself"; "In the hospital, they do not deal well

with aphasia or language problems. If a person cannot communicate, the whole

system collapses"; "I had to rebuild my life"; "Progress has been very slow";

"I found that even the simplest things were difficult"; "Contacting with a

person who went through a similar situation in rehab gave me a glimpse of

hope";

- When he got home, he didn't want to go in and felt like he didn't

belong there anymore, like a stranger in his own home. Although

he was loved, life changed;

Ambulatory

Frade, A.

Artigo

- "Four months later, I only had a handful of words"; "I felt that I had lost

the most important thing in my life. I didn't see the future"; "I wish I wasn't

alive"; Nine months after the stroke he had to resign his position;

"I was recovering the language over time, but I couldn't see it"; "I felt that the

language was stuck''; "I learned to enjoy life again"; "Recovery is extremely

difficult and people feel that they lost something and lament; "We lost our

dreams, hope, and planned future"; "We lost our confidence".

S9 - Grohn B

et al.30

2012

Australia

To describe the

experience of

the first three

months post-

stroke; to

identify factors

that facilitate

the success of

living with

aphasia

Qualitative: a

prospective

longitudinal

study

Fifteen people

with aphasia,

including

adults with

expressive

aphasia

- Factors that facilitate the success of living with aphasia:

• Be involved in recovery, be independent, feel to be in

control of life and have a purpose in life;

• Carry out activities to improve communication: reading,

sudoku, Scrabble, writing a shopping list, using the computer

and the phone, homework prescribed by therapists;

• Social support and involvement of family and friends

(including using communication strategies) to help restore

confidence and feel competent;

• Meet people in the hospital and group therapy (source of

support, courage, and motivation);

• Importance of rehabilitation, speech therapy, and health

professionals (important in the recovery of language, for

social interactions, source of information, motivation,

courage, and confidence);

• Adaptation (using strategies to improve communication);

• Have a positive outlook (optimism, hope, determination,

and gratitude);

- Inability to participate in activities that define the role and

previous identity leads to anguish about the future and has and

impacts identity/self.

Ambulatory

and hospital

context

S10 - Grohn B

et al.31

2014

Australia

To describe the

insider’s

perspective of

what is

important to

living

successfully

with aphasia

and the changes

in the first year

Qualitative:

longitudinal

prospective

study

Fifteen people

with aphasia,

including

adults with

expressive

aphasia

- The perception of communication improvements;

- Moving forward actively through positive actions and

involvement in meaningful activities;

- Social support, family, and friends;

- Maintaining positivity about the future.

Ambulatory

S11 - Hall

WA32

1961

United States

of America

Not mentioned Experience

report

An adult who

has

experienced

expressive

aphasia

- Inability to communicate feelings;

- Not accepting the inability to speak;

- Feelings of pity and pity of the family and others;

- Feeling of self-rejection and worthlessness received with

comforting words instead of rejection;

- Visits invaded the private world;

- Anxiety;

- Speaking and writing were incompatible with simultaneous

thought processes;

- The speech was inappropriate for competition and success in the

job market;

- Importance of speech therapy and psychotherapy in speech

rehabilitation.

Hospital

context

S12 - Holland

AL et al.33

2010

United States

of America

To provide

ideas on

topics/content

for treatment

that are

meaningful to

people with

aphasia

Qualitative

Thirty-three

adults with

aphasia

(twenty-nine

with non-

fluent aphasia)

- Talk about their life experiences, reconnect with families and

focus on communicating on the following topics:

• Life's history;

• Prayers, testimonies, speeches, and palestras;

• External interests;

• Making plans;

• Talking to family and other people and talking about work;

• Search or provide information (about strangers, about the

family; asking and answering questions);

• Making an order at a restaurant;

• Telephone.

Not

specified

Pensar Enfermagem / v.27 n.01 / march 2023 | 23

DOI: doi.org/10.56732/pensarenf.v27i1.213

Review article

S13 - Laures-

Gore JS et al.34

2018

United States

of America

To explore the

spiritual

experience of

adults with

aphasia, to

understand the

role of

spirituality in

recovery

Qualitative

Thirteen

adults with

aphasia,

including

adults with

expressive

aphasia

- Spirituality can contribute to the recovery, understanding, and

acceptance of life changes (coping strategy): as a greater power in

controlling events and as an auxiliary;

- Other people are essential for aphasia recovery (social

relationships imbued with spiritual meaning), which offer a better

quality of life, the opportunity to practice language, and

motivation for communication, that are important in the search

for meaning;

- Other forms of spiritual coping can amplify negative reactions

to stress and cause people to engage in inappropriate behavior.

Not

specified

S14 -

Simmons-

Mackie N and

Kagan A35

2007

United States

of America

To describe

aphasia using

the World

Health

Organization

ICF; address

the impact of

contextual

factors on the

aphasia

experience and

participation in

life activities

Theoretical

article

(contains a

first-person

experience

report)

An adult

reporting their

experience of

Broca’s

aphasia and

apraxia of

speech

- Experience of severe activity limitations and participation

restrictions;

- Protection of the family, removing responsibilities, and avoiding

activities create barriers to participation in life situations.

- Feelings of incompetence and dependence (levels of confidence,

optimism, and personal identity are influenced by the social

environment and performance. When confidence and self-esteem

decrease, personal barriers to participation are created).

- Therapy focused on (1) improving expressive speech and

language, (2) obtaining the necessary communicative skills to

perform household chores (3) learning compensatory strategies to

engage in interactions, (4) returning to activities (5) reducing

barriers to participation (training of the partners to help eliminate

attitudinal barriers and group therapy to develop conversational

skills and confidence).

Not

specified

S15 - Thiel L

and Conroy

P36

2022

United

Kingdom

To explore the

experiences of

people with

aphasia living

with language-

related writing

difficulties and

the impact on

their lives

Qualitative

Eight people

with post-

stroke aphasia

and writing

difficulties

(including

adults with

Broca’s

aphasia)

- Participation in society, self-esteem and confidence was

impacted by writing difficulties. Ambulatory

S16 - Worrall

L et al.37

2011

Australia

Understand

what people

with aphasia

want from

services;

to describe the

goals of people

with aphasia;

code objectives

according to

the ICF

Qualitative:

Descriptive

Fifty adults

with post-

stroke aphasia,

including

adults with

expressive

aphasia

- Desire to return to the previous life, communicate basic needs

and opinions (feelings of frustration, hopelessness, isolation, and

depression);

- Aphasia was a higher priority than physical disabilities;

- The need for communication rehabilitation to be connected to

real life and to foster trust;

- Desire for information about aphasia (impaired communication

made it difficult to obtain adequate information), available

services, prognosis, therapy and rehabilitation stages (having

information allowed to take control and participate in decisions

about therapy and rehabilitation);

- Wanting more speech therapy, greater autonomy, dignity and

respect;

- Importance of involvement in social, leisure, and work activities,

as well as the recovery of physical health;

- Wanting to help others;

- The goals are mostly linked to Activities and Participation,

Environmental Factors, Body Functions, and Structures, and

Personal Factors.

Ambulatory

S17 - Worrall

LE et al.38

2017

Australia

To determine

factors that

contribute to

living well with

aphasia in the

first twelve

months after a

stroke

Qualitative:

prospective

longitudinal

cohort study

Fifty-eight

adults with

aphasia,

including

adults with

expressive

aphasia

- Higher family income, greater social network size, being female,

and having milder aphasia were positively associated;

- Graduate or postgraduate educational levels, low mood, and

poor physical functioning were negatively associated with

participation;

- Psychosocial aspects were the most significant predictors;

- Professionals can help spouses communicate effectively with the

person with aphasia, help to return to work by ensuring that the

person with aphasia is safe and well cared for, and ensure that they

have access to information.

Ambulatory

and hospital

context

Legend: S – Study

These results were grouped according to the A-FROM

structure dimensions9 and are presented in Table 3, for

easier data visualization and interpretation. In the

Communication and language environment field, all elements

external to the person that positively and negatively affect

communication and language were included, such as other

people’s services and attitudes. The Language and related

impairments domain include changes in the language and

communication process and facilitating and inhibiting

factors that influence the recovery. The Personal identity,

attitudes and feelings dimension comprises information related

to how the patients see themselves, how they see aphasia

Frade, A.

Artigo

and face the future, feelings, and attitudes, as well as

facilitating and inhibiting factors. The Participation in life

situations area includes data about relationships, roles,

responsibilities, participation in activities, and facilitating

and inhibiting conditions9. Data associated with personal

identity, attitudes, and feelings, and participation in life

situations, were most often mentioned in this literature

review, followed by the language and related impairments

and the communication and language environment,

respectively.

Table 3 – Results presentation (adapted from A-FROM)7

BROCA’S APHASIA EXPERIENCE

COMMUNICATION

AND LANGUAGE

ENVIRONMENT

Facilitating factors - Support and communication strategies; individualized therapeutic interventions; interactions and

context; family and caregivers; speech therapy and health professionals; "Finding a voice" (the voice of a loved one); social

support

S3;S6;S9

Inhibitory factors - Limited rehabilitation services; hospital environment (noisy, fast-paced, constantly changing, not

conducive to effective communication; inconsistent use of communication strategies); interactions and the context; difficulty

in the hospital to deal with people with aphasia

S3;S6;S8

LANGUAGE AND

IMPAIRMENTS

Experience - Difficulty or inability in communicating through words (including expressing feelings and personal experiences);

difficulty in writing; the internal cognitive world is altered; non-verbal skills can be affected; only external stimuli and visual-

perceptual information remained, which acquire particular importance; (verbal) intelligence is compromised; “Had the language

stuck”; need to use strategies to improve communication; speech and hand were incompatible with simultaneous thought

processes; blocks or hinders access to information and services

S1;S5;S8;S9;S11;S16

Facilitating factors - Read the newspaper every day; talk to the animals; independence to direct recovery; Feeling of being

able to help yourself; positivity; individualized therapeutic interventions; hope; communication strategies; reading, sudoku,

Scrabble, writing a shopping list, using the computer, phone, homework prescribed by therapists; rehabilitation, speech therapy,

and health professionals; spirituality

S2;S3;S4;S9;S11;S13

Inhibitory factors - Recovery is extremely difficult and progress is very slowS8.

PERSONAL

IDENTITY,

ATTITUDES AND

FEELINGS

Experience - Devastation and emotional impact; need to reinvent the world around and rebuild life, which has completely

changed; changes in the world emotional interpretation; feeling of frustration due to difficulties, failures and with some of the

therapeutic activities; negative mood changes and depression, with negative emotional, social and behavioral consequences

(social evasion, low mood, persistent sadness and withdrawal from rehabilitation); feeling of "Being in a foreign country"

(uncertainty, unknown, confusion) and the shock of being sick; sensation of disruption; experience of a biographical rupture

with the need to make sense of this new reality; feeling that it is just a number, without being seen as a unique individual and

feeling of isolation; feeling of being a burden to others; often feel stigmatized, but wish to be respected; feeling like a stranger

in your own home (feeling of not belonging); feeling of having lost the most important thing and regret it; inability to envision

a future; feeling of not wanting to be alive; loss of dreams, hope, the planned future and confidence; feelings of anguish about

the future; impact on identity/self; not accepting the inability to speak; feelings of pity and pity from others, self-rejection and

feeling of uselessness; anxiety; feelings of incompetence and dependence; decrease of confidence, optimism and self-esteem;

feelings of frustration, hopelessness, isolation; desire to return to the previous life and communicate their needs and

opinions

S1;S2;S3;S5;S6;S7;S8;S9;S11;S14;S15;S16

Facilitating factors - Use of humor; meeting people in the hospital, in group therapy and the relationship established with

the therapists (source of support, courage, and motivation); family and friends; access to individualized therapeutic

interventions through gradual psychological care; having a positive vision (optimism, hope, determination, and gratitude); hope;

interactions and the context; caregivers; feeling of being heard by the team; recovery; "Finding a voice" (your own voice); contact

with a person who has gone through a similar situation; feeling loved; perception of improvements in communication,

involvement in significant activities; maintaining positivity about the future; speech therapy and psychotherapy; spirituality;

higher family income, self-assessment of successfully living with aphasia and having lighter aphasia

S2;S3;S4;S6;S8;S9;S10;S11;S13;S17

Inhibitory factors - Some therapeutic activities (difficulty or inability to perform simple tasks); psychological support and

limited rehabilitation services (low mood and depression are rarely addressed in rehabilitation); interactions and context;

procedures are done for people instead of being done with people; the focus of health professionals were on their physical

condition, contributing to the lack of attention to psychological needs and social objectives; be infantilized and depersonalized;

visits that invade the private world

S2;S3;S6;S11

PARTICIPATION IN

LIFE SITUATIONS

Experience - Dependence on others; frequent inability to work; the wish to contribute to the community in other ways; need

to give up employment; severe activity limitations, difficulty in performing tasks, needing more time to perform activities;

participation restrictions; inability to compete and succeed in the job market; impact on society participation

S5;S6;S7;S8;S9;S11;S14;S15

Facilitating factors - Having a positive vision (optimism, hope, determination and gratitude); recovery; independence;

interactions and context; "Find a voice"; degree of involvement, commitment and sense of belonging in social activities (the

quality of activities is more important than the quantity), leisure and work; motivation, physical and psychological condition

and communication skills; caregiver and the characteristics of the communication partner (s) (will, skills and knowledge); home

peace and familiarity; feeling of being in charge or in control of life and having a purpose in life; talk about life experiences,

reconnect with the family and focus on communicating on topics that are meaningful to them; speech therapy and

compensatory communication strategies; reducing barriers to participation (partner training and counseling and group therapy);

information about aphasia, available services, prognosis and rehabilitation stages; dignity and respect; higher family income,

greater social network, being female and having mild aphasia

S2;S3;S6;S7;S9;S10;S12;S14;S16;S17

Inhibitory factors - People are not always supported to be independent or make decisions; interactions and context; physical

functioning and fatigue; protection of the family, removing responsibilities; internal personal barriers (fear of failure, feelings

of incompetence and dependence, low confidence, low self-esteem, and negativism); undergraduate or graduate schooling

levels, depressed mood

S3;S6;S9;S14;S17

Legend: S – Study

Pensar Enfermagem / v.27 n.01 / march 2023 | 25

DOI: doi.org/10.56732/pensarenf.v27i1.213

Review article

S1 - Ardila A and Rubio-Bruno S, 201713; S2 - Armstrong E et al., 201223; S3 - Baker C et al., 202024; S4 - Bright F et al., 201325

; S5 - Carcello K and Susan M, 202026;

S6 - Clancy L et al., 201827; S7 - Dalemans RJ et al., 201028; S8 - Green C and Waks L, 200829; S9 - Grohn B et al., 201230; S10 -

Grohn B et al., 201431;

S11 – Hall WA, 196132; S12 - Holland AL et al., 201033; S13 - Laures-Gore JS et al., 201834; S14 - Simmons-Mackie N and Kagan

A, 200735;

S15 - Thiel L and Conroy P, 202236; S16 - Worrall L et al., 201137; S17 - Worrall LE et al., 201738

Personal identity, attitudes and feelings

The need to reinvent the world and rebuild life has emerged,

as well as the negative impact of aphasia

onS1;S2;S3;S5;S6;S7;S8;S9;S11;S14;S15;S16:

-Emotional level: frustration, depression, feeling of

isolation and stigmatization, of "Being in a foreign country",

of being a burden to others, not accepting the inability to

speak and not wanting to be alive, decreased confidence and

self-esteem, anguish, feelings of self-rejection and

worthlessness, anxiety, feelings of incompetence, decreased

optimism and hopelessness;

-Social and behavioural level: social evasion and

disconnection from rehabilitation;

-Identity: feeling of disruption and experience of a

biographical rupture with the need to make sense of their

new reality.

The facilitating factors that influence this dimension

encompassS2;S3;S4;S6;S8;S9;S10;S11;S13;S17:

-Internal conditions: use of humour, hope, language

recovery, optimism, determination and gratitude,

spirituality, and having mild aphasia;

-External conditions: interactions and context, family,

friends, and caregivers, contact with a person who has gone

through a similar situation, speech therapy and

psychotherapy.

The inhibiting factors that emerged include therapeutic

interventions: disability or difficulty in performing some

therapeutic activities, limited psychological support and

rehabilitation services, the procedures being done for people

and not with people, health professionals focus on physical

condition, which contributes to the lack of attention to

psychological needs and depersonalizationS2;S3;S6;S11.

Participation in life situations

Information related to this dimension was the second most

mentioned. The negative impact was evident in roles

(dependence on others), responsibilities, and activities

(inability to work, with the need to give up employment,

difficulty in performing tasks, and participation

restrictions)S5;S6;S7;S8;S9;S11;S14;S15. One study specifically

addresses the impact of writing difficulties on social

participationS15.

In this domain, facilitating factors

includeS2;S3;S6;S7;S9;S10;S12;S14;S16;S17:

Internal conditions: recovery, a feeling of control,

independence, involvement, commitment and sense of

belonging in social activities, motivation, physical and

psychological condition, having a purpose in life, learning

compensatory communication strategies, being female and

having milder aphasia;

External conditions: the context, interactions, caregiver,

speech therapy, clinical condition, recovery information,

greater family income, and greater social network.

The inhibiting factors comprehendS3;S6;S9;S14;S17:

Internal barriers: fear of failure, feelings of incompetence

and dependence, low confidence, low self-esteem and

optimism, graduate or postgraduate educational levels, low

mood, and physical malfunction;

External elements: interactions and context, people weren’t

always supported to be independent or to make decisions

and family protection.

Language and related impairments

It was the third most mentioned dimension. In this context,

were identified: difficulty or inability to communicate

through words, mostly orally but also in writing; difficulty in

expressing feelings and personal experiences; changes in the

internal cognitive world; non-verbal skills affected

sometimes; (verbal) intelligence was compromised, and

speech and hand were incompatible with simultaneous

thought processesS1,S5,S8,S11. This makes accessing adequate

information and services complex, and the need to use other

strategies to improve communicationS1,S8,S9S11,S16. Only one

study explicitly addresses writing difficulties and refers to

their impact on social participation, self-esteem and

confidenceS15.

As facilitating factors for aphasia recovery, the performing

activities emerged (talking with the animals, reading,

sudoku, scrabble, writing a shopping list, using the

computer and the phone, and the homework prescribed by

the therapists); the internal forces (hope, spirituality, feeling

of being able to help oneself), and the external aids

(rehabilitation, speech therapy, and health

professionals)S2;S3;S4;S9;S11;S13. As negative aspects, recovery is

complicated, and progress is ploddingS8.

Communication and language environment

Finally, data within the scope of this domain was the least

mentioned. As positive factors emerged: communication

support and access to individualized therapeutic

interventions; interactions and context; the family and

caregivers; “find a voice” through the voice of a loved one;

feeling heard by the team; social support; use of

communication strategies and the role of speech therapy

and health professionalsS3;S6;S9.

Factors that have a negative influence were identified,

namely: limited rehabilitation services; the hospital

environment (noisy, fast-paced, constantly changing, not

Frade, A.

Artigo

conducive to effective communication and the inconsistent

use of communication strategies); the interactions and

context, and the inability at the hospital to deal with the

person with aphasiaS3;S6;S9.

Discussion

Summary of evidence

The results of this Scoping Review are aligned with the

impact of aphasia on the fundamental needs described by

Thompson (2014)1. Corresponding to personal identity,

attitudes and feelings, Thompson (2014)1 defends that aphasia

impacts identity; affection (by the difficulty in expressing

emotions and affection), and people feel perceived as a

physical presence rather than a person. Regarding

Participation in life situations, Thompson (2014)1 states that

aphasia impacts freedom (it is a threat to autonomy, and

people have difficulty in expressing choices and claiming

rights), participation (with feelings of isolation) and

subsistence (by the inability to communicate verbally).

Related Language and related impairments, aphasia affects

protection (because of the difficulty in asking for support

and the inability to alert)1.

Broca’s aphasia has a tremendous negative effect, and the

psychosocial impact of this clinical condition was clear. It

was also clear that therapeutic interventionsS3, context and

interactionsS6, health professionalsS9,S11,S17, hopeS4,

spiritualityS13, and psychosocial factors influence the

experience of Broca’s aphasia.

According to Thompson and McKeever (2014)39, aphasia

has a negative impact on relationships by denying access to

support networks, which leads to isolation. Aphasia also

results in a ‘loss of self’, intensified by inadequate healthcare

communication strategies39.

Concerning the influence of therapeutic interventions and

health professionals, a study developed to explore the

factors influencing the satisfaction and dissatisfaction of

people with aphasia regarding their health care identified

seven areas of care19. Two of these areas are Manner and

Methods of Service Delivery (related to the individual

behaviour of health professionals, health professionals’

approach to health care, a health professional’s personality,

the level of inclusion of the person with aphasia,

understanding shown to the person, the level of

involvement in decision-making, goal-setting and therapy

activities) and Information, Communication and

Knowledge19.

About hope, a study carried out concluded that hope could

be important for people with aphasia, and the authors

identified it being experienced in two ways: Simply "having"

hope (broad feeling, but passive, which seems to be the main

form of hope) and Actively hoping (an active and future-

oriented form of hope)S4. In that same study, hope seems

related to how people get involved in rehabilitation and how

it can influence it. The factors that influence hope were

identified as: family; friends; health professionals (either

supporting or reducing) and other patients; uncertainty

about the future; seeing hope with a double face (positive

and negative aspect) and a sense of disruption (in identity

and/or involvement in meaningful activities)S4. These

factors are influenced by past experiences, present reality,

and perceived futureS4. In line with this, a study developed

more recently concluded that social support, a sense of

progress, and engagement in meaningful activities and

interactions seem essential in supporting people (re)develop

hopes for their future40.

On the sphere of spirituality, according to a studyS13, it could

be seen in two ways: as a higher power that is important for

the understanding of oneself, for recovery, communication

improvement, being in control of events, and directing

recovery, which does not involve much personal activity;

and/or as a relationship with a higher power as a source of

help and strength, with more frequent religious and spiritual

practices (seeking the Sacred for comfort, support and to

understand the aphasia meaning). Other people can also be

essential for aphasia recovery (social relationships imbued

with spiritual meaning), which offer a better quality of life,

an opportunity to practice language, motivation for

communication and are essential in search of meaningS13.

Still, other forms of spiritual coping can be associated with

severe existential suffering in this context. They can amplify

adverse reactions to stress and cause people to engage in

inappropriate behavioursS13.

Regarding interactions and contextS6, it can help or hinder

making sense of the experience, the emotional burden, and

how the patient gets involved in rehabilitation. In a study

carried out, three broad themes were identified: "being in a

foreign country", "finding a voice", and "being just a number"S6.

"Being in a foreign country" includes uncertainty and confusion

regarding the condition, the hospital, dependence on others,

and the shock of being ill aggravated by the ward

environment (noisy, fast-paced, constantly changing, not

conducive to effective communication and the inconsistent

use of communication strategies); "Finding a voice" was

fundamental to make sense of what happened and for

adaptationS6. Feeling like "Just being a number" instead of

being seen as a unique individual is related to the perspective

that the focus of health professionals is the physical

condition, contributing to the lack of attention to

psychological needs and social goals, with the perception

that the team focuses in the technical procedures of

rehabilitation and not in the personS6.

Limitations of the study

The search was conducted in only four databases and only

articles written in English, Portuguese and Spanish were

included, which may have limited access to other articles

with relevant contributions to this review. Another

limitation is that it was not possible to access two full-text

articles. It is important to point out that not including theses,

dissertations and “grey” literature in this review may have

contributed to not getting important scientific evidence,

which can also represent a limitation.

Pensar Enfermagem / v.27 n.01 / march 2023 | 27

DOI: doi.org/10.56732/pensarenf.v27i1.213

Review article

Conclusion

This review aimed to map the available scientific evidence

on the experience of people who have gone through a

Broca’s aphasia period. The Scoping Review enabled us to

answer the research question and deepen the understanding

of the phenomenon under study. More precisely, it allowed

recognizing the negative impact and changes resulting from

Broca’s aphasia, the feelings associated, the specific needs,

factors that influenced the experience, what support and

resources people would like to have had, from the

perspective of those who experienced this clinical condition.

In this study, data related to Personal identity, attitudes, feelings,

and Participation in life situations were the most often

mentioned in the literature, followed by the Language and

related impairments and the Communication and language

environment, respectively, regarding Broca’s aphasia

experience.

The importance of health professionals, therapeutic

interventions, spirituality, hope, context, interactions, and

psychosocial factors became clear in caring for patients with

Broca’s aphasia.

The knowledge gained in this Scoping Review allows health

professionals to better understand the needs of people with

Broca’s aphasia and to implement appropriate

improvements to health care and service delivery19. This

includes improvements in nursing care, which will promote

well-being, enhancing safety, reducing harm, and improving

satisfaction with the care provided.

This review shows that it is essential to continue

investigating how people report the experience of having

lived a period of Broca’s aphasia to comprehend better the

experience and the needs of this population and continually

improve the assistance of people with this clinical condition.

Considering the difficulty in this review in finding studies

only with people diagnosed with Broca’s aphasia, as a

suggestion for future research, it would be pertinent to

investigate how people report the experience of having lived

a period of Broca’s aphasia, focusing only on participants

who have fully recovered from this specific type of aphasia.

Besides that, it would be pertinent to investigate the current

practice regarding teaching about the experience of Broca’s

aphasia in health-related professions, including nursing. It

would also be helpful to study the impact of what is already

known about the experience of this clinical condition in the

management of health care in contexts that provide care to

people with Broca’s aphasia.

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| 30

Pensar Enfermagem / v.27 n.01 / april 2023

DOI: 10.56732/pensarenf.v27i1.212

Quantitative Original Article

How to cite this article: Carvalho J, Aguiar P. Nurses adverse events report adding safety to pediatric

nursing. Pensar Enf [Internet]. 2023 Apr; 27(1):

30-36

. Available from:

https://doi.org/10.56732/pensarenf.v27i1.212

Nurses adverse events report adding safety to

pediatric nursing

Abstract

Introduction

Adverse Events remain a current challenge in healthcare, being defined as incidents that

resulted in unnecessary harm to the patient. The choice of the pediatric population the

object of this study is based on certain characteristics making it the most susceptible to

Adverse Events. Reporting them is a key action of the strategy to reduce its occurrence,

while Nurses remain essential elements to the process. The ultimate goal is Patient Safety,

the reduction of the risk of unnecessary healthcare-related harm to an acceptable minimum.

Objective

Describe Nurses’ Adherence to Adverse Events Reporting and the Factors associated with

it in a Pediatric setting.

Methods

A Cross-sectional Observational Study is presented, based on a survey conducted in the

Pediatrics Department of a hospital. The study included 88 categorical variables, related to

respondents' perception of Adverse Events, Errors, Incidents and Patient Safety.

Univariable, bivariable, and correlation analysis were used.

Results

A total of 69% of nurses did not report any Adverse Event in 2019. The events more

frequently reported were those with the most serious consequences for the patients (54%)

and those related to organizational dysfunctions of the institution (74-90%). Factors which

facilitate the occurrence of Adverse Events include the lack of human resources (19%),

communication failures and overtime (17%), and the main barrier to Reporting is forgetting

to do so when there is a greater workload (63%).

Conclusion

A low percentage of reporting related to nurses’ adherence to adverse events was found in

this investigation. This highlighted the need to invest in the institution’s Safety Culture by

enhancing healthcare professionals’ awareness of the importance of their role in improving

Patient Safety. Integrating notification into the daily practice of professionals, using

continuous awareness enhancement, strengthening multidisciplinary teams, investing in

communication and down grading workload is essential and can facilitate improvement.

Keywords

Patient Safety; Risk Management; Quality Improvement; Adverse Event; Medical Error;

Pediatric Nursing.

Joana Isabel Cordeiro e Carvalho1

orcid.org/0000-0002-4249-7356

Pedro Aguiar2

orcid.org/0000-0002-0074-7732

1Master. Neonatology Unit. Department of Pediatrics.

Santa Maria Hospital. University Hospital Centre,

Lisbon North

2PhD. National School of Public Health - Nova

University Lisbon. Comprehensive Health Research

Centre – Nova University Lisbon. Public Health

Research Centre - Nova University Lisbon.

Corresponding author:

Joana Carvalho

E-mail: joanaisabelecarvalho@gmail.com

Received: 13.11.2022

Accepted: 16.03.2023

Pensar Enfermagem / v.27 n.01 / april 2023 | 31

DOI: 10.56732/pensarenf.v27i1.212

Quantitative Original Article

Introduction

Adverse Events (AE), defined as incidents that resulted in

unnecessary harm to the patient,1 remain a serious Public

Health problem.2 They occur in hospital, primary health care

and long-term care settings.3 Regardless of context, they

affect patients and their family, have direct consequences in

professional, organizational, economic, and social levels,

leading to a lack of trust in health providers and

organizations where they occur.3-4

Errors or AE in healthcare aren’t new, going back more than

150 years, when the first records were collected by Florence

Nightingale in the Crimean War.5 Several figures intervened

and promoted Quality Improvement and Patient Safety, as

highlighted by Ernest Codman, Avedis Donabedian and the

Institute of Medicine.5-10 A journey with a single purpose:

harmless, timely, and undelayed care, based on evidence and

guidelines, for all patients, responding to their individual and

specific needs.11

However, it is unequivocal that the scientific-technological

evolution, which allows advances in medicine, generates

situations leading to Errors and AE. Thus, it becomes

necessary to implement strategies to avoid and minimize

these situations.

Reporting potentially dangerous situations for the patient,

Near Misses, Errors and AE is a strong strategy in ensuring

Patient Safety.12-13 Reporting generates awareness of an

event with a negative impact on the patient, causing certain

harmful consequences, of the factors leading to this event,

and of the strategies that can be identified and adopted to

avoid it.14 With the collected data, it is possible to build

databases for future analysis by the Risk Management Team,

but also share the information with the multidisciplinary

team and the rest of the Institution. With this information it

is possible to identify factors leading to certain events and

develop specific practices to prevent them, and other similar

situations.12-13 Thus, it contributes to build a Safety Culture

in the institution, based on trust and shared experiences,

without fear of punishment, bearing in mind Patient Safety

guidelines during their stay.10,15-16

Although health professionals are progressively more aware

of the need to Report, it still falls below expectations.17-18

Several reasons have been given to justify this low

adherence, including fear of blame, of administrative and

legal sanctions, resistance to bureaucracy, the perception

that reports have no impact on the quality of care, the lack

of organizational support, late or inadequate feedback, and

the lack of knowledge about the Adverse Events Reporting

System (AERS).17,19-21

In addition, the lack of human resources in health, both

physicians and nurses, may result in work hours and

providers function overload, leading to the reorganization

of health care practices. Professionals focus their attention

on patients and the rapid resolution of potentially dangerous

situations or Errors that may have occurred, leaving

bureaucratic issues in the background, such as AE

Reporting. We emphasize that this behavior does not favor

Patient Safety or Quality of Care in the long term because it

does not allow an anticipation of dangerous situations, nor

the context in which Errors occur, preventing it from being

repeated in the future.

On the other hand, adherence to reporting seems to depend

on the severity level of the Event, the type of Incident and

the professional.20 There is a consensus that healthcare

professionals more frequently report the most serious

events which include death (tragic harm), disability

(moderate harm) and severe harm caused to the patient,

when compared to non-harmful events or risk situations.22-

24 Nurses are identified as essential to reporting, not only

because they are on the front line of care, but also because

they spend more time with patients. Scientific evidence

shows that nurses are three times more likely to report when

compared to physicians.20

It is unanimously recognized that the pediatric population is

more susceptible to AE.25 In addition to the health

condition, due to its intrinsic characteristics, it is subjected

to complex health care, in different contexts, with multiple

players, during which it is possible to identify opportunities

for communication failures between the team, that may, in

the end, result in potentially dangerous situations for

patients.26

Some of the Errors, described in the literature, that

characterize this population include: Medication and total

parenteral feeding errors; Respiratory care, resuscitation,

and ventilation errors; Invasive procedure errors and

Healthcare-Associated Infections; Patient identification

errors; Diagnostic errors;10 Breast milk errors;27-28 and

Healthcare-associated Infections.29 Medication errors are

the most prevalent and reported in the different care

settings.10,15,30-32

In association with AE Report, several measures have been

taken to prevent the occurrence of Errors in this population,

which deserve attention: the adaptation of clinical

guidelines, use of the double-check method,33 trigger tools,9

barcode systems,30-31 among others.

In this sense it was elaborated a study which objective was

to describe Nurses’ Adherence to Adverse Events

Reporting and the Factors associated with it in a Pediatric

setting. The results confirm the interest in deepening the

problem and consequences of AE, the need to continue to

invest in Reporting, and the essential role of Nurses in the

process.

Materials and Methods

The study was observational, cross-sectional, and

quantitative in nature, with the objective of determining

nurses' adherence to Adverse Event Reporting and the

factors associated with it, in the Pediatric Department of a

general hospital in Lisbon.

The subjects of this study were Nurses, Specialist Nurses

and Nurse Managers working in the department's services,

in a total of 192 nurses. The recruitment of participants was

performed through convenience sampling, consisting of all

nurses who were working in the period between November

2019 and January 2020. A total of 102 nurses agreed to

participate by completing the survey.

32 | Carvalho, J.

Article

Data were collected through a survey, after permission was

granted by the author, Paula Bruno (2010), published in

“Registo de Incidentes e Eventos Adversos: Implicações

Jurídicas da Implementação em Portugal”. The survey

includes 13 closed questions, distributed into two groups:

Characterization of the sample (questions 1, 2, 3, 4 and 5)

and Respondents' perceptions of AE, Error, Incident

Reporting and Patient Safety (questions 6, 7, 8, 9, 10, 11, 12,

and 13). Slight changes were made to the original survey, to

adapt it to the subjects of the study, without altering its

characteristics. The survey was chosen because it assessed

the reporting of adverse events by health professionals,

intended in this study. The survey was given to the Head

Nurses, who were responsible for delivering them

individually to each nurse under them. They were later

collected by the researcher in a sealed, unmarked envelope

to protect participants’ privacy and confidentiality.

Data was analyzed using the Statistical Package for the

Social Science (SPSS), version 26, with approximately 88

categorical variables. Univariable analysis, presenting

frequency distribution tables (%), bivariable analysis using

the Chi-square test for comparison of proportions and

analysis of correlations of ordinal variables using Spearman's

Correlation Coefficient were performed. Fisher's Exact Test

was used in place of the Chi-square Test for low expected

frequencies, while the 5% significance level was used in

hypothesis testing.

The research work was confidential, with guaranteed

anonymity of the data throughout the process. Participation

in the study was voluntary (without any penalty) and

anonymous. A cover sheet was attached to each survey

corresponding to the informed consent. To ensure the

anonymity and confidentiality of the information, the

consent form was separated from the rest of the survey and

placed in a separate envelope. The identity of the

participants was not known to the researcher or to any third

party, and the data remained confidential during and after

the study. The research process began with requests for

permission to conduct the study, which included the

following formal written requests: to the author of the

survey, to the Director of the Pediatrics Department, to the

Nurse Director and to the Ethics Committee of the hospital.

Consent was obtained from all the above.

Results

This chapter presents the results obtained based on the

questionnaires applied, representing the Nurses' perception

on the questions asked.34

Table 1 - Characteristics of the Pediatric Nurses in the sample.

Variable under review

Variable Category

Count:

Absolute

frequency

Percentage:

Relative

frequency

(n=)

Sex

Female

94,1

(n=102)

Male

5,9

Age Group

21 a 30 years

32,4

(n=102)

31 a 40 years

29,4

41 a 50 years

16,7

51 a 60 years

17,6

>60 years

3,9

Years of Work

<1 year

16,7

(n=102)

1 a 10 years

24,5

10 a 20 years

26,5

20 a 30 years

22,5

30 a 40 years

9,8

Function/Title

Nurse

71,6

(n=102)

Nurse Specialist

26,5

Nurse Manager

2,0

Unit Typology

Ambulatory

16,7

,(n=102)

Emergency and Intensive Care

62,7

Pediatrics

18,6

As showed in table 1, the sample was mostly composed of

female nurses (94.1%), aged between 21 and 30 years

(32.4%). Most professionals work at the institution for 1 to

30 years (73%), and the category of 10 to 20 years is the

most prevalent, reaching 26.5% of the sample. The most

prevalent position is that of nurse (71.6%). Approximately

62.7% of the sample worked in the Emergency and

Intensive Care services, followed by the Pediatric Ward,

with 18.6%, and Ambulatory Care, with 16.7%.

When asked about the AERS, about 98% of the sample

reported knowing that the hospital has one of these systems,

but only 59.8% agreed with it. About 93.1% of the sample

knew that the hospital under study participates in

Accreditation Programs, namely the Pediatrics Department.

Pensar Enfermagem / v.27 n.01 / april 2023 | 33

DOI: 10.56732/pensarenf.v27i1.212

Quantitative Original Article

In 98% of nurses who are aware of the existence of an

AERS, 69% answered not having reported any AE in the

last year and 31% have reported at least one AE. The most

frequently reported AEs are those with more serious

consequences to the patient, such as tragic harm (58%) and

moderate harm (33%). AEs with no danger to the patient

and Near Misses are rarely reported. The service with the

highest number of AEs reported was Emergency and

Intensive Care (38%), followed by Medical Pediatrics (21%)

and Ambulatory Care (18%).

Evaluating the report according to the severity of the AE

and the nurses' characteristics (gender, age group and

position in the institution), we found that there seems to be

no statistically significant association between the frequency

of Reporting of the different events and the nurses'

characteristics.

With regard to the type of AEs, we found that AEs related

to organizational dysfunctions of the institution occurred

more frequently: malfunction or defect of medical

materials/devices (89%), lack of

material/clothing/equipment (82.4%), lack of clinical

material and equipment (77.5%), computer system

malfunctions (74.5%) and conflicts with the patient/family

(73.5%). Product or drug prescription errors (71.6%),

product or drug administration errors (64.7%), incorrectly

filled or illegible prescriptions (65.7%), and healthcare-

associated infections (52.9%) stand out as frequent

occurrences. One of the questions allowed us to analyze the

sample's perception regarding the AEs that occur and those

that are recorded. According to the nurses' perception, we

found that the AEs that occur more frequently are those

with a higher percentage of notification.

According to the nurses' perception, the most important

factor contributing to the occurrence of AEs was the lack of

human resources (19%), followed by communication

failures and work overload (both with 17%). The main

barrier to Reporting was forgetting to do so when there was

a heavy workload (63%).

Discussion

Healthcare professionals recognize the importance of the

AE report for Patient Safety and Quality of Care

Improvement,17 as well as the need for a local and national

system for AE reporting.24 Despite 98% of the nurses

knowing that the hospital has an AERS, only 59,8% agreed

with it, which is in line with values found in other

studies.24,35 This value raises some questions, namely nurses'

understanding of the system and its adequate use, which

AEs to report, how to report and also the development of

the feedback process.

About 69% of the nurses refer that they did not report any

AE in the previous year, showing a low adherence rate.

However, it seems to us that there has been an increase in

awareness for AE Notification, since in 2011 non-adherence

was 80%18 at national level. More recent data from the

National Patient Safety Agency36 shows an increase in AE

reporting between 2013 and 2015. The observed

improvement, a small step in the long path ahead, should

safeguard the need for professionals’ training, elaboration of

strategies and institutional norms that allow the growth of a

Safety Culture.

The level of AE severity presents itself as a major factor for

Adherence to Reporting. The study data indicate that AEs

causing tragic harm (death) (58%) and moderate harm

(disability) (33%) were more frequently reported, when

compared to non-harmful events or risk situations, which

aligns with previous studies.20,22-24

The privilege of reporting serious events instead of all

situations leads to a lack of data on the real number of AEs

that occurred, restricting the prevention of potentially

dangerous situations for the patient in future care. The need

to report all types of AEs, even those that had no impact on

the patient, is imperative for the learning process to be as

useful as possible and the implemented interventions to

address the identified difficulties.12-13,37

The types of AE that occurred more frequently were related

to organizational dysfunctions of the institution,

corresponding to the results found by Bruno24 and

Martins.35 However, at the international level, the most

frequent AEs in Pediatrics are those related to

medication.10,15,30,32,38 In this study, they present high

percentages of occurrence, with product or drug

prescription errors, product or drug administration errors

and incorrectly filled or illegible prescriptions standing out.

On the other hand, according to the nurses' perception, the

AEs that occur more frequently are those with the highest

percentage of recording.

The difference in AE Reporting percentages detected

between the different services may derive from the fact that

the sample was mostly composed of nurses from the

Emergency and Intensive Care unit (62.7%) and/or because

this is one of the services with a higher propensity for the

occurrence of AEs.31

Nurses pointed out the lack of human resources followed

by communication failures and the overload of working

hours as facilitating factors for the occurrence of AEs, and

these results coincide with the literature findings. This is a

recurring situation in the health area, where the lack of

human resources remains a reality,39 leading to an increase

in the working hours and the functional overload of health

providers.16,40

Communication is essential to ensure Patient Safety and

Quality of Care and deserves special attention. The

Portuguese General Health Direction41 calls for an effective

communication between health professionals, stating that

communication failures, with 70% of the main causes of

AEs, occur during the transition of care. Patients and family

members can be key allies of health professionals to ensure

effective and safe communication, since they are the ones

who know the clinical situation best and are able to detect

miscommunication at shift transitions.10

According to the perception of the nurses, the main reason

for missing the communication with AERS is being

forgetfulness when there is a heavy workload. Working

conditions lead to the need to reorganize the health care

provided by focusing on patients and on the quick

resolution of unexpected or unplanned situations, leaving

34 | Carvalho, J.

Article

issues such as AE Reporting in the background. We believe

that this behavior, even if it seems the most appropriate at

the moment, will not favor Patient Safety and Quality of

Care in the long term.

In these contexts, it becomes essential to integrate AE,

Error, Near Misses and potentially dangerous situations for

the patient report into the daily practice of professionals.

The steps to be taken include continuous awareness-raising,

strengthening multidisciplinary teams, improving

communication and lightening the workload, and at the

same time, greater dissemination and accessibility to the

system.

At the national level, we advocate greater specificity and

detail in the development of Health Policies with a view to

promote the Report of AEs in a transversal way, as a

framework and path to be followed. In terms of Risk

Management, the Report of Incidents, Adverse Events and

also Near Misses should be encouraged by all professionals,

with a view to resolving the potentially dangerous situations

identified and preventing future AEs,12-13 both for patients

and for the health professionals themselves.

At last, it's crucial to value and invest in the qualification of

professionals in Risk Management and Patient Safety, in the

elaboration of Guideline Standards, as well as the

establishment of teams with experience in AE cause analysis

and in the preventive identification of possible failures in the

system.

To reduce errors in the pediatric setting is recommended the

use of pre-made solutions, therapeutic formulas for the

pediatric population, barcode system when administering

medication or identifying patients, development of

protocols.30-31 Peer review, clinical quality improvement and

education, staff training through simulation of clinical

situations, and the incorporation of a drug library in the

infusion pumps, with a safe dose range that alarms when the

programmed dose does not fall within this range, are also

advocated.9 The use of computerized electronic prescribing

and therapeutic dispensing systems demonstrated a

significant decrease in medication-related errors. The use of

trigger tools also seems to have a positive positive impact in

preventing AEs by increasing the detection of errors in

pediatrics.9

This research aimed to describe the adherence to adverse

event reporting in pediatrics, based on the nurses'

perception of such reporting. A future study, with more

refined specifications, may help to clarify some of the issues

raised and allow corrective measures to facilitate the AERS

improvement.

Conclusion

The growing evolution and demand for the provision of safe

care, with minimal risk to the patient and appropriate to

their characteristics and needs, has become the motto of

health care worldwide. However, and despite the strategies

to reduce the risk and negative consequences for the patient,

the occurrence of AEs remains a reality.

Reporting of all potentially dangerous situations or

situations that have led to negative consequences,

particularly for the patient, should be instituted to avoid the

normalization and acceptance of errors as routine, as if they

were a mandatory consequence of the professionals' practice

or performance.

Nurses, as part of the frontline of health care delivery, with

a closer contact with the patient and family, can become

more aware and experienced in the recognition of situations

potentially conducive to the occurrence of Errors and AEs,

as well as in their identification, becoming more

accountable.

If, on the one hand, the results obtained point to the need

to promote the institution's Safety Culture, making health

professionals aware of the importance of their role, as

individuals and as a multidisciplinary team, to improve

Patient Safety, on the other hand, we believe that nurses, as

part of the front line of care, are also frequently subjected to

AEs, which should also be reported.

We believe that the involvement of health professionals in

reporting programs adherence will be greater and stronger

if the dissemination, the access to the platform, and the

awareness of its use is implemented. As well as the

recognition of the real benefits for the patient, the

knowledge of the results and corrective measures activated,

and even the evolution and interactivity in the operation of

the system are improved. If this is understood as transversal

to health, in an integrative vision of the duties and rights

concerning the professionals themselves, they will be more

aware and motivated to individual and group participation.

One limitation of the study was the time gap between data

collection and dissemination, because it is the result of a

Master’s Thesis. Even so, it’s considered important to

summarize and share this work due to the clear implications

for nursing practice, for patients’ benefit, and for the quality

and safety of health care improvement.

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| 37

Pensar Enfermagem / v.27 n.01 / june 2023

DOI: 10.56732/pensarenf.v27i1.215

Review article

Interventions for self-management in adolescents

with Type 1 Diabetes: a scoping review protocol

Abstract

Introduction

Adolescent development involves building autonomy and progressive independence from

parental supervision. Challenges that are more complex when they have a diagnosis of type

1 diabetes and have to take responsibility for managing their condition. At this age, it is

crucial to implement interventions to promote self-management skills in adolescents with

type 1 diabetes.

Objective

The aim of this scoping review is to identify and map interventions that promote self-

management skills in adolescents with type 1 diabetes.

Methods

The methodology will follow the Joanna Briggs Institute recommendations for scoping

reviews. Studies published in English, Portuguese and Spanish between 2009-2021 will be

considered, with no geographical or cultural limitations. The process of data analysis,

extraction, and synthesis will be performed by two independent reviewers, based on the

inclusion criteria. The results of the study selection will be presented in a Preferred

Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram for

scoping reviews. This protocol is registered at Open Science Framework

https://osf.io/z6wbj.

Results

Mapping the interventions for adolescents with type 1 diabetes, may constitute a tool for

the design of a structured intervention to promote self-management behaviour in

adolescents with type 1 diabetes and contribute to the dissemination of available evidence

on the topic.

Conclusion

The results from this review are expected to gather relevant information that will serve as a

basis for the development of a nursing intervention for adolescents with diabetes.

Keywords

Adolescent; Diabetes Mellitus, Type 1; Program Evaluation; Self-Management.

How to cite this article: Flora M, Malheiro I, Barros L, Coelho A N. Intervenções para a autogestão em

adolescentes com Diabetes Tipo 1: um protocolo de revisão scoping. Pensar Enf [Internet]. 2023 Jun;

27(1):37-44. Available from: https://doi.org/10.56732/pensarenf.v27i1.215

Marília Costa Flora1

orcid.org/0000-0002-9934-9143

Maria Isabel Dias Costa Malheiro2

orcid.org/0000-0002-9093-4821

Luísa Barros3

orcid.org/0000-0002-5075-0104

Adriana Neves Coelho4

orcid.org/0000-0002-6381-7128

1Master. Nursing School of Coimbra, Coimbra,

Portugal.

Nursing Research, Innovation and

Development Centre of Lisbon (CIDNUR).

2PhD. Nursing School of Lisbon, Lisbon, Portugal.

Nursing Research, Innovation and Development

Centre of Lisbon (CIDNUR).

3PhD. Psychology Faculty, University of Lisbon,

Lisbon, Portugal.

4PhD. The Health Sciences Research Unit: Nursing

(UICISA:E), Nursing School of Coimbra (ESEnfC),

Coimbra, Portugal. Portugal Centre for Evidence-

Based Practice: A JBI Centre of Excellence, Coimbra,

Portugal.

Corresponding author

Marília Flora

E-mail: liaflora@gmail.com

Received: 23.11.2022

Accepted: 09.03.2023

| Flora, M.

Review article

Worldwide, more than 1.1 million children and adolescents

are living with diabetes, and the incidence of Type 1

Diabetes Mellitus (T1D) has been increasing, particularly at

ages below 15, with a higher prevalence in Europe than in

other regions.1

Adolescents are in a crucial phase for building their

autonomy, becoming progressively independent from their

parents and assuming more and more responsibility in

decision-making.2 During this phase, education and training

is essential for promoting T1D self-management.3 Once

there is no cure, treating T1D implies fostering healthy

growth to minimize the impact of this disease.3 The ultimate

goal for adolescents with T1D is to assume increased self-

care responsibility for managing diabetes.4

T1D is a chronic disease caused by an autoimmune reaction

in which the immune system destroys the pancreas beta

cells, preventing insulin production.5 The treatment of

diabetes is demanding and complex requiring continuous

control carried out through the management of the

following triad: diet, physical exercise, and tuning of insulin

doses.6 Regarding diet, counting carbohydrates is a complex

and challenging task (complex carbohydrates and simple

carbohydrates, e.g., glucose, fructose, lactose, sucrose, and

maltose). This task becomes even more complex with the

management of insulin and diet during physical

exercise/sports.6,7 Thus, managing T1D entails deep

thought on behaviors and decision-making, which is a

significant responsibility for adolescents and their families.8

Self-management focuses on self-regulation of chronic

disease and management of risk factors, and includes goal-

setting, self-monitoring, decision-making, self-care planning

and participation, self-assessment, and management of

physical, emotional, and cognitive responses associated with

behavior change.9 Promoting self-management is associated

with encouraging self-efficacy, knowledge, functionality,

and social interactions, improving mental health, providing

effective management of symptoms, a better quality of life,

and lowering the need for emergency services.10,11An

adequate self-management of the disease also drives better

health care and resource management12, preventing or

delaying secondary conditions such as micro and

macrovascular complications.13,14 Self-management of a

chronic condition is the individual ability to manage the

symptoms and treatment, physical repercussions,

psychosocial and emotional dimensions, and changes in the

lifestyle, which are inherent to chronic illness.15 Kate Lorig16

highlighted three self-management tasks (medical

management, role management and emotional

management) and several self-management skills (problem-

solving, decision-making, resource utilization, the formation

of a patient-provider partnership, action planning, and self-

tailoring).

To manage T1D is essential to have well-planned and

organized strategies and well-defined objectives.9

Management of diabetes involves knowledge about the

pathophysiologic of diabetes and acute and chronic

complications of the disease: hypo and hyperglycaemia,

insulin administration, measurement of blood glucose, and

health maintenance (diet, and physical exercise).17

Self-management support is the process of educating and

supporting people with a chronic condition, helping them

and their families understand their central role in managing

their disease.18 It includes a commitment to patient-centered

care. Implementing programs with specific strategies could

be helpful. Structured programs for T1D should integrate

topics within education, the definition of goals and

objectives, social inclusion, and self-efficiency associated

with glycaemic control measures.10 These programs

comprise psychoeducational principles, training of daily

routines, continuous support in promoting self-

management, parental engagement and participation, and

the use of new cognitive-behavioral techniques and new

technologies as motivators for adolescents is

recommended.11

It is up to the health teams within a multidisciplinary

network, particularly nurses, to facilitate and encourage the

self-management of diabetes in adolescents, therefore

contributing to a healthier and more capable population in

managing their disease.11 The team's intervention focuses on

the individual, their family, the group, and the community;

their intervention can occur in many contexts: work-based

during regular appointments, home-based, community-

based, school-based, or informal scenarios such as summer

camps.19

A preliminary search of MEDLINE (PubMed), CINAHL

(EBSCO), the Cochrane Database of Systematic Reviews

and JBI Evidence Synthesis, PROSPERO, and Open

Science Framework (OSF) was conducted, and no current

or underway systematic reviews or scoping reviews

(published or in progress) on the topic were identified.

More precisely, this scoping review seeks to answer the

following questions:

a) What are the characteristics of the interventions that

promote self-management in adolescents with Type 1

Diabetes?

b) Who are the professionals responsible for implementing

the interventions?

c) What are the indicators of change in self-management

skills after the intervention?

This scoping review aims to map interventions that promote

self-management skills in adolescents with type 1 diabetes.

Methods

This scoping review follows the Joanna Briggs Institute

(JBI) guidelines for scoping reviews.20,21 This review

protocol was registered in the Open Science Framework

(OSF) (https://osf.io/z6wbj /accessed on 11 November

2022).

Eligibility criteria

Participants

This scoping review will consider studies focused on

interventions to adolescents aged 10 to 19 years old with

T1D and/or their parents/family, that have participated in

an intervention focused on self-management of diabetes,

developed, or implemented by any health professionals.

*OUSPEVDUJPO

Pensar Enfermagem / v.27 n.01 / june 2023 | 39

DOI: 10.56732/pensarenf.v27i1.215

Review article

Concept

The concept considered in this review will include studies

that analyse programs and interventions to promote self-

management in adolescents with T1D: medical

management, role management, and emotional

management. Programs or interventions that do not show

results will be excluded.

Context

This scoping review will consider all interventions

implemented and evaluated to promote self-management

in adolescents carried out in any context. The context may

include interventions via virtual or attendance in a health

care setting (hospital or ambulatory), diabetic camps, or at

a person's home.

Types of Sources

This scoping review aims to identify and map any

interventions developed to promote self-management in

adolescents with T1D. For this purpose, the authors will

consider experimental and quasi-experimental study

designs, including randomized controlled trials, non-

randomized controlled trials, before and after studies.

Qualitative studies focusing on qualitative data will be

included, but are not limited to, designs such as

phenomenology, grounded theory, ethnography, qualitative

description, action research. In addition, systematic reviews

that meet the inclusion criteria will also be considered.

Search strategy

The search strategy will aim to locate both published and

unpublished studies. This review will use a three-step

search strategy. An initial limited search of MEDLINE (via

Pubmed) and CINAHL (via EBSCO) to identify articles on

the topic. We used the text words contained in the titles and

abstracts of relevant papers and the index terms "AND" or

"OR" to describe the articles were used to develop a

complete search strategy. The search strategy, including all

identified keywords and index terms, will be adapted for

each database and information source (Table

1). Afterwards, we will screen the reference list of all

included articles for additional studies. Studies published in

English, Portuguese and Spanish between 2009-2021 will

be considered.

The databases to be searched will include CINAHL Plus

with Full Text, PubMed, Cochrane Central Register of

Controlled Trials, LILACS, Scopus, Library, Information

Science & Technology Abstracts, PsycINFO, JBI Connect,

and the Cochrane Database of Systematic Reviews. Will

also include sources of unpublished studies and grey

literature from the RCAAP – Repositório Científico de

Acesso Aberto de Portugal.

Table 1 – Search Strategy conduced in March 2021

CINAHL complete Cochrane Central Register of Controlled Trials; Nursing & Allied Health Collection; Library, Information

Science & Technology Abstracts (via EBSCO)

Results

Retrieved

TI ( adolescen* OR teen* OR youth* OR young* ) AND TI ( diabetes OR "diabetes mellitus, type 1" OR T1DM

OR "diabetes mellitus type 1" OR "DM1" OR "type 1 diabetes" ) AND TI ( manage* OR "self management" OR

"self care" OR “self-efficacy” OR “health and life quality” OR " quality of life" OR "glycaemic control" OR “glycemic

control” OR Glycosylated hemoglobin* OR hemoglobin A* ) AND AB ( intervention* OR program* OR strateg*

OR project* OR action* OR function* OR care* OR preparation OR education OR instruction* OR train* ).

Filters: Boleano, English, Portuguese and Spanish, from 2009-2021

485

TI ( adolescen* OR teen* OR youth* OR young* ) AND TI ( diabetes OR "diabetes mellitus, type 1" OR T1DM

OR "diabetes mellitus type 1" OR "DM1" OR "type 1 diabetes" ) AND TI ( manage* OR "self management" OR

"self care" OR “self-efficacy” OR “health and life quality” OR " quality of life" OR "glycaemic control" OR “glycemic

control” OR Glycosylated hemoglobin* OR hemoglobin A* ) AND AB ( intervention* OR program* OR strateg*

OR project* OR action* OR function* OR care* OR preparation OR education OR instruction* OR train* ).

Filters: Boleano, from 2009-2021

974

TI ( adolescen* OR teen* OR youth* OR young* ) AND TI (diabetes OR "diabetes mellitus, type 1" OR T1DM OR

"diabetes mellitus type 1" OR "DM1" OR "type 1 diabetes" ) AND TI ( manage* OR "self management" OR "self

care" OR “self-efficacy” OR “health and life quality” OR " quality of life" OR "glycaemic control" OR “glycemic

control” OR Glycosylated hemoglobin* OR hemoglobin A* ) AND AB ( intervention* OR program* OR strateg*

OR project* OR action* OR function* OR care* OR preparation OR education OR instruction* OR train* )

1,280

TI (adolescen* OR teen* OR youth* OR young*) AND TI (diabetes OR "diabetes mellitus, type 1" OR T1DM OR

"diabetes mellitus type 1" OR "DM1" OR "type 1 diabetes") AND TI (manage* OR "self management" OR "self

care" OR “self-efficacy” OR “health and life quality” OR " quality of life" OR "glycaemic control" OR “glycemic

control” OR Glycosylated hemoglobin* OR hemoglobin A*)

2,245

TI (adolescen* OR teen* OR youth* OR young*) AND TI (diabetes OR "diabetes mellitus, type 1" OR T1DM OR

"diabetes mellitus type 1" OR "DM1" OR "type 1 diabetes")

15,567

TI adolescen* OR teen* OR youth* OR young*

640,993

Pubmed

adolescent [MeSH Terms] AND diabetes mellitus, type 1 [MeSH Terms] AND ("self-management" [MeSH Terms]

OR self-care [MeSH Terms] OR quality of life [MeSH Terms] OR "glycated hemoglobin a" [MeSH Terms]) AND

(Program Evaluation [MeSH Terms] OR "health promotion" [MeSH Terms]).

Filters: English, from 2009-2021

Medline complete (via EBSCO)

adolescent [MeSH Terms] AND diabetes mellitus, type 1 [MeSH Terms] AND ("self-management" [MeSH Terms]

OR self-care [MeSH Terms] OR quality of life [MeSH Terms] OR "glycated hemoglobin a" [MeSH Terms]) AND

(Program Evaluation [MeSH Terms] OR "health promotion" [MeSH Terms]).

Filters: English, from 2009-2021

40 | Flora, M.

Review article

Study/Source of Evidence selection

Following the search, all identified records will be removed

as duplicates using the Mendeley. Two independent

reviewers will be screening titles and abstracts for

assessment against the inclusion criteria for the review.

Potentially relevant studies will be retrieved in total. Two

independent reviewers will assess the full-text citations

against the inclusion criteria. The scoping review will report,

in the full text, the reasons for the exclusion of sources of

evidence in full text that do not meet the inclusion criteria.

Any disagreements between the reviewers will be discussed

with a third reviewer. The search results and the study

inclusion process will be reported in full in the final scoping

review and presented in a Preferred Reporting Items for

Systematic Reviews and Meta-analyses extension for

scoping review (PRISMA-ScR) flow diagram.20

Data Extraction

Quantitative and qualitative data will be extracted from

articles included in the review by two independent reviewers

using a data extraction tool developed by the reviewers as

indicated by the methodology for scoping reviews proposed

by JBI.22The data extracted will include specific details about

the participants, concept, context, study methods, and

critical findings relevant to the review questions. A draft

extraction form is provided (Table 2). The draft data

extraction tool will be modified and revised as necessary

while extracting data from each included evidence source.

We will detail all modifications in the scoping review. Will

resolve any disagreements between the reviewers through

discussion or with an additional reviewer/s. If appropriate,

we will contact the authors of papers to request missing or

additional data, where required.

Table 2 - Data Extraction Instrument

Main Field

Extraction Categories

Category Description

Study ID

Reference number; Authors; Year; Title; Journal; Issue no; Vol

no.

Type of reference

1. Primary research

2. Systematic review

Inclusion/

Exclusion criteria

P – Adolescents with T1D

C - Programs and/or interventions to promote self-management

in adolescents with T1D. Excludes programs do not should

results.

C - Interventions via virtual or attendance in health care setting

(hospital or ambulatory), diabetic camps or at person’s home.

1. Yes

2. No

Characteristics of

population

Who are the participants involved in the intervention?

Who are the healthcare professionals in the healthcare

practice/intervention?

1. Adolescents

2. Adolescents and parents/

family

1. Physicians

2. Nurses

3. Psychologists

4. Physiotherapists

5. Nutritionists

6. Multidisciplinary

7. Other, please specify

Characteristics of

interventions How is the intervention designed?

General characteristics of interventions

1. Educational

2. Psychosocial

3. Supportive

4. Communicational

5. Other, please specify

1. Contents

2. In group

3. Individually

4. Duration of the sessions

Characteristics of

context

What is the setting of intervention delivery?

6. Health care setting

(Hospital or ambulatory)

7. Person’s home

8. Virtual

9. Other, please specify

Outcomes

What are the indicators of change in self-management skills after

the intervention?

1. Self-management

cute and chronic

complications of the disease:

Pensar Enfermagem / v.27 n.01 / june 2023 | 41

DOI: 10.56732/pensarenf.v27i1.215

Review article

hypo and hyperglycemia, insulin

administration, measurement of

blood

glucose, health

maintenance: diet, and physical

exercise)

2. Self-efficacy

3. Knowledge

4. Quality of life

5. Self-care

6. Glycated Hemoglobin

Results

Data analysis and presentation

The results will be summarized and presented in a tabular

form. A draft results table has been developed to address

each question (table 3). A narrative summary accompanies

the tabular results and describes how these are related to the

review's objective and questions. We will present what is

known, the literature gaps in the field, and the potential

implications for health care and research.

Table 3 - Tabular Summary for Results Presentation

Review questions

Study 1

Study 2

Study 3

...

a) What are the characteristics of the interventions that promote self-management

in adolescents with T1D?

b) Who are the professionals responsible for implementing the interventions?

c) What are the indicators of change in self-management skills after the

intervention?

Discussion

Mapping of the available interventions implemented for

adolescents with T1D may constitute a tool to design of a

structured intervention to promote self-management

behaviour in adolescents with T1D and contribute to the

dissemination of available evidence on the topic. This

scoping review will only consider English, Portuguese, and

Spanish studies, which can be registered as potential study

limitation. In order to minimize the effects of this limitation,

if we find an article relevant to the topic, in another

language, we undertake to use tools so that can be integrated

in this review.

Conclusions

The literature points to the development of interventions in

different contexts for adolescents with T1D focused on self-

management and empowerment to promote autonomy to

promote better quality of life and reduce complications. The

scoping review, which will result from this protocol is

expected to gather relevant information that will serve as a

basis for the development of a nursing intervention for

adolescents with T1D.

References

1. International Diabetes Federation. IDF: Diabetes ATLAS

[Internet]. 9th ed. Belgium:International Diabetes

Federation; 2019. Available from:

https://www.diabetesatlas.org

2. Serlachius AS, Scratch SE, Northam EA, Frydenberg E,

Lee KJ, Cameron FJ. A randomized controlled trial of

cognitive behaviour therapy to improve glycaemic control

and psychosocial wellbeing in adolescents with type 1

diabetes. J Health Psychol [Internet]. 2016 Jun

10;21(6):1157–69. Available from:

http://journals.sagepub.com/doi/10.1177/135910531454

7940

3. Patton SR, Maahs D, Prahalad P, Clements MA.

Psychosocial needs for newly diagnosed youth with Type 1

Diabetes and their families. Curr Diab Rep [Internet]. 2022

Aug 21;22(8):385–92. Available from:

https://link.springer.com/10.1007/s11892-022-01479-8

4. Cameron FJ, Garvey K, Hood KK, Acerini CL, Codner

E. ISPAD Clinical practice consensus guidelines 2018:

Diabetes in adolescence. Pediatr Diabetes [Internet]. 2018

Oct;19(Suppl. 27):250–61. Available from:

https://onlinelibrary.wiley.com/doi/10.1111/pedi.12702

5. Mayer-Davis EJ, Kahkoska AR, Jefferies C, Dabelea D,

Balde N, Gong CX, et al. ISPAD Clinical Practice

Consensus Guidelines 2018: Definition, epidemiology, and

classification of diabetes in children and adolescents. Pediatr

Diabetes [Internet]. 2018 Oct;19(Suppl.27):7–19. Available

from:

https://onlinelibrary.wiley.com/doi/10.1111/pedi.12773

6. Smart CE, Annan F, Higgins LA, Jelleryd E, Lopez M,

Acerini CL. ISPAD Clinical Practice Consensus Guidelines

2018: Nutritional management in children and adolescents

with diabetes. Pediatr Diabetes [Internet]. 2018

42 | Flora, M.

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Oct;19(Suppl.27):136–54. Available from:

https://onlinelibrary.wiley.com/doi/10.1111/pedi.12738

7. DiMeglio LA, Acerini CL, Codner E, Craig ME, Hofer

SE, Pillay K, et al. ISPAD Clinical Practice Consensus

Guidelines 2018: Glycemic control targets and glucose

monitoring for children, adolescents, and young adults with

diabetes. Pediatr Diabetes [Internet]. 2018 Oct;19(Suppl.

27):105–14. Available from:

https://onlinelibrary.wiley.com/doi/10.1111/pedi.12737

8. Serlachius A, Northam E, Frydenberg E, Cameron F.

Adapting a generic coping skills programme for adolescents

with Type 1 Diabetes: A qualitative study. J Health Psychol

[Internet]. 2012 Apr 28;17(3):313–23. Available from:

http://journals.sagepub.com/doi/10.1177/135910531141

5559

9. Ryan P, Sawin KJ. The individual and family self-

management theory: Background and perspectives on

context, process, and outcomes. Nurs Outlook [Internet].

2009 Jul;57(4):217-225.e6. Available from:

https://linkinghub.elsevier.com/retrieve/pii/S0029655408

002923

10. National Collaborating Centre for Women’s and

Children’s Health. Diabetes (Type 1 and Type 2) in children

and young people: Diagnosis and management. [Internet].

2015 [cited 2022 Oct 16];107–67. Available from:

https://pubmed.ncbi.nlm.nih.gov/26334077/

11. Phelan H, Lange K, Cengiz E, Gallego P, Majaliwa E,

Pelicand J, et al. ISPAD Clinical Practice Consensus

Guidelines 2018: Diabetes education in children and

adolescents. Pediatr Diabetes [Internet]. 2018

Oct;19(Supppl. 27):75–83. Available from:

https://onlinelibrary.wiley.com/doi/10.1111/pedi.12762

12. Ory MG, Smith ML, Patton K, Lorig K, Zenker W,

Whitelaw N. Self-management at the tipping point:

Reaching 100,000 americans with evidence-based programs.

J Am Geriatr Soc [Internet]. 2013 May;61(5):821–3.

Available from:

https://onlinelibrary.wiley.com/doi/10.1111/jgs.12239

13. Bjornstad P, Donaghue KC, Maahs DM. Macrovascular

disease and risk factors in youth with type 1 diabetes: time

to be more attentive to treatment? Lancet Diabetes

Endocrinol [Internet]. 2018 Oct;6(10):809–20. Available

from:

https://linkinghub.elsevier.com/retrieve/pii/S2213858718

300354

14. Barrett EJ, Liu Z, Khamaisi M, King GL, Klein R, Klein

BEK, et al. Diabetic microvascular disease: An Endocrine

Society Scientific Statement. J Clin Endocrinol Metab

[Internet]. 2017 Dec 1;102(12):4343–410. Available from:

http://academic.oup.com/jcem/article/102/12/4343/460

4942

15. Barlow J, Wright C, Sheasby J, Turner A, Hainsworth J.

Self-management approaches for people with chronic

conditions: A review. Patient Educ Couns [Internet]. 2002

Oct;48(2):177–87. Available from:

https://linkinghub.elsevier.com/retrieve/pii/S0738399102

00032

16. Lorig KR, Holman HR. Self-management education:

History, definition, outcomes, and mechanisms. Ann Behav

Med. [Internet]. 2003 Aug; 26(1):1-7. Available from:

https://doi.org/10.1207/S15324796ABM2601_01

17. Flora M, Gameiro M. Self-care of adolescents with Type

1 Diabetes Mellitus: Knowledge about the disease. Rev

Enferm Ref [Internet]. 2016 Mar 29;IV Série(8):17–26.

Available from:

http://rr.esenfc.pt/rr/index.php?module=rr&target=publi

cationDetails&pesquisa=&id_artigo=2565&id_revista=24

&id_edicao=90

18. Hessler DM, Fisher L, Bowyer V, Dickinson LM,

Jortberg BT, Kwan B, et al. Self-management support for

chronic disease in primary care: frequency of patient self-

management problems and patient reported priorities, and

alignment with ultimate behavior goal selection. BMC Fam

Pract [Internet]. 2019 Dec 29;20(1):120. Available from:

https://bmcfampract.biomedcentral.com/articles/10.1186

/s12875-019-1012-x

19. Colson S, Côté J, Gentile S, Hamel V, Sapuppo C,

Ramirez-Garcia P, et al. An integrative review of the quality

and outcomes of diabetes education programs for children

and adolescents. Diabetes Educ [Internet]. 2016 Oct

19;42(5):549–84. Available from:

http://journals.sagepub.com/doi/10.1177/014572171665

8976

20. Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun

H, Levac D, et al. PRISMA extension for scoping reviews

(PRISMA-ScR): checklist and explanation. Ann Intern Med

[Internet]. 2018 Oct 2;169(7):467–73. Available from:

https://www.acpjournals.org/doi/10.7326/M18-0850

21. Peters M, Godfrey C, McInerney P, Munn Z, Trico A,

Khalil H. Scoping Reviews. In: JBI Manual for Evidence

Synthesis [Internet]. JBI; 2020. Available from:

https://wiki.jbi.global/display/MANUAL/Chapter+11%3

A+Scoping+reviews

22. Peters MDJ, Marnie C, Tricco AC, Pollock D, Munn Z,

Alexander L, et al. Updated methodological guidance for the

conduct of scoping reviews. JBI Evid Synth [Internet]. 2020

Oct;18(10):2119–26. Available from:

https://journals.lww.com/10.11124/JBIES-20-00167

| 43

Pensar Enfermagem / v.27 n.01 / july 2023

DOI:10.56732/pensarenf.v27i1.259

Review article

Como citar este artigo: Oliveira R, Ramos O, Capelo J, Chamusca D. Fear of falling in the elderly in a

hospital setting: scoping review protocol.

Pensar Enf [Internet]. 2023 Jul; 27(1):43-49

. Available from:

https://doi.o

rg/10.56732/pensarenf.v27i1.259

Fear of falling in the elderly in a hospital setting:

scoping review protocol

Abstract

Introduction

The expected changes in an aging process contribute to the increased risk of falling and

influence the person's own assessment of their risk of falling. In addition to physical injuries,

falls can have psychological consequences, such as fear of falling. This concept was defined

as a continuous concern of an individual, when standing or walking, with the occurrence of

falls, compromising the performance of daily activities. In this sense, the fear of falling is a

sensitive human response to nursing care. As health professionals, nurses should consider

evaluating the fear of falling and understand how this phenomenon manifests itself in the

elderly.

Objective

Mapping the available scientific evidence related to the fear of falling in the elderly in a

hospital environment.

Inclusion criteria

Quantitative, qualitative, or mixed studies will be considered, as well as systematic reviews

and grey literature. The review will include studies on the fear of falling in elderly people

who are in hospitals.

Methods

Scoping review protocol according to the Joanna Briggs Institute method. Three-phase

research strategy that will aim to locate published and unpublished studies in Portuguese,

English and Spanish. Temporal, geographic, or cultural limits will not be considered in the

research. The search strategy will be adapted to each database/repository in order to identify

relevant studies. The selection of studies will begin by analysing the title and abstract. The

full text of the selected studies will be analysed by two independent reviewers who will

extract data using a specific instrument.

The protocol was registered on the Open Science Framework platform (DOI -

https://doi.org/10.17605/OSF.IO/B5V6K).

Keywords

Fear of Falling; Elderly; Hospital; Review.

Rita Oliveira1

orcid.org/0000-0003-3014-2598

Olga Ramos2

orcid.org/0000-0002-0039-2433

Joana Capelo3

orcid.org/0000-0001-9181-3960

Daniela Chamusca4

orcid.org/0000-0002-5390-2193

1 Master. Institute of Health Sciences - Universidade

Católica Portuguesa, Porto, Portugal. Unidade Local de

Saúde de Matosinhos - Hospital Pedro Hispano,

Matosinhos, Portugal.

2 Master. Institute of Health Sciences - Universidade

Católica Portuguesa, Porto, Portugal. Unidade Local de

Saúde de Matosinhos - Hospital Pedro Hispano,

Matosinhos, Portugal.

3 Master. Centro Hospitalar Universitário de São João,

Porto, Portugal.

4 Master. Centro Hospitalar Universitário de São João,

Porto, Portugal.

Corresponding author

Ana Rita Capela Oliveira

E-mail: ritaoliveira2323@gmail.com

Received: 13.02.2023

Accepted: 17.04.2023

44 | Oliveira, A.

Review article

Introduction

According to the World Health Organization 1, by 2030, it

is estimated that the number of people over 60 years of age

will increase by 34%, from 1 billion in 2019 to 1.4 billion.

By 2050, this population will have doubled to 2.1 billion

worldwide.

In Portugal, demographic aging continues to increase

significantly. According to the 2021 Census2, the population

aging index, an indicator that compares the population aged

65 or over with the population aged 0 to 14, is 182, which

means that there are 182 elderly people for every 100 young

people.

With advancing age, it is expected that there will be changes

typical of the aging process. At the biological level, a variety

of molecular and cellular damage occurs, leading to a gradual

loss in physiological reserves and a functional decline in the

person's intrinsic capacity.3 Muscle weakness, compromised

balance, difficulties in locomotion and worsening of

cognition are some of the changes that occur in aging, and

these contribute to the increased risk of falls in elderly

people.4, 5

A fall can be defined as an unintentional event that results

in the change of position of the individual to a lower

postural level in relation to his/her initial position.6 The

International Council of Nurses (ICN) 7 in addition to

considering that a fall is an “event or episode”, adds that

falling is “a descent from a body from a higher level to a

lower level due to imbalance, fainting or inability to support

weight and stay upright”.

In the elderly, falls are frequent events with possible serious

consequences for the individual and with a significant

economic impact on health institutions. Globally, the

prevalence of falls in elderly people is 26.5%8, with one third

of this population falling at least once a year6, which

contributes to falls being considered the second leading

cause of injuries in the elderly.9

There are several risk factors that contribute to the

occurrence of falls, *and it is consensual to use the

classification of intrinsic and extrinsic factors.

Intrinsic factors are conditions that are related to the client,

such as age, comorbidity, history of previous falls, gait,

visual and auditory impairment, musculoskeletal changes,

and cognitive impairment.10

The extrinsic factors are related to the environment where

the client is inserted. At the hospital level, we highlight acute

illness, delirium, postoperative period, medication, change

of environment, support equipment, bed rest and

immobility, use of inappropriate footwear, lighting of

spaces, lack of knowledge about fall prevention, failure to

communicate between the client and the health

professional.6, 10 In this way, it is noticeable that the hospital

environment is a context where elderly people can present

an extremely high risk of falling.

With regard to the consequences of falls, in addition to

physical injuries, such as fractures and traumatic brain

injuries, it is important to analyse the psychological

consequences, which are harmful for the elderly in the long

term and contribute to a decrease in quality of life. Loss of

confidence and fear of falling are two examples of

psychological consequences and can result in compromised

activity levels, leading to reduced physical function and

social interactions.11

The ICN 7 defines fear as a “negative emotion: feeling

threatened, endangered or upset due to known or unknown

causes, sometimes accompanied by a physiological response

of the fight-or-flight type”.

The fear of falling has been recognized by the scientific

community, since the 1980s, as a health problem in the

elderly. This concept was called ptophobia, in 1982, and is

understood as the phobic reaction to keep standing and

walking, even when there is no neurological or orthopaedic

alteration.12

Subsequently, the fear of falling was defined as a continuous

concern of an individual, when standing or walking, with the

occurrence of falls, compromising the performance of daily

activities.13

Currently, fear of falling can be considered a protective or

pathological condition. On the one hand, fear as a protective

factor will lead the elderly to avoid risky behaviour and seek

to promote safety, either through measures that prevent falls

or through gait adaptations that increase stability. On the

other hand, the pathological fear of falling can lead to a

decline in quality of life and increase the risk of falls by

reducing the activities necessary to maintain self-esteem,

confidence, strength, and balance.5, 14

The fear of falling can cause a loss of confidence in the

ability to perform everyday tasks, leading the elderly to

restrict their daily activities15, social isolation, decline in

physical capacity and loss of independence16, which can

result in changes in mental health, namely the emergence of

depressive and anxious states.17–19 Other psychological

aspects, such as self-efficacy related to falls and self-

perception of health status, are associated with fear of

falling.16

The fear of falling proves to be a risk factor for falls in

elderly people, whether or not they have a history of

previous falls.20 People who are afraid of falling tend not to

be confident in their ability to prevent or avoid falls, which

increases the risk of falling and requires psychotherapeutic

and physical rehabilitation intervention.21

The estimated prevalence of elderly people with fear of

falling is around 36%, which is more evident in people who

have fallen in the last three months.22 In a hospital

environment, the fear of falling in elderly people who are

hospitalized varies between 36 and 83% .17, 23

It is also known that in hospitalized elderly people, the fear

of falling may have a greater influence on functional

recovery than the presence of pain or emotional changes.

Fear of falling also reduces the participation of individuals

in exercises during the rehabilitation process, as they have

functional limitations and reluctance to move.17, 24

The International Classification of Nursing Diagnoses by

NANDA International, Inc. (NANDA-I) 25 presents the

diagnosis “Risk of falls in adults” which is defined as the

“adult susceptibility to experience an event that results in

inadvertent displacement to the ground, floor or other lower

level that may compromise health”.25(p468) Still in this

Pensar Enfermagem / v.27 n.01 / july 2023 | 45

DOI:10.56732/pensarenf.v27i1.259

Review article

diagnosis it is possible to verify that the fear of falling

appears in the risk factors, namely in the

“psychoneurological factors”.25

In this sense, it is noticeable that the fear of falling is a

sensitive human response to nursing care. As health

professionals, nurses should consider evaluating the fear of

falling and understand how this phenomenon manifests

itself in the elderly.

Considering this issue, a preliminary scoping review was

carried out in the following databases/sources: Open

Science Framework (OSF), Medical Literature Analysis and

Retrieval System Online (MEDLINE) (via PubMed) and

Cumulative Index to Nursing and Allied Health Literature

(CINAHL) (via EBSCO). A scoping review18 was found

that mapped the evidence about fear of falling in elderly

people living in the community. In addition, the review

concentrated on the results of articles published between

2015 and 2020 and the search was carried out only in a

database.

In this way, this review differs from the scoping review

mentioned above in that it intends to address the fear of

falling of elderly people who are hospitalized. Knowledge

on this topic lacks completeness and a scoping review will

facilitate the necessary mapping of this knowledge.

In addition to a scoping review allowing to map the available

evidence about a phenomenon, it also allows the

identification of the main characteristics or factors related

to a concept, including those that are related to

methodological research.26

The objective of this scoping review is to map the available

scientific evidence regarding the fear of falling in the elderly

in a hospital setting.

Review Question

Following the recommendations of the Joanna Briggs

Institute (JBI) 27 for the preparation of a scoping review, the

review question is designed using the PCC mnemonic for

scoping review, where P stands for “participants”, C for

“concept” and C for "context".

For this review, it was defined as Participants – people aged

65 or over, Concept – fear of falling and Context – hospital

environment, which leads us to the following review

question:

What is the published evidence on the fear of falling in the

elderly in a hospital environment?

From the defined review question, this scoping review may

also answer the following questions:

-What is the published evidence on the related/etiological

factors inherent to the fear of falling in the elderly?

-What is the published evidence on the clinical

indicators/defining characteristics of fear of falling in the

elderly?

-What are the instruments that assess the fear of falling in

the elderly in a hospital environment?

Inclusion Criteria

Based on the PCC mnemonic, we defined the inclusion

criteria regarding participants, concept, and context

Participants

Regarding Participants, the review will consider all studies

that include elderly people as participants. Gender, ethnicity,

or other personal characteristics will not be considered. An

elderly person is understood to be one who is 65 years of

age or older.28

Concept

As for the Concept, the review will consider studies that

explore the fear of falling. Fear of falling is understood as a

continuous concern of an individual, when standing or

walking, with the occurrence of falls, compromising the

performance of daily activities.13

Context

Regarding the Context, the review will consider all studies

carried out in a hospital context, regardless of the type of

establishment, whether public or private, general, or

specialized, urban, or rural, teaching or not, and certified or

not.

Types of sources

This scoping review will include studies with quantitative,

qualitative, or mixed methods designs.

Quantitative studies include any experimental study

(including randomized controlled trials, non-randomized

controlled trials, or other quasi-experimental studies,

including before and after studies) and observational studies

(descriptive studies, cohort studies, cross-sectional studies,

case studies, and follow-up studies, series of cases).

Qualitative studies include studies with qualitative data

analysis, but are not limited to phenomenological studies,

grounded theory, ethnography, qualitative description, and

action research.

Systematic reviews that meet the inclusion criteria will also

be considered, depending on the research question. Finally,

the grey literature, namely theses and dissertations, will also

be included in the research.

Methods

The scoping review will be conducted in accordance with

the methodology proposed by the JBI for scoping review.27

This scoping review protocol is registered on the OSF

platform (DOI -

https://doi.org/10.17605/OSF.IO/B5V6K).

Search strategy

The search strategy will aim to locate published and

unpublished studies in Portuguese, English and Spanish.

Temporal, geographic, or cultural limits will not be

considered in the research.

46 | Oliveira, A.

Review article

JBI 27, 29 recommends a three-phase research process that

should be used in developing a comprehensive research

strategy:

The first phase involved conducting a limited initial search

of the MEDLINE (via PubMed) and CINAHL (via

EBSCO) databases to find articles on the phenomenon of

interest, using the search terms: “fear of falling”; “aged”;

"hospital*". In relevant articles, the words contained in the

titles and abstracts were analysed, as well as the indexing

terms used to describe the articles, in order to develop a

complete search strategy for CINAHL complete (via

EBSCO), Web of Science Core Collection, MEDLINE (via

PubMed), Scopus.

Search strategies will be adapted and individualized for each

database of published studies, as each uses its own

controlled vocabulary. Chart 1 presents a research strategy

proposal in one of the databases.

Chart 1 – Search strategy used in the database - MEDLINE (via PubMed)

Data base

Research Strategy

Results

MEDLINE (via

PubMed)

#1: "fear of falling"[All Fields]

#2: "aged"[MeSH Terms] OR "aged"[Title/Abstract]

#3: "elder*"[Title/Abstract]

#4: “older”[Title/Abstract]

#5: "senior*"[Title/Abstract]

#6: "older adult*"[Title/Abstract]

#7: "older people"[Title/Abstract]

#8: "geriatric*"[Title/Abstract]

#9: "older person*"[Title/Abstract]

#10: #2 OR #3 OR #4 OR #5 OR #6 OR #7 OR #8 OR #9

#11: "hospital setting"[Title/Abstract]

#12: "inpatient*"[MeSH Terms] OR "inpatient*"[Title/Abstract]

#13: “hospital*"[MeSH Terms] OR "hospital*"[Title/Abstract]

#14: "ward*"[Title/Abstract]

#15: #11 OR #12 OR #13 OR #14

#16: #1 AND #10 AND #15

#17: #16 AND (English[Filter] OR Portuguese[Filter] OR Spanish[Filter])

2,279

3,898,782

302,509

535,444

49,998

113,680

38,820

75,485

13,565

4,221,852

13,929

157,237

1,991,749

71,416

2,066,169

262

246

Sources of unpublished studies, namely grey literature,

include OpenGrey, RCAAP (Portuguese Open Access

Scientific Repository) and Coordination for the

Improvement of Higher Education Personnel Theses Bank

(CAPES) (Brazil). The search in this grey literature was

carried out with the term “fear of falling”.

The second phase involves performing database-specific

searches on each of the bibliographic databases and

information sources selected and reported in the protocol.

The third phase involves the inclusion of any relevant

additional studies in the reference lists of all studies selected

for the review.

Selection of studies

All identified bibliographic references will be grouped and

managed in the Rayyan Intelligent Systematic Review

software, (Cambridge/United States of America,

Doha/Qatar), and duplicates will be removed.

After the search, the selection of relevant results will begin

with the analysis of titles and abstracts by two independent

reviewers, based on the inclusion criteria for the review

previously described.

Subsequently, the full text of the selected studies will be

evaluated in detail based on the inclusion criteria by two

independent reviewers. After analysing the full text, studies

that do not meet the inclusion criteria will be excluded. The

reasons for excluding these studies will be described in one

of the appendices of the scoping review.

Any disagreements that arise between the reviewers will be

resolved through discussion and consensus or by resorting

to a third reviewer.

The evaluation of the methodological quality of the included

studies will not be carried out because it is a scoping

review.29

Pensar Enfermagem / v.27 n.01 / july 2023 | 47

DOI:10.56732/pensarenf.v27i1.259

Review article

The research process will be exposed in full in narrative

form and presented in schematic form through a flow

diagram known as Preferred Reporting Items for Systematic

Reviews and Meta-Analyses (PRISMA), using the extension

for scoping reviews called Preferred Reporting Items for

Systematic Reviews and Meta-Analyses extension for

Scoping Reviews (PRISMA-ScR).30 This diagram

demonstrates, in detail, how the search was carried out, the

selection of results used in accordance with the inclusion

criteria and the elimination of duplicates.27

Data extraction

Data extraction from the included articles will be carried out

by two independent reviewers, with the support of a third

reviewer to resolve any divergence.

An instrument will be used that considers specific details

about the population, concept, context, and research

methods relevant to the issue and stated objective of this

scoping review, as indicated by the methodology developed

by the JBI (Chart 2).

Chart 2 – Data extraction instrument

Scoping Review details

Review title:

Fear of falling in the elderly in a hospital setting: a scoping review

Purpose of the review:

Mapping the available scientific evidence related to the fear of falling in the elderly in

a hospital environment.

Review question:

What is the published evidence on the fear of falling in the elderly in a hospital

environment?

Inclusion criteria

Participants

Studies that include elderly people aged 65 or over as participants.

Concept

Studies that explore the fear of falling.

Context

Studies carried out in a hospital environment, specifically hospitals, regardless of the

type of establishment, whether public or private, general, or specialized, urban, or

rural, teaching or not, and certified or not.

Font types

Quantitative, qualitative, or mixed studies. Systematic reviews and grey literature.

Details and Characteristics of the Studies

Article title

Magazine (volume, edition, pages)

Publication year

Author(s)

Country

Context

Participants

Methodology used for data collection and analysis

Results found

Fear of falling in the elderly person in a hospital environment

Related/etiological factors inherent to the fear of falling in the

elderly

Clinical indicators/Defining characteristics of fear of falling in the

elderly

Instruments that assess the fear of falling in the elderly in a hospital

context

Research Recommendations/Suggestions

Relevant bibliographical references

In order for researchers to become familiar with the data

extraction instrument, a pilot test will be carried out with the

first five articles. If necessary, the data extraction instrument

may undergo relevant changes, according to the conclusions

of the pilot test and the emerging needs of the analysis of

eligible articles.

Data Analysis and Presentation

The organization and synthesis of the collected information

will be carried out using tables and charts that facilitate the

reader's interpretation. In this way, the collected data will be

presented in schematic form through a table and

accompanied by descriptive summary tables of the articles

included in the scoping review. The conclusions of the selected

studies will be described through a narrative summary.

48 | Oliveira, A.

Review article

Subsequently, the results found will be categorized

according to their similarity, in line with the objective and

review questions that were proposed in this protocol.

In short, the presentation of the data will allow identifying,

characterizing, and synthesizing the knowledge about the

fear of falling in the elderly in a hospital setting.

Authors’ contributions

RO: Study conception and design; Data collection; Data

analysis and interpretation; Manuscript writing.

OR: Analysis and interpretation of data; Drafting of the

manuscript.

JC: Critical revision of the manuscript.

DC: Critical revision of the manuscript.

Conflicts of interests

No conflict of interest declared by the authors.

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JL, Guandalini LS, et al. Medo de cair e o risco de queda:

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23. Dadgari A, Hojati H, Mirrezaie SM. The relationship

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24. Visschedijk J, Achterberg W, Van Balen R, Hertogh C.

Fear of falling after hip fracture: A systematic review of

measurement instruments, prevalence, interventions, and

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https://doi.org/10.1111/j.1532-5415.2010.03036.x

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P, Godfrey CM, et al. What are scoping reviews? Providing

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30. Tricco AC, Lillie E, Zarin W, O’Brien KK, Colquhoun

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| 50

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DOI: 10.56732/pensarenf.v27i1.214

Review article

How to cite this article: Tavares A, Olivença L, Vilas Boas M. Cuidados de enfermagem na prevenção de

quebras de pele no idoso: revisão integrativa da literatura.

Pensar Enf [Internet]. 2023 Jul; 27(1): 43-53

Available from:

https://doi.org/10.56732/pensarenf.v27i1.214

Nursing care in the prevention of skin tears in the

elderly: integrative review of the literature

Abstract

Introduction

Skin tears are considered injuries of traumatic etiology that can result from a variety of

mechanical forces, such as shear or friction forces, blunt trauma, falls, improper handling,

injury caused by equipment or removal of adherent dressings.

These are acute wounds that have a high probability of becoming complex chronic wounds.

They cause pain, increase healthcare costs, reduce quality of life and are a source of stress

for the person. They lengthen hospital stay and increase the risk of morbidities. Skin Tears

are a growing problem, making it crucial to invest in this topic in order to promote their

prevention and proper treatment.

Objective

To identify nursing care and strategies to prevent skin tears in the elderly.

Methods

A bibliographic survey of publications was carried out in the EBSCOhost search engine,

which incorporates the CINAHL Complete, MEDLINE Complete and Cochrane Database

of Systematic Reviews databases and in the PubMed database, carried out in June 2022. 26

records were returned, five meeting the inclusion criteria. The included studies (n=5) were

carried out between 2012 and 2022.

Results

In the sample of articles, it was possible to identify the benefits of twice-daily application of

topical products, moisturizing creams and emollients, and the relevance of oral

administration for 8 weeks of an oral nutritional supplement in the hydration of the stratum

corneum and in the elasticity of the skin, as well as the importance of primary prevention

and the promotion of health education in elderly skin care.

Conclusion

Preventive care to avoid skin tears in the elderly focuses on the daily topical application of

moisturizing creams and emollients, nutrition (administration of oral nutritional

supplements with 10g of collagen peptides) and adequate hydration; to prevent cutaneous

traumas by providing a safe environment with adequate devices, and through the promotion

of health education.

Keywords

Skin Tears; Prevention; Effectivity; Elderly; Health Care; Nursing Care.

Ana Carina Tavares1

orcid.org/0000-0003-4328-0957

Luísa Olivença2

orcid.org/0000-0002-8762-9148

Marisa Vilas Boas3

orcid.org/0000-0001-6690-0018

1 ACES Amadora / UCC Amadora+, Amadora,

Portugal.

2 Hospital das Forças Armadas Pólo de Lisboa /

Serviço Medicina Subaquática e Hiperbárica, Lisboa,

Portugal; Diaverun Portugal, Sintra, Portugal.

3 Hospital das Forças Armadas Pólo de Lisboa /

Departamento Cirúrgico Ala A, Lisboa, Portugal

Autor de correspondência

Ana Carina Tavares

E-mail: anacarinatavares@gmail.com

Recebido: 17.11.2022

Aceite: 03.05.2023

Pensar Enfermagem / v.27 n.01 / july 2023 | 51

DOI: 10.56732/pensarenf.v27i1.214

Review article

Introduction

Ageing is characterized by natural, dynamic and progressive

decline in which morphological, physiological, biochemical

and psychological modifications occur, thus increasing the

vulnerability of the elderly and causing a greater occurrence

of pathological processes.

With advancing age, according to Papaléo,6 the skin tends to

become thinner and more flaccid. There is a decrease in the

thickness of the epidermis-dermis, in the size of the

keratinocytes, in cell proliferation in the stratum basale and

in structural and architectural alterations of the elastic fibers

that make the collagen system vulnerable to mechanical

forces. There is also a strong compromise of the collagen

metabolism, and consequently, the skin becomes less elastic

and thinner.

For Oriá et al.,7 the barrier function of the skin is also

affected. There is a decrease in the hydration of the stratum

corneum, a compromise of the sebaceous and sweat glands

and a decrease in the vascular bed along with the fragility of

the blood vessels. According to LeBlanc et al., 8 these

physiological changes that occur with ageing lead to an

increase in the occurrence of skin tears and, consequently,

to the compromise of the human body's homeostasis.

Skin tears are considered injuries of traumatic etiology that

can result from a variety of mechanical forces, such as shear

or friction forces, blunt trauma, falls, improper handling,

injury caused by equipment or removal of adherent

dressings. These may occur in any anatomical region, but are

more frequent in the extremities, particularly in the upper

limbs, where they occur 70 to 80% in the hands and

forearms.5,9,10

Skin tears are a problem with some prevalence in the elderly

and with a negative impact both on their quality of life and

on the increase in costs for the person and the health system.

It is therefore essential to address this subject and analyze

the scientific evidence, in national and international studies,

about nursing care in prevention for the elderly.

Considering the different professional contexts of the

reviewers, it was consensual that skin tears are increasingly

prevalent and transversal to distinct services, raising the

need to deepen the knowledge and improve the quality of

the nursing care provided, in order to prevent possible

complications.

The starting question for this study was: "What are the

nursing care practices in the prevention of skin tears in the

elderly?", where the general objective is to assess the state of

the art regarding the prevention of skin tears in the elderly.

As a specific objective we aim to identify nursing care

practices and strategies in the prevention of skin tears in the

elderly. This integrative review is divided into four parts: the

methodology, where a description of the research

elaboration method and a presentation of the flowchart of

the article selection process are carried out; the sample

results organized by the name of the article, year, objective,

sample, type of study, methodology and the main

conclusions; the discussion of the main results of the review

and the limitations of the study; the conclusion, which

includes the general interpretation of the results, their

relevance for clinical practice, implications for future

research and the strengths and limitations of the review.

Methods

According to Soares et al.11 a integrative literature review is

developed with the purpose of gathering and synthesizing

results from studies carried out using different

methodologies to deepen the knowledge on the chosen

subject.

Based on the starting question: "What are the nursing care

practices in the prevention of skin tears in the elderly?", a

search was conducted in the EBSCOhost search engine

integrating the CINAHL Complete, MEDLINE Complete

and Cochrane Database of Systematic Reviews databases

and in PubMed, to identify the articles on the subject, using

natural language words and terms indexed by the PEO

elements described, applying the Boolean operators "OR"

and "AND" and the use of truncations (see Table 1).

52 | Tavares, A.

Review article

Table 1- OR and AND combination across the key concepts identified for the research strategy

P - Population AND E - Exposure AND O - Outcomes

Elderly over 65 years old Skin Tears Prevention Nursing Care

Elderly

"old man"

"aged"

"frail elderly"

"Old people"

"65 over"

"older people"

Prevent*

Effectiv*

'Skin tears"

"skin laceration"

"nursing care"

'nursing strategies"

"nursing tasks"

nursing procedures"

'nursing guidelines"

"nursing involvement"

"nursing activities"

"Nurses's Role"

'Nursing"

"nursing interventions"

"nursing instructions"

'nursing recommendations"

"Health care"

All articles addressing the research question were

considered, in full text available for free online in the

databases used, published between 2012 and 2022, written

in Portuguese, English and Spanish, as these were the

languages mastered by the reviewers.

The age range was defined as the research inclusion

criterion: the elderly (over 65 years old) and without social

context, that is, people in an outpatient basis or admitted to

hospitals, day centers, convalescent units or other health

institutions were included.

From this search conducted in the aforementioned

databases in June 2022, the sum of twenty-six articles was

obtained, among which one was duplicate, twelve were

excluded by reading the title, five rejected by reading the

abstract and three eliminated by reading the full text. The

final result was the inclusion of five articles for review, after

their full reading, as explained in figure 1.

AND

Pensar Enfermagem / v.27 n.01 / july 2023 | 53

DOI: 10.56732/pensarenf.v27i1.214

Review article

Figure 1 - Flowchart of the article selection process after applying the inclusion criteria.

54 | Tavares, A.

Review article

The search steps on the retrieved articles were carried out

independently by the three reviewers, to assess compliance

with the eligibility criteria for the present review. After this

first selection, the full texts (of potentially relevant evidence)

were extracted and assessed thoroughly in order to detect

any deviations from the inclusion criteria.

For an article to progress to the full reading stage, it was

necessary for at least two of the three reviewers to consider

it eligible.

Results

The sample results are presented in the table below,

organized by article name, year, objective, sample, type of

study, methodology and the main conclusions regarding the

final articles that were included in this integrative review.

Table 2 – Results of the final articles included in the integrative review

Article

name

Objective Sample

Type of

Study

Methodology Main conclusions

The effectiveness of a twice-daily skin-

moisturizing regimen for reducing the incidence of skin tears; Carville K,

et al, 2014 4

To assess

the

effectivenes

s of a

standardize

d twice-

daily

hydration

regimen in

preventing

skin tears in

hospitalized

patients in

health

facilities.

980

hospitalized

patients in 14

Western

Australian

health

facilities

Cluster randomized controlled clinical trial

Elderly care facilities were divided into 7

pairs, defined by number of beds and

provision of high or low clinical care. One

healthcare unit from each matched pair

was randomized to the intervention group

and the other to the control group.

In the intervention group, the elderly

received a twice-daily application of a

standardized pH-neutral, perfume-free

moisturizer on the extremities of the body,

applied in a gentle, downwards direction.

The elderly in the control healthcare units

did not receive any standardized skin

hydration regimen.

SPSS, version 19 application software was

used to analyze the data collected over the

course of 6 months.

Applying moisturizer twice-daily, reduced the

incidence of skin tears in almost 50% of the users

living in the health facilities.

The highest percentage of skin tears on the

extremities of the lower limbs was observed in the

facilities with low clinical care.

The most dependent elderly showed skin tears at arm

level.

The main contributing factor to skin tears in both

groups was age-related skin fragility.

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Skin tear prevention in elderly patients using twice-daily moisturizer; Finch K, et al, 2018 12

To test the

efficacy of a

twice-daily

application

moisturizer

to the

extremities

hospitalized

elderly

patients

over a 12-

month

period

(January to

December

2013).

Included 762

eligible

patients in

the

intervention

group and

415 users in

the historical

control group

(over 65 years

old)

Prospective intervention study

The prospective intervention study was

conducted and compared with the results

of historical controls (study conducted

from July to December 2011, involving 415

patients, with a duration of 6 months).

Patients were admitted to a Brisbane

private hospital (45 beds in the

rehabilitation ward and 30 in the

acute/subacute ward).

The following exclusion criteria were

applied: patients who did not sign the

consent form; those who had a day

admission to the rehabilitation ward; those

deemed unsuitable by medical officer; and

those who could not apply the cream due

to medical conditions. Inclusion criteria:

patient's age; gender; inpatient ward;

pressure ulcer risk assessment (using the

Waterlow Scale); patient's risk of falls;

cognitive status; skin characteristics such as

dry or discolored skin; number of skin

lesions; day and time of skin tear

occurrence; anatomical location of skin

lesions; the STAR Skin Tear Classification;

factors that may have contributed to a skin

lesion (assessed by a team member after

discussion with the patient) and the

location of the ward where the skin lesion

happened. Patients in the intervention

group were subject to a twice-daily

application of a pH-neutral, non-perfumed

moisturizer on their arms and legs, while

users in the control group were not subject

to any cream application.

Monthly incidence rates of skin lesions

were calculated as number of skin

lesions/days of occupied beds and the

statistics were carried out with IBM SPSS

for Windows, Version 2.3.

Applying a pH-neutral, non-perfumed moisturizing

cream on a twice-daily basis reduced skin tears by

almost 50%. This frequency helps maintain skin

hydration and supports and repairs the skin's barrier

function, regardless of the healthcare facility.

It produces evidence to support the benefits of

applying twice-daily moisturizing cream to the

extremities of hospitalized elderly patients when the

goal is to reduce the incidence of skin tears.

This relatively low

-cost intervention has the potential

to reduce healthcare costs and improv

e healthcare

outcomes.

56 | Tavares, A.

Review article

Effect of an Oral Nutrition Supplement Containing Collagen Peptides on Stratum Corneum Hydration and Skin Elasticity in

Hospitalized Older Adults: A Multicenter Open

-label Randomized Controlled Study; Nomoto T, Iizaka S., 2020 13

investigat

e the

effect of

the oral

administr

ation of a

nutritiona

suppleme

containin

g collagen

peptides

stratum

corneum

hydration

39 inpatients 65

years or older

Open-label randomized controlled study

A multicenter, open-label, randomized

controlled study was conducted to

examine the effect of 8-week oral

administration of an oral nutrition

supplement, containing 10g of collagen

peptides on stratum corneum

hydration and skin elasticity in 39

elderly inpatients in convalescent

rehabilitation wards.

Comparison with residents in the

control group.

IBM Statistical Package for the Social

Sciences (SPSS) version 19 was used to

analyze the data.

Oral nutritional supplements containing collagen

peptides can reduce skin vulnerability in the elderly and

thus helping to prevent problems such as skin tears

After 8 weeks, stratum corneum hydratio

n and skin

elasticity were significantly higher in the intervention

group that consumed oral nutritional supplements than

in the control group that did not. This indicates that oral

nutritional supplements containing collagen peptides can

reduce the vulnerability of the skin of the elderly, helping

to prevent problems such as skin tears.

The mechanisms of such improvements are unknown,

but the intake of collagen peptides contained in oral

nutritional supplements may stimulate the growth of skin

fibroblasts and the synthesis of hyaluronic acid.

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DOI: 10.56732/pensarenf.v27i1.214

Review article

Skin Tear in the Elderly; Spin M, e et al ; 2021 14

To identify, in the

scientific literature, the

knowledge produced

about skin tears in the

elderly.

Eight articles were

selected, grouped

into qualitative and

quantitative

categories, and

categorized into

themes, according

to the similarity of

the conclusions of

the analyzed

studies.

Integrative literature review

Research was carried out

on the

platforms/databases

National Library of

Medicine, Biomedical

Answers

Virtual Health

Library

, with descriptors

and the Boolean

operators "and" and "or"

between the years 2014

and 2019, using the

following inclusion

criteria: full articles made

available free of charge

and in full in Portuguese,

English and/or Spanish.

The research question

was defined based on

the PICO strategy.

Patients who presented malnutrition, hydration and low levels of

serum albumin, were more prone to the appearance of skin tears.

Activities performed during daily care can halve the incidence of

skin tears, (the use of topical skin products such as hypoallergenic

moisturizers based on lactic acid or urea twice-daily).

For bathing, the use of soaps can affect the physiological

characteristics of the skin and make it prone to the appearance of

tears. The use of alkaline, antibacterial, or perfumed soaps can

alter the skin’s microbiome, so it is recommended to replace them

with pH-neutral soaps, to use lukewarm water and to reduce the

duration and frequency of the bath (bathing every two days is

recommended).

For the prevention of skin tears in the elderly emerged the

following pillars of care:

 maintaining organic and tissue homeostasis with a focus

on proper nutrition and hydration;



avoiding trauma to fragile skin, providing a safe

environment with suitable devices;

 systematization of health care and education for elderly

skin care.



prevention mechanisms that encompass primary

prevention through a unique care plan and healthcare

education activities, focused on risk factors and

vulnerabilities, minimizing damage and complications.

58 | Tavares, A.

Review article

Preventing skin tears among older adults in the community; Palmer SJ, 2021 15

Preventing skin tears

among the elderly in the

community - guidance

from 2018 from

Wounds UK and

Wounds International.

Not applicable

Expert opinion

Not applicable

The prevention of skin tears should focus on the risk factors for the

person with skin tears.

Emollient therapy promotes general skin health and twice-daily

application reduces the incidence of skin tears by 50%.

The bath should be carried out with emollient and pH-balanced

prod

ucts when necessary. Frequency of bathing should be

minimized. The water temperature should not be too hot, so as not

to damage the epidermis, and care should be taken to dry the

patient's skin (not rub), with the use of soft cloths and towels that

are not abrasive on the skin.

The skin tear prevention regimen should also involve holistic

elements that consider the patient's general health, adequate

nutrition and hydration, and polypharmacy.

Educating the patient about preventive measures and general skin

health can be beneficial, so that they can monitor their own skin for

changes. Patients can also be encouraged to be aware of potential

risks and attentive to their environment, therefore avoiding self-

injury to fragile skin.

A self-care checklist can be pr

ovided to patients who are able to

comprehend and use it, so that they can monitor their own skin

health and wellbeing.

The risk of trauma can be mitigated with a few considerations: avoid

friction and shearing, and perform good manual handling

techniques, resorting to equipment when necessary. Equipment with

sharp and moving surfaces can be padded to provide a safe

environment, as well as proper and unobstructed lighting.

Education and awareness are vital, both for the patient and for the

health professional, to minimize the risk of skin tears.

Discussion

The discussion of results aims to provide the most relevant,

current and credible information obtained by reading the

entire sample, in order to answer our starting question:

“What are the nursing care practices in the prevention of

skin tears in the elderly?”

The sample consists of articles from different types of

studies, namely: prospective intervention; cluster-

randomized controlled clinical trial; multicenter, open-label

and randomized controlled study; integrative literature

review; and expert opinion article.

Of the final studies: two assessed the benefits of applying

topical products, moisturizing and emollient creams;

another about the effect of oral administration of a

nutritional supplement for 8 weeks on stratum corneum

hydration and skin elasticity; the integrative review identified

in scientific literature the knowledge produced on the

prevention of skin tears in the elderly; and finally, an expert

opinion article addressed the prevention of skin tears among

the elderly in the community.

Studies that have evaluated the benefits of using topical

preparations show that the incidence of skin tears in the

elderly has decreased dramatically, regardless of the place of

hospitalization.4,12 It is important to emphasize that the

studies applied the topical preparations to the upper and

lower limbs, since skin tears are more likely to occur at these

anatomical sites.

The study by Finch et al.12 showed that applying moisturizer

twice-daily in a sample of 762 users reduced skin tears by

almost 50%, highlighting the benefits associated with

applying it regardless of the healthcare setting.

Carville et al.4 found that in a sample of 980 elderly people

in 14 residential facilities in Western Australia, over a six-

month period, a gentle, downwards application on the upper

and lower limbs twice-daily of a standardized, pH-neutral,

perfume-free moisturizer reduced the incidence of skin tears

by almost 50% in the elderly. The highest percentage of skin

tears on the extremities of the lower limbs was observed in

the facilities with low clinical care. The most dependent

elderly showed a higher percentage of skin tears at arm level.

The use of topical skin products, such as hypoallergenic

moisturizers based on lactic acid or urea, twice-daily can

Pensar Enfermagem / v.27 n.01 / july 2023 | 59

DOI: 10.56732/pensarenf.v27i1.214

Review article

halve the incidence of skin lesions, and the use of alkaline,

antibacterial or perfumed soaps can alter skin’s microbiome,

so it is recommended to replace them with pH-neutral

soaps, to use of lukewarm water and to reduce the duration

and frequency of the bath, (bathing every two days is

recommended), advocated by Spin et al..14

This conclusion is also reached in Palmer's15 article, stating

that emollient therapy promotes general skin health and

twice-daily application reduces the incidence of skin tears by

50%. The frequency of bathing should be minimized and

only performed when necessary, with the use of pH

balanced emollient products. The water temperature should

not be too hot, so as not to damage the epidermis, and care

should be taken to dry the skin of the patient (not rub), with

the use of soft cloths and towels that are not abrasive on the

skin.

According to Palmer,15 the prevention of skin tears should

involve holistic elements that consider the patient's general

health, proper nutrition and hydration.

Advising the patient about skin tears and preventive

measures can be beneficial so that patients are able to

monitor changes in their own skin and avoid self-injury to

fragile skin.

The risk of potential trauma can be mitigated with a few

considerations: avoiding friction and shearing, good manual

handling techniques resorting to devices such as hoists and

transfers; equipment and furniture should be padded; and

ensuring a safe environment (for example, with proper and

unobstructed lighting).

Nomoto & Iizaka's13 study, concludes that administering

oral nutritional supplements containing collagen peptides

for 8 weeks can reduce skin vulnerability among the elderly

and thus prevent skin tears. The mechanisms of such

improvements are unknown, but the intake of collagen

peptides contained in oral nutritional supplements may

stimulate the growth of skin fibroblasts and the synthesis of

hyaluronic acid.

Spin et al.,14 state that patients who present malnutrition,

dehydration, and low levels of serum albumin are more

prone to the appearance of lesions, as the body mass index

contributes to the premature ageing of the skin.

Therefore, and according to Spin et al.,14 for the prevention

of skin tears in the elderly emerged four pillars of care:

▫ maintaining organic and tissue homeostasis with a focus

on proper nutrition and hydration;

▫ avoiding trauma to aging skin, providing a safe

environment with suitable devices;

▫ systematization of health care and education for elderly

skin care.

prevention mechanisms that encompass a unique care plan

and healthcare education activities, focused on risk factors

and vulnerabilities, minimizing damage and complications.

Education and awareness are vital, both for the patient and

for the health professional, to minimize the risk of skin

tears.

Conclusion

The development of this integrative literature review

allowed us to obtain some answers to the initially proposed

PEO question.

From the analysis of the articles, which were part of the

sample, we conclude that there is a relationship between the

topical application of skin care products, such as

moisturizing creams and emollients, and the reduction in the

prevalence of developing skin tears, by about 50%.

Though the study had a small sample size, it showed that

administering oral nutritional supplements with 10g

collagen peptides can reduce skin vulnerability among the

elderly and thus prevent skin tears.

Primary prevention and the promotion of healthcare

education for elderly skin care play a critical role in

preventing skin tears in this age group. The holistic view

towards the person with skin tears, promotion of skin care,

hygiene care management, a safe environment and a

balanced diet are pivotal to the prevention of skin tears in

the elderly regardless of whether they are in a home or

institutional setting.

After the systematic literature review, the scarcity of studies

to support nursing care in the prevention of skin tears in the

elderly was evident.

Considering that skin tears are painful, affect the quality of

life of the person with the injury and the caregivers, can be

a source of infection and cause burdens for the

person/family and the health system, further studies on this

issue are essential in the future.

This study, for the health professionals who carried it out,

was enriching in the sense that knowledge was obtained

about the benefits applying of skin care products, such as

moisturizing and emollient creams (mainly by following a

twice-daily application), serving as a basis for the

development of technical guidance in their respective health

facilities.

As nurses, we have the responsibility to educate families and

caregivers, as well as health operational technicians, on the

prevention of skin tears. This study will serve as a basis for

the development of future in-service training on the subject,

targeting health professionals from the multidisciplinary

team and/or informal caregivers.

With low-cost, easy to apply care, we can reduce the

incidence of skin tears by about 50%, increase the quality of

life of individuals, and reduce the burden of this type of

tissue damage on the health system and patients/families.

Authors’ contributions

ACCT: Elaboration of the article, from data collection,

analysis and interpretation of data, writing of the work and

revision of the article.

LMSCO: Elaboration of the article, from data collection,

analysis and interpretation of data, writing of the work and

revision of the article.

MIRVB: Elaboration of the article, from data collection,

analysis and interpretation of data, writing of the work and

revision of the article.

60 | Tavares, A.

Review article

Conflicts of interests

No conflict of interest declared by the authors.

References

1. Chang YY, Carville K, Tay AC. The prevalence of skin

tears in the acute care setting in Singapore. Int Wound J

[Internet]. 2016;13(5):977–83. Available from:

https://onlinelibrary.wiley.com/doi/10.1111/iwj.12572

2. Munro EL, Hickling DF, Williams DM, Bell JJ.

Malnutrition is independently associated with skin tears in

hospital inpatient setting findings of a 6-year point

prevalence audit. Int Wound J. [Internet]. 2018;15(4):527–

33. Available from:

https://onlinelibrary.wiley.com/doi/10.1111/iwj.12893

3. LeBlanc K, Campbell K., Beeckman D, et al. Best practice

recommendations for the prevention and management of

skin tears in aged skin: ISTAP best practice

recommendations [Internet]. London: Wounds

International; 2018. 21 p. Available from

https://www.woundsinternational.com/uploads/resources

/57c1a5cc8a4771a696b4c17b9e2ae6f1.pdf

4. Carville K, Leslie G, Osseiran-Moisson R, Newall N,

Lewin G. The effectiveness of a twice-daily skin-

moisturising regimen for reducing the incidence of skin

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from:

https://onlinelibrary.wiley.com/doi/10.1111/iwj.12326

5. Idensohn P, Beeckman D, Santos VLC de G, Langemo

D, Gloeckner M, Woo K, et al. Ten top tips: skin tears.

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7/article-details/ten-top-tips-skin-tears

6. Netto MP; Borgonovi N Biologia e Teorias do

Envelhecimento. In Papaleo Neto. Gerontologia: a velhice

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consensus statements for the prevention, prediction,

assessment, and treatment of skin tears©. Adv Skin Wound

Care. [Internet]. 2011;24(9 Suppl):2–15. Available from:

https://journals.lww.com/aswcjournal/Fulltext/2011/090

01/Skin_Tears__State_of_the_Science__Consensus.1.aspx

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term care facilities. Ostomy Wound Manag [Internet]. 2018;

64 (4): 30–6. Available from:

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10. Vernon T, Moore K, Vowden K, Vowden P. A safe first-

line approach to managing skin tears within an acute care

setting (part 2). Wounds UK [Internet]. 2019;15(3):56–62.

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uk.com/journals/issue/581/article-details/safe-first-line-

approach-managing-skin-tears-within-acute-care-setting-

part-2

11. Soares CB, Hoga LAK, Peduzzi M, Sangaleti C,

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métodos utilizados na enfermagem. Rev Esc Enferm USP

[Internet]. 2014; 48(2):335-45. Available from:

https://www.scielo.br/j/reeusp/a/3ZZqKB9pVhmMtCn

svVW5Zhc/?format=pdf&lang=pt

12. Finch K, Osseiran-Moisson R, Carville K, Leslie G,

Dwyer M. Skin tear prevention in elderly patients using

twice-daily moisturiser. Wound Pract Res J [Internet].

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/4015/8520/6574/finch.pdf

13. Nomoto T, Iizaka S. Effect of an Oral Nutrition

Supplement Containing Collagen Peptides on Stratum

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00/Effect_of_an_Oral_Nutrition_Supplement_Containing

.4.aspx

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BC, Popim RC, et al. Skin Tears in the Elderly. ESTIMA,

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| 61

Pensar Enfermagem / v.27 n.01 / july 2023

DOI: 10.56732/pensarenf.v27i1.258

Quantitative Original Article

How to cite this article: Figueiredo S, Brites M, Sousa J. Empowerment of hypertensive individuals and

families in disease management: a community nursing intervention. Pensar Enf [Internet]. 2023 Jul; 27(1):

. Available from: https://doi.org/10.56732/pensarenf.v27i1.258

Empowerment of hypertensive individuals and

families in disease management: a community

nursing intervention

Introduction

Hypertension is a chronic disease with high national prevalence, being the main risk factor

for cardiovascular brain disease. Thus, training for disease management is essential for

disease control and eviction of complications. By determining the level of knowledge of

the person and family about hypertension, it was possible to structure the intervention

aimed at promoting autonomy for conscious decision-making, adopting healthy lifestyles

and active participation in their health project.

Objective

Empower hypertensive people aged 45-65 years and family, enrolled in a Family Healthcare

Unit in the intervention area of the Health Centre’s Cluster Almada/Seixal.

Methods

The analytical cross-sectional observational study was based on the methodology of Health

Planning, underpinned by the theoretical framework of Dorothea Orem's Nursing Self-

Care Model. A questionnaire was designed and applied to conduct the Situation Diagnosis

for the sociodemographic characterization of the sample and to identify the behaviors for

disease management. The sample was composed using the purposive sampling technique.

A favorable opinion was previously obtained from the Ethics Committee for Health of the

Regional Health Administration of Lisbon and Tejo Valley (ARSLVT) under reference -

5043/CES/INV2022.

Results

The situation diagnosis revealed a deficit of knowledge about the disease and its

management, as well as a deficit of self-care, which compromises the quality of life of the

participants. With the prioritization of the problems, health education was selected as a

strategy. After the community intervention, 70% of the participants assess and record daily

BP values; 100% of them correctly identify risk behaviors for worsening hypertension; 63%

of the participants practice regular physical activity; 87% of the participants report having

reduced the daily intake of salt; and, 100% of family members identified two areas in which

their family member needs more support, being the most frequent, encouragement for

physical activity and restriction/substitution of salt in food.

Conclusion

This project was an important contribution to the empowerment of the hypertensive

person and family to manage the disease, since after its completion there was an increase

in knowledge of the participants, as well as behavioral changes associated with healthy

lifestyles.

Keywords

Empowerment; Health management; Treatment Adherence and Compliance;

Hypertension; Nurse.

Soraia Nobre Figueiredo1

orcid.org/0000-0001-7857-6614

Maria Jorge Brites2

orcid.org/0000-0002-7650-0066

José Edmundo Sousa3

orcid.org/0000-0003-2136-4471

1 Master. Hemato-oncology Service, Centro Hospitalar

e Universitário de Lisboa Central, Lisbon, Portugal.

2 Master. Family Healthcare Unit Ponte, ACeS Almada-

Seixal, Almada, Portugal.

3 PhD. PhD Professor of the Lisbon School of

Nursing, Adjunct Professor, Department of

Community Health, Lisbon, Portugal.

Corresponding author

Soraia Nobre Figueiredo

E-mail: soraia.nobre87@gmail.com

Received: 07.02.2023

Accepted: 19.05.2023

62 | Figueiredo, S.

Quantitative Original Article

Introduction

Arterial Hypertension (HT) affects one billion people

worldwide, accounting for 7.6 million premature deaths

worldwide. It is the most prevalent risk factor for

cardiovascular disease (CVD), causing approximately 14%

of all deaths worldwide, and 143 million disability-

associated life years [Disability Adjusted Life Years

(DALYs)].1,2 In Portugal, according to data from the

Instituto Nacional de Saúde Doutor Ricardo Jorge

(INSA)3, resulting from the National Survey with Physical

Examination (INSEF)3, the national prevalence of

hypertension is 36%. It constitutes a public health problem,

given its high prevalence in the adult population, low levels

of therapeutic adherence and often late diagnosis4. It is a

chronic non-transmissible disease, which consists of the

sustained elevation of systolic blood pressure values equal

to or greater than 140mmhg and diastolic pressure values

equal to or greater than 90mmhg.5,6 Its installation is

progressive, which is why, initially, its signs and symptoms

are not perceptible, however its continuous increase over

time generates lesions in the vessels, weakening them,

which may later give rise to aneurysms, cerebrovascular

accident (CVA), heart failure (HF), acute myocardial

infarction (AMI), renal failure, among others1. Its

symptoms are nonspecific and easily associated with other

causes, leading to late diagnosis4. It is classified into three

levels of severity: (1) Grade 1 - mild arterial hypertension

(140-159/ 90-99 mmHg); (2) Grade 2 - moderate arterial

hypertension (160-179/100-119 mmHg); and (3) Grade 3 -

severe arterial hypertension (180/110 mmHg), according to

the etiology it is classified as: essential, primary or idiopathic

hypertension, the most frequent (unknown cause); and

secondary hypertension, less frequent, derives from an

associated pathology (potentially treatable or not), such as,

for example, kidney disease, obstructive sleep apnea

syndrome; obesity; among others4,5,6. Hypertension is a

multifactorial condition, according to the Portuguese

Society of Hypertension (SPH)7 the risk factors for its

development are, essentially, uncontrollable genetic factors,

related to ethnicity, age, history familiar; behavioural

factors, linked to unhealthy lifestyles, subject to

modification; and socioeconomic factors such as education

level, low family income and poor housing conditions. As

for potentially modifiable risk factors, the World Health

Organization (WHO)1 identified overweight and/or

obesity, smoking, sedentary lifestyle, excessive

consumption of alcoholic beverages, excessive intake of

foods high in fat and salt. In Portugal, about two thirds of

hypertensive people do not know that they are, and of

those who are diagnosed, only 11% have their hypertension

controlled3.

Amorim et al.8 suggest that the management of

hypertension should mostly be the responsibility of primary

health care, thus in this sense, urging the need to identify

effective strategies for managing the disease, preventing

situations of disability, and reducing the quality of care. life,

which lead to a high expression in the consumption of

health services, medications, and hospitalization episodes1.

The current rules of the Directorate-General for Health

(DGH)9 dictate that “the person with HT must have the

opportunity to make informed decisions about their

treatment”(p.14) and that for this the treatment should “be

culturally appropriate and accessible”9(p.4), as well as

allowing “family members to be involved in decisions

about patient care and indicated treatment”.9(p.5) Since it is

fundamental to involve the person and family in the

therapeutic process, we are guided by the assumption that

the better informed they are about the disease, therapy, and

healthy lifestyles, the greater the autonomy in managing the

disease, achieving better results of health4. Aligning the

aforementioned assumptions with the National Health Plan

(NHP) 2021-2030 “the complexity of health problems and

their determinants, and their dynamics of interpenetration

and dependence require us to move (...) to

multidimensional approaches”,10(p.36) they choose

“Education for (Self)Management of chronic illness” as

one of the intervention strategies aimed at health

determinants.10(p.182)

In the field of chronic disease (CD) management, the

differentiated intervention of the Specialist Nurse in

Community Nursing (SNCN) aims at the systematic and

cohesive training of the person and family for the

management of chronic disease.11 In order to promote a

practice based on the most current scientific evidence, as

Ferreira et al. 12 points out, it is essential to promote

adherence to the therapeutic regimen, especially with

regard to physical activity and dietary care, and the CEE

must act on these determinants to increase the effectiveness

of HT disease management. Thus, and according to the

studies consulted, regarding the most effective nursing

interventions for training hypertensive patients and their

families, the potential of Health Education (HE) in groups

or individually stands out, with a focus on changing

behaviours in everyday life, monitoring, promoting health

literacy, person-centred care, and family involvement.

Objective

Train hypertensive people between the ages of 45 and 65

and their families to manage the disease, enrolled in a

Family Health Unit (FHU) in the intervention area of the

Grouping of Health Centres (ACeS) Almada/Seixal.

Method

An analytical cross-sectional observational study was

carried out,13 developed according to the Health Planning

methodology (Tavares, 1990)14, based on Orem's Self-Care

Model (2001)15, aiming at predetermining a set of actions

to achieve the expected results.16,17 Planning, in health, “is

a continuous process of forecasting resources and

necessary services, to achieve certain objectives according

to the established order of priorities, allowing to choose the

optimal solution(s) in several alternatives; these choices

take into account current or foreseeable future

constraints”.14(p.29) It consists, then, of a continuous

dynamic process, with several stages that provide for

Pensar Enfermagem / v.27 n.01 / july 2023 | 63

DOI: 10.56732/pensarenf.v27i1.258

Quantitative Original Article

methodological rigor. The community intervention was

developed in the area of influence of ACeS A-S. The

population of this geographical area has great cultural

diversity, low level of education and the highest

unemployment and morbidity rate in ACeS A-S. 17 With an

illiteracy rate of 5.21%, it is the highest in the country. It

has an unemployment rate of 19%. 17(p.13) According to PLS

A-S17 regarding the priority population groups, “(...) the

analysis of the health status of the population showed the

high risk of premature death of the population residing in

the municipality of Almada, namely associated with

ischemic heart disease(...)”.17(p.13) As diseases of the

circulatory system are the most frequent cause of

proportional morbidity and mortality in all ages and

genders within the area of influence of ACeS. The project

population is all individuals enrolled in the FHU, the target

population being defined as users enrolled in the USF with

a diagnosis of uncomplicated hypertension in the age group

between 45 and 65 years old, enrolled in the FHU, which

translates into in a total of 113 people. The following

inclusion criteria were defined: population diagnosed with

uncomplicated hypertension (coded with the ICPC-2 code

K86 in the MedicineOne computer system); in the

aforementioned age group; and, who voluntarily agreed to

participate in the study. The sample was constituted using

the technique of convenience or intentional sampling,

composed of people with the aforementioned diagnosis

and age group, who had a surveillance consultation with the

family doctor and/or nursing consultation in the period

between June 8th and 30th. 2022, and of these, those who

made themselves available and gave their informed consent

to participate in the collection of information. Integrated

by thirty participants. A questionnaire was constructed and

applied, which is structured in three parts: 1st part -

sociodemographic characterization; 2nd part - clinical

situation and lifestyle and 3rd part - The Medication

Adherence Reasons Scale (MARS)18. The scale consists of

seven questions structured in order to be able to synthesize

the habits and beliefs of adherence to treatment medicinal

product, was created by Morisky, Green and Levine (1986)

translated, adapted and validated for the Portuguese

population and culture, by Delgado and Lima18, who were

requested and obtained authorization for its application. To

ensure an ethically sound intervention, authorization was

requested to carry out the project from the USF

Coordinator and Mr. Director of ACeS Almada/Seixal,

having been granted. Obtained a favourable opinion

(5043/CES/2022) from the Health Ethics Committee

(HEC) of the Regional Health Administration of Lisbon

and Tagus Valley (ARSLVT). After the favourable opinion

of HEC ARSLVT, the participants were informed about

the methodology, purpose and objectives of the project,

and the questionnaires were applied to all participants in the

sample, ensuring that they completed and signed the

informed consent. Ensuring that they understand the risks

and benefits of their participation, their rights, including the

right not to participate or to withdraw from participation at

any time without prejudice. A duplicate informed consent

form was given to each participant. The questionnaires

were self-completed, with the exception of situations in

which the participants needed help to complete them, due

to illiteracy and/or vision changes, being replaced in this

task by one of the project's researchers. However, aiming

to minimize data bias, the questionnaires were completed

at the beginning of the nursing consultation, and those that

were completed with assistance, the questions were read as

written in the questionnaire. The collected data was coded,

ensuring anonymity and confidentiality.

The empirical material, resulting from the application of

the data collection instrument, was treated using

descriptive statistics analysis, through the SPSS software –

Statistical Package for the Social Sciences (28.0.0.0

version).

Results

Participants have a mean age of 56.27 (SD=6.38) years,

47% of participants are male. With regard to the

constitution of the household in the sample, 34% of

respondents live in a nuclear dyad type family after the

children leave, 23% in a nuclear family with spouse and

children, 13% are single parents and 30% refer to living

alone, the reason being most frequently, the death of a

spouse. It was asked if there is any other element in the

household with HT, 47% answered yes, referring to being

the spouse, 60% of the participants are professionally

active, in different professional areas. Regarding the

monitoring of Arterial Pressure (AP) values, 66% of the

respondents only evaluated it in a biannual consultation at

the FHU. Regarding the practice of physical exercise, 87%

of the participants reveal high levels of physical inactivity

and sedentary lifestyle. They were asked if they had changed

their lifestyle habits after the diagnosis of HT, 73%

reported not having changed, and the 27% who answered

affirmatively, were asked which habits had changed, and

these responded to the reduction of salt in their diet, not

specifying what is the amount of salt ingested previously,

nor the current reduction, the questionnaire does not allow

us to quantify the number of grams ingested per day.

Regarding the control measures they use in their daily lives,

80% of the participants mention only complying with the

prescribed medication without associating with other

control measures. As for salt restriction in their daily diet,

53% reported not restricting it. Regarding family support

for the implementation of measures to control their HT,

70% reported not having support from their household.

Most participants do not consider changing lifestyle habits

as a benefit in controlling hypertension. The MAT18 scale

was also applied to identify medication adherence

behaviour, since 80% reported only complying with the

medication as a measure of hypertension management.

Based on the authors' recommendation, 39% of the

participants do not meet all the criteria for adherence to

treatment. The answers to the questions that make up the

scale were analysed separately, and the weaknesses in the

adherence criteria were listed, namely: forgetting to take,

delay in taking the time, treatment abandonment due to

improvements and abandonment due to the end of the

64 | Figueiredo, S.

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medication. On average, study participants were

overweight, with an average weight of 75.46 kg, in relation

to personal history, 60.0% of non-insulin dependent

Diabetes Mellitus and 80% of participants suffer from

dyslipidaemia.

After surveying the problems and consequent needs,

nursing diagnoses were prepared according to the

International Classification for Nursing Practice (ICNP)19:

(1) health surveillance [on HT] compromised; (2)

knowledge about compromised physical exercise regime;

(3) knowledge about the committed dietary regimen; (4)

knowledge about the process of changing committed

behaviours; (5) knowledge [about HT] compromised; (6)

compromised family knowledge about the disease; (7)

compromised adherence to the therapeutic regimen; (8)

compromised self-care; (9) compromised family capacity to

manage the regime; (10) risk of impaired cardiovascular

function. Thus, defining the starting point from which the

benefit of the intervention will be evaluated14. The

prioritization of real health needs was carried out with the

support of experts, according to the Hanlon Method. The

method was applied in an adapted way to the sample,

considering the criteria set out by Tavares14: (1)

Amplitude/Magnitude of the Problem; (2) Gravity; (3)

Effectiveness of the Solution and (4) Feasibility of the

Project classified with the acronym PEARL (P- Relevance,

Economic Feasibility, Community Acceptance, Resources

and Legality). According to the results obtained, the

objective and the time limit of the project, we intervened in

the problems that obtained the highest score, namely,

compromised health surveillance; family knowledge about

the compromised disease; compromised self-care;

knowledge [about HT] compromised; knowledge about the

process of changing committed behaviours; knowledge

about committed exercise regime; and knowledge about the

committed dietary regimen. We continued with the setting

of objectives, formulating the general objective - To train

hypertensive people and their families enrolled in the FHU

to manage the disease, from October 2022 to January 2023

and the specific objectives for the target population in the

same time period: (1) train hypertensive people and their

families on the importance of health surveillance; (2) train

the hypertensive person and family to manage the exercise

regimen; (3) train the hypertensive person and family to

manage the dietary regimen; (4) enable the hypertensive

person and family to identify risk factors; (5) train the

person and family on the health gains of changing

behaviours in the control of hypertension; and, (6) involve

the family in the process of managing the illness of the

hypertensive family member. With regard to the selection

of strategies, it was essential to rethink the CD management

concept. According to WHO20, the costs attributable to CD

for health systems worldwide are equivalent to 60%-80%

of total expenses, revealing the burden and problems of

financial sustainability for health systems. In Portugal,

according to INSA3 data, around 43.9% of the Portuguese

population suffers from CD. Facts that highlight the

importance of implementing strategies that promote CD

management, as a guarantee of clear gains in health with

positive repercussions in terms of health costs and quality

of life20. By definition, the concept of CD management

consists of a system coordinated interventions aimed at the

individual, group or population, through the

implementation of strategies and/or creation of programs

that integrate the most recent norms and guidelines, for the

promotion of autonomy for the self-care of the person with

CD21.

Considering that the community intervention developed

corresponds to the level of secondary prevention, aiming

to empower the person and family to make autonomous

decisions, increasing their motivation to change

behaviours and promote the ability to manage the disease,

we combine a set of strategies health promotion, such as

health education, involvement of the person and family

and follow-up. In this process, possible barriers to existing

learning were taken care of and thus implemented

strategies to facilitate learning and to motivate and

encourage the participation of individuals and families.

The activities carried out allowed the achievement of the

defined objectives, and aimed to provide adequate follow-

up to the participants, creating an environment that

promotes the acceptance of CD, motivating them to

acquire knowledge, change behaviours and manage the

disease. As methods we used group discussion, analogies,

lecture, demonstration and practice, questions, and

answers.

The group sessions were an opportunity to encourage

participants to identify strategies, share experiences and

identify.

We also individually monitored the person and family in

the context of nursing consultations and home visits of

participants who revealed some degree of dependence

according to the Barthel scale assessed in Sclinic®, using

Figueiredo's family assessment model22, more specifically

in the functional domain (caregiver role). The activities

included a walk, ludic-pedagogical games, video exhibition,

AP self-assessment training, and the transmitted

information was compiled and distributed in the form of

informative leaflets.

In order to evaluate the objectives, activities and indicators

of the community intervention, the knowledge obtained by

the participants regarding the addressed themes was

considered, in line with the defined objectives and result

indicators. By weighting: the responses of the participants

after the end of the individual educational process in an HT

nursing consultation; answers to the questionnaires applied

after the end of the HE sessions; and finally, after the end

of all activities, a final questionnaire was applied consisting

of some questions extracted from the data collection

instrument and questions that intend to measure the

acquisition of knowledge and the possible change of

behaviours for the management of the disease. Its analysis

and comparison with values obtained in the DS phase

allows inferring that all objectives were achieved as shown

in Table 1. As for the changes obtained with the

intervention, we analysed using descriptive statistics, the

data obtained with the final questionnaire, which was

presented in tables 2, 3, 4, 5 and 6.

Pensar Enfermagem / v.27 n.01 / july 2023

| 65

DOI: 10.56732/pensarenf.v27i1.258

Quantitative Original Article

Chart 1 – Evaluation of the result indicator, referring to the defined operational objectives

Data referring to changes in behaviour were also

analysed, which we present in a table, contrasting

the initial data and those obtained with the

intervention.

Chart 2 – Comparison of the variable frequency of assessment and recording of AP in the 1st and 2nd moments

How often do you measure

and record your Arterial Blood

Pressure?

1st Moment (July 2022)

Diagnosis of situation

f=30

2nd Moment (January 2023)

Final evaluation

f= 30

Always

70%

Often

30%

Chart 3 – Comparison of the variable HT control measures in the 1st and 2nd moment.

What kind of measures are

taken to control HT

1st Moment (July 2022)

Diagnosis of situation

f=30

2nd Moment (January 2023)

Final evaluation

f= 30

Just medication

80%

Decreased fat intake

23%

Medication and reducing salt

intake

17%

77%

Objective: 30% of participants evaluate and record their blood pressure values

Result Indicator

Value obtained

% of participants who regularly assess and record blood pressure values

70%

Objective: 70% of participants and their families who were present at the activities identified risk behaviours

Result Indicator

Value obtained

% of participants who identified risk behaviours after EC.

100%

Objective: 50% of the participants who were present at the activities identified the importance of practicing 30

minutes of physical activity in a row, daily or at least three days a week

Result Indicator

Value obtained

% of participants who consider it important to perform regular physical activity

100%

Objective: 50% of the participants who attended the activities would restrict salt intake in their daily diet

Result Indicator

Value obtained

% of participants restricting salt intake

87%

Objective: 70% of the participants who attended the activities could identify options for replacing salt in their

daily diet.

Result Indicator

Value obtained

% of participants who correctly identify options for replacing salt in their diet, through

the 2nd HE assessment questionnaire “control your heart, reduce salt in your diet”

100%

66 | Figueiredo, S.

Quantitative Original Article

Chart 4 – Comparison of the physical activity practice variable in the 1st and 2nd moments

Chart 5 – Comparison of the dietary salt restriction variable in the 1st and 2nd moments

Salt restriction in food

1st Moment (July 2022)

Diagnosis of situation

f=30

2nd Moment (January 2023)

Final evaluation

f= 30

Yes

47%

87%

53%

13%

Chart 6 – Comparison of the family support variable in the 1st and 2nd moments

Family support to follow HT

control recommendations

1st Moment (July2022)

Diagnosis of situation

f=30

2nd Moment (Janeiro 2023)

Final evaluation

f= 30

Yes

30%

80%

70%

20%

After analysis and evaluation, all the objectives were

reached, as well as the pre-established values, regarding

the process and activity indicators. The results reflect the

acquisition of knowledge by the participants, as well as the

acquisition of skills that promote behaviour change,

adopting healthier lifestyles.

Discussion

The increase in CD worldwide is a multifactorial

phenomenon, however it is essentially related to the

lifestyles and consumption patterns of today's society.

Approximately half of people with CD develop

comorbidities associated with the difficulty in managing

the disease1,23. This fact points to the importance of

adopting health promotion strategies in an approach that

promotes disease management.

Hypertension is a CD with a high national prevalence3,25,

associated with non-adherence to the therapeutic

regimen.1,25,26 Inappropriate behaviours and lifestyles are

generators of comorbidities that lead to loss of quality of

life and high economic impact, social and family life, as

well as the increase in premature deaths27,28,30. Thus, the

central importance of the SNCN in the process of

empowering the person and family to develop skills that

facilitate decision-making and the implementation of self-

care behaviours emerges, as stated by Silva et al.29.

In the community intervention developed, the main

needs identified in the SD stage corroborate what has

been verified in other studies developed in

Portugal30,31,32,33, where the need to promote nursing

interventions for guidance, knowledge acquisition, skills

development, and instrumentation in self-care. Thus,

according to the defined objectives, HE was used as a

strategy, aiming at training for the management of the

disease of the hypertensive person and family. As

mentioned by Oliveira et al.,35 in their study, HE as a

strategy to promote adherence to healthy lifestyles for the

control and management of hypertension is the most

effective strategy with regard to changes in lifestyles,

having found a significant change regarding salt intake,

physical activity, and blood pressure control. The same is

reaffirmed by Gama et al.36 in the bibliographic review,

where HE is highlighted as the most effective

intervention for increasing levels of knowledge,

adherence to recommendations and healthy lifestyles of

hypertensive people.

Practice physical activity

1st Moment (July 2022)

Diagnosis of situation

f=30

2nd Moment (January 2023)

Final evaluation

f= 30

Yes

13%

63%

87%

37%

Pensar Enfermagem / v.27 n.01 / july 2023 | 67

DOI: 10.56732/pensarenf.v27i1.258

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Thus, in relation to the sample, the gender variable

deserves special attention, because although there are no

significant differences in prevalence between genders

within the sample, there are different self-care behaviours,

with female participants being more participatory in the

activities carried out, a fact that we relate to the different

perception of their health condition, greater demand for

health services, as well as greater compliance with the

recommendations of health professionals, as verified in

the study developed by Motter et al.37

As for the level of education, most of the participants

have low levels of education, as in the study by Ribeiro32,

corroborating the data expressed in the INSEF3, where a

higher prevalence of hypertension is verified in

individuals with a lower level of education. Regarding the

SD phase, poor monitoring of Arterial Pressure (AP)

values was verified, most participants only evaluated the

tension in the context of a consultation at the FHU or

occasionally at the pharmacy when associated

symptomatology (dizziness, headache, or tinnitus),

revealing little knowledge about the disease, as well as

skills for monitoring and evaluating AP at home. Recent

studies highlight the importance of monitoring AP in

disease management.27,30,36 A high rate of sedentary

lifestyle and physical inactivity, with 87% of participants

not practicing regular physical activity, a value higher than

the values described in the Report on the point of the

global situation of physical activity33, 27.5% of adults do

not comply with the levels of physical activity

recommended by the WHO34. With regard to salt

restriction in their daily diet, 53% refer not to restrict it, a

value that coincides with national studies, as in the priority

program for healthy eating.39,41,25

With regard to changing lifestyle habits after the diagnosis

of hypertension, most participants did not make any

changes, a fact similar to the results of recent studies,

where participants prior to the intervention had not

autonomously, following the diagnosis, changed lifestyle

habits35 ,40, which we relate to the lack of knowledge about

the disease, its course and management. With regard to

the control measures they use in their daily lives to

manage high blood pressure, at the time of the SD, most

participants were only complying with the medication

prescribed by the doctor, not adhering to the non-

pharmacological measures for controlling high blood

pressure25, data that coincide with the study by Ferreira et

al.13; Pereira38; Dantas et al.44, where the rate of adherence

to control measures varies between 16.9% and 49.8%.

Regarding family support for the implementation of

measures to control their hypertension, 70% of

participants deny having family support for controlling

hypertension, revealing the family's non-involvement in

the disease management process. Thus, once again

highlighting the need to promote adherence to the

therapeutic regimen, increasing the quality of care

provided to the person and the family, and thus,

consequently, health gains32,44,46,46.

The results obtained after the intervention reveal the

success in achieving the defined objectives, corroborating

the scientific evidence consulted, which highlights the HE

as a fundamental resource in the therapeutic intervention

of nurses, to increase knowledge and change

behaviors.36,38,42,43,44,45

The implementation of the educational process, in the

context of a nursing consultation, HE group sessions and

home visits revealed a high potential in the acquisition of

knowledge and consequent motivation for changing

behaviors30. It was possible to promote the strengthening

of the bond between the professional of health, the

person, and the family, encouraging the development of

educational processes aimed at the person and the

specificities of each family, which, as a social support for

the hypertensive person, are crucial for the

implementation and maintenance of healthy

habits.29,30,43,45

In the FHU where the community intervention took

place, an HT nursing consultation (CEHTA) has not been

implemented, so a guide to good practices for the

CEHTA was developed and applied in a nursing

consultation, which includes the most recent protocols

and guidelines for management. HT, which made it

possible to guide the intervention in a way adapted to the

person and family, guiding the educational process in each

consultation to the needs felt, avoiding redundant

teaching,29,35,43 stimulating adherence to the

recommendations for the management of HT, through

the counselling and monitoring.22,30,42

Therefore, we believe that the activities carried out, the

distribution of informative material, the on-site training

of AP self-assessment, the supply of instruments (label

decoder) that facilitate the interpretation of the amount

of salt in each food at the time of its purchase and the

ludic games, allowed establishing a positive correlation

between the educational process developed, adherence to

recommendations regarding lifestyle and the reduction of

risk factors related to the disease, as an example of this we

have the increase of participants who evaluate and record

blood pressure values frequently, who decreased daily salt

intake and increased regular physical activity.

In short, the SNCN, through specific skills48, promotes

the process of empowering the person and family to

manage the disease, increasing their involvement in the

health project, fostering an attitude that promotes

autonomy for informed decision-making. The HE

strategy contributed to improving the health conditions

of the group, increasing health literacy, involvement and

identification, strengthening the therapeutic relationship,

improving the quality of care.36,45,49

The results obtained allow us to state that the planning of

the appropriate intervention for the population, the HT

nursing consultation, home counselling and partnerships

that reinforced the transmission of information about the

dietary regimen, physical activity, health surveillance, self-

care and family involvement, promoted greater adherence

to the therapeutic regimen, as well as increased the change

in the behavioural pattern.

During the course of the community intervention, some

limitations were identified, delaying its initiation and

68 | Figueiredo, S.

Quantitative Original Article

development, given the delay in responding to the various

requests necessary to ensure ethical procedures. In an

initial phase, there were several requests for

authorizations and opinions that could not be requested

simultaneously, the request for an opinion was first

submitted to the TIN of ACES A-S and only after the

response with a positive opinion, was it possible to submit

it to the CES of ARSLVT), the which conditioned the

beginning of the application of the data collection

instrument. After the opinions, participants were called

who, given their age group, are professionally active,

which made it difficult for them to be available to attend

the FHU, leading to a sample of thirty participants in a

universe of one hundred and thirteen. However, it was

possible and extremely important to survey the real needs

of the population, as well as its contribution to the proper

development of community intervention.

Conclusions

The increase in life expectancy, combined with changes in

the lifestyles of the population, generates an increase in

CD.39 The high prevalence of hypertension at national

level leads to high costs, at economic, social, and

individual levels40, which makes it urgent to intervene.

Hypertension must be approached considering the most

effective nursing interventions, through evidence-based

practice, considering the evolutionary course of the

disease, in order to obtain health gains. For this reason,

the intervention of the SNCN48 is fundamental, which in

its daily practice resorts to partnerships with other

professionals, as well as with the person and family,

promoting their active participation in the whole process.

The person with CD and their family need systematic

monitoring given the specificity of their needs29,42,45,46

through an integrated approach, considering the changes

they manage to make, the necessary adaptations, internal

resources, support networks and life situation.

The community intervention developed, supported by the

Health Planning methodology and the theoretical

framework of Orem15, contributed to the training of

hypertensive people and their families to manage the

disease in a FHU of ACeS A-S, constituting a

contribution to practice by highlighting the benefit of the

SNCN intervention in the process of training

hypertensive people to manage CD, leading to an

approach centred on the person and family with a focus

on avoiding complications, maintaining quality of life and

involving the family. It highlights the contribution of the

SNCN's intervention in improving the population's

health through interventions based on Health Promotion

and Education. It reveals that HE strategies within the

scope of CD management mobilized by nurses enhance

autonomous and informed decision-making by

hypertensive people in their daily lives with adequate

family support. It also consists of a contribution to

training in the sense that it encourages the development

of educational competence integrated into the curricula of

the nursing course, with the mobilization of individual

resources in clinical practice. Considering that, for this

purpose, training should begin in the degree course,

deepening in specialization courses, with the transmission

of theoretical assumptions and research results, which

allow the development of specific skills in interpersonal

relationships and knowledge, guiding conduct, and

dissemination of relevant information to the

target audience.

Finally, it constitutes the same as a contribution to

research, as scientific evidence, on the benefit of

interventions in the context of nursing consultation, HE

sessions and home visits, in the process of training the

person and family for the management of CD.

With the end of the community nursing intervention,

most of the project participants increased their knowledge

regarding the course of the disease, measures to control

and monitor HT and a healthy lifestyle adapted to their

condition, revealing behavioural changes in their daily

lives.

Regarding the theoretical framework, it was decided to

use the support-education system, recommended in

Orem's Self-Care Deficit Theory1, which proved to be

adequate and essential for the acquisition of knowledge

and training of the person and family for conscious and

informed decision-making the management of the

disease. This system presupposes the association of

effective help techniques with support, provision,

guidance, and teaching, where the person's requirements

are related to decision-making, behaviour control,

acquisition of knowledge and strategies, through learning

behaviours, becoming a self-care agent. As for the

person's and family's help needs, they were related to

decision-making, behaviour control and the acquisition of

knowledge and development of competences, where

training for the management of the disease of the

intervenients was stimulated. Since, Orem15 sees self-care

as a skill that can be trained and thus improve the health

status of the person, group, or community.

With the implementation of the community

intervention, it was possible to promote the training of

the participants, the HE sessions were a fundamental

strategy to promote the self-care of the person and

family, favouring the identification of peers, sharing of

knowledge, experiences, and the acquisition of

knowledge. The evaluation, as a stage of the

methodology, indicated the success of the intervention

through process, activity, and result indicators, allowing

the identification of effective health gains. There was an

increase in knowledge and changes in self-care

behaviours, however, there is a discrepancy between

knowledge and its consistent operationalization in

everyday life, which we intend to reduce with the

implementation of the HT nursing consultation,

promoting the effectiveness of teaching moments,

commitment to the process of change, ability to self-

care and health literacy. Such as, home visitation, which,

as we have seen, was a very successful strategy, as an

assistance tool, based on the care plan for training

related to disease management, enabling the

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Quantitative Original Article

educational process, on-site training and family

interaction, the family is the first social unit where the

individual is inserted and has a key role in maintaining

and encouraging the management of chronic illness.

The promotion of healthy behaviours and lifestyles

cannot be decontextualized from the socioeconomic

and political environment where the person and family

are inserted, thus highlighting the importance of the

intervention of the SNCN47, given the proximity to the

community, it identifies health problems, having a role

primordial in the support and monitoring of the

community, through its specific interventions that lead

to the improvement of the provision of care, with the

implementation of projects that respond to the

identified needs.

Thus, ensuring the continuity of this project, the results

obtained were presented to the FHU multidisciplinary

team, the pedagogical material developed was given to the

nursing team, enabling the continuity of its application.

During the project, the nursing consultation, based on the

best practices guide that compiles all the national norms

and policies regarding the management of the disease and

the training processes at home, revealed an added value

for the results obtained, all the material that allows

implementation and operationalization, allowing, in

addition to continuity, improvement with the

introduction of new strategies and interventions, which

allow monitoring, counselling, and teaching. And as for

the home visit, the in loco training of the hypertensive

person and family, focusing attention on family

interaction.

Despite the evidence that proves the management of

hypertension through effective non-pharmacological

and/or pharmacological measures, the control rates of

this disease remain low41, constituting one of the greatest

global challenges, highlighting the relevance of the study

developed, since, the health education process, the

established partnerships and the involvement of the

multidisciplinary team made it possible to increase the

knowledge of both the professionals where it was possible

to validate the relevance of the implemented strategies

and activities, and the participants in terms of health

literacy and skills development for disease management.

That said, we reinforce the need to continue research in

this area, with the implementation of intervention

projects in the community, promoting the training of the

person and family for the management of chronic illness,

identifying the strategies that promote training for the

management of chronic illness and of measures capable

of increasing it by reducing the costs for the person,

family, and society. In future studies, we deem it pertinent

to reach more participants, especially those less

frequenting health services.

Authors’ contributions

SF: Study conception and design; Data collection; Data

analysis and interpretation; Statistical analysis; Manuscript

writing.

MB: Data analysis and interpretation; Critical revision of

the manuscript.

ES: Conception and design of the study; Data analysis and

interpretation; Statistical analysis; Critical revision of the

manuscript.

Conflicts of interests

No conflict of interest declared by the authors.

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| 73

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DOI: 10.56732/pensarenf.v27i1.262

Quantitative Original Article

How to cite this article: Cunha F, Pinto MR, Vieira M. Self-care capacity of Portuguese elderly people living

at home. Pensar Enf [Internet]. 2023

Aug; 27(1)76-81

. Available from:

https://doi.org/10.56732/pensarenf.v27i1.262

Self-care capacity of Portuguese elderly people

living at home

Abstract

Introduction

This article presents an analysis of the Self-Care Capacity of elderly people

living at home, identifying variables that interfere with it. Aging is a stage of life

in which health needs undergo continuous changes resulting from disease

situations and the aging process, therefore, the implementation of adequate and

effective support for the ability to take care of oneself will contribute to the

promotion of health and well-being.

Objective

To identify variables that interfere with the Self-Care Capacity of elderly people living at

home.

Method

This is a non-experimental, cross-sectional, quantitative descriptive and correlational study,

involving 400 participants who met the inclusion criteria. Assessment of self-care capacity

using the Exercise of Self-Care Agency – ESCA.

Results

Based on the multivariate analysis of variance, the existence of statistically significant

differences was identified in some domains of Self-Care Capacity according to age,

education and self-perception of the elderly person's health status. Overall, positive

correlations were found between age and the domain Initiative and responsibility (3.6%)

and between education and the domain Knowledge and information seeking (5.2%) and

negative correlations between age and the domain Knowledge and information seeking

(3.7%). We also found that elderly people who perceived themselves as unable to take care

of themselves showed lower scores in the Knowledge and information seeking domain

than those who perceived themselves as able to take care of themselves, both when

self-perceived as healthy or as having a pathology (difference in mean scores of -.38 and

-.53, respectively, p<.05).

Conclusion

In view of these data, and given that ageing is a stage of multiple challenges in self-care,

we suggest that nurses should consider multiple strategies for elderly people to access,

understand, interpret and integrate the content of the information that allows them to

take care of themselves.

Keywords

Self-care; Nursing Care; Aging; Elderly People.

Fátima Cunha1

orcid.org/0000-0001-7847-7739

Maria Rosário Pinto2

orcid.org/0000-0001-6786-6069

Margarida Vieira3

orcid.org/0000-0002-9439-2804

1Life Quality Research Center (CIEQV)|

Interdisciplinary Research Center in Health (CIIS);

Higher School of Health – Polytechnic Institute of

Santarém, Santarém, Portugal.

2 Health Sciences Research Unit: Nursing (UICISA-

E)|Nursing Research, Innovation and Development

Center in Lisbon (CIDNUR); Nursing School of

Lisbon, Lisbon, Portugal.

3 Interdisciplinary Research Center in Health (CIIS),

Health Sciences Institute (ICS) - Portuguese Catholic

University, Porto, Portugal.

Corresponding author:

Fátima Cunha

E-mail: fatima.cunha@essaude.ipsantarem.pt

Received: 16.02.2023

Accepted: 03.05.2023

74 | Cunha, F.

Quantitative Original Article

Introduction

In the 21st century, the trend towards population ageing

is notorious, with longevity being one of humanity's

greatest achievements.1 The United Nations2 identifies

the elderly as the age group with the highest growth in

the last 72 years, representing 13.9% of the global

population. The same Body estimates that the world

population aged 60 years or more should double by 2050

and more than triple by 2100, rising from 962 million in

2017 to 3.1 billion in 2100. In Portugal, the aging index

in 2020 would be 167%, with the percentage of people

over 65 being the fourth highest in the European

Union.3

At this stage of life, health needs undergo continuous

changes due to the aging process and/or pathology

situations, interfering or potentially interfering with the

ability of elderly people to take care of themselves, in their

capacity for self-care, a potentiality that is an integral part

of the human being.

According to Orem's Theory,4 self-care is associated

with the performance or practice of activities that

individuals perform for their own benefit to maintain life,

health and well-being, the potential to engage in actions

aimed at caring for themselves, in a close relationship

with the person's autonomy. As the author mentions, in

self-care, the focus is placed on the human power

activated and evidenced by the person when it searches,

judges, make decisions and produce self-care operations.4

The way in which each person performs self-care

activities leads to different levels of self-care ability/deficit

and, consequently, the ability to develop health-

promoting behaviours and healthy ageing.

Thus, this is an issue which has already been studied in

different contexts, with several studies showing

statistically significant associations between self-care

ability, health promotion behaviours and well-being in

the elderly.5,6,7,8 The relevance of the dimension of

self-care in a health context is also highlighted by the

increasing number of studies providing instruments to

assess the self-care ability of elderly people,9,10 allowing

to objectify their needs associated with the diversity of

events that occur

throughout the course of life, and not only as a direct

result of chronological age,11 and contribute to the

development of interventions that respond to the

individuality of the person's life.

In this line of thought, the most recent world report on

ageing and health presents a social approach to address

this issue,11 highlighting that advanced age does not imply

dependence and that, although most elderly people

coexist with multiple comorbidities, the diversity of their

capacities and needs is not random.

Similarly, Orem's Nursing Self-Care Deficit Theory4

identifies basic conditioning factors that influence self-

care and transcend age (gender, developmental stage,

standard of living, environmental factors, resource

availability and adequacy). However, the available

scientific evidence identifies a small number of studies

reporting the influence of variables such as gender5,12 and

education.5

Thus, the interest in analysing the elderly person's ability

to take care of themselves, contributing to the

maintenance of their health, and identifying how the

socio-demographic variables interfere with the ability for

self-care emerges.

Considering this perspective, in line with the proposal

to recommend a focus on population ageing that

enhances the transformation of health systems in order

to replace curative models by preventive ones, focusing

on the needs of elderly people,11 it is essential to identify

the variables that interfere with elderly people's self-care

skills in order to implement adequate and effective

support for the development of these skills.

Objective

To identify variables that interfere with the Self-Care

Capacity of elderly people living at home.

Method

This is a non-experimental, cross-sectional, quantitative

descriptive and correlational study, with a favourable

opinion from the Ethics Committee of the Regional

Health Administration of Lisbon and Tagus Valley

(Proc.086/CES/INV/2018), developed ensuring the

ethical and legal dimensions underlying studies of this

nature. Sample composed of 400 elderly people residing

in home care settings, recruited in day care centres (6

settings) and nursing consultations (6 Personalised

Health Care Units and 8 Family Health Units), through a

convenience sampling. Data were collected in paper

format and the researcher was present throughout the

process to ensure compliance with the sampling criteria,

namely the cognitive ability to understand the questions,

informed consent and clarification of language included

in the questionnaire and/or reading it, in participants who

could not read or had decreased visual acuity. To

determine the self-perception of health status, the

elderly person could answer considering three levels: a)

Unable to take care of itself, needs help from others; b)

Able to take care of itself despite the pathology and c)

Healthy, able to take care of itself.

The assessment of the self-care ability was performed

through the application of Kearney and Fleischer's13

Exercise of Self-Care Agency – ESCA, revised by Riesch

and Hauck14 and translated, culturally adapted and

validated for the Portuguese population by the authors

of this article, during which a reliability study was

conducted through the analysis of internal consistency

Pensar Enfermagem / v.27 n.01 / agosto 2023 | 75

DOI: 10.56732/pensarenf.v27i1.262

Artigo

using Cronbach's Alpha coefficient and construct validity

through exploratory factor analysis in a sample of 625

elderly people living at home. The resulting instrument

is composed of 29 items (6 less than the original scale),

distributed by 4 domains conceptually congruent with the

original authors and with psychometric characteristics

suitable for use in clinical or research contexts (global

scale α= .871; subscales: Self-concept α= .705, Initiative

and Responsibility α= .843, Knowledge and information

seeking α= .755 and Passivity α= .646).

Data analysis was performed using the IBM SPSS

Statistics Base, version 27.0. Descriptive statistics

(measures of central tendency and measures of

dispersion) were used to characterise the sample. For the

multivariate analysis of variance, the assumptions of

independence of observations and homogeneity of

variance/covariance were duly checked. We used Pillai's

Trace due to its robustness to modest violations of

normality and Wilks' Lambda whenever homogeneity was

verified, which is in line with Marôco's

recommendations.15

Results

As regards the sample's characteristics, the sample was

mostly composed of elderly females (68.5%), aged

between 65 and 97 years old (M = 75.52 years old; SD =

7.16). Regarding education, the majority had primary

education (61.3%), followed by those who had attended

or concluded Secondary Education (27.3%). With less

representation, those who had higher education (7.2%)

and those who never attended school (4.3%). Most

elderly people reported being able to perform their usual

self-care activities despite the pathology (55%), 33.5%

reported perceiving themselves as healthy and only

11.5% reported a self-perception of inability to perform

usual self-care activities, requiring the help of others.

As results of this study, it was found that gender does

not interfere with Self-Care Capacity, since the data

from the multivariate analysis of variance revealed no

statistically significant differences [Wilks´ Lambda =

.988, F (4, 395) = 1.23, p = .297, ηp2 = .012, (1-β) =

.386]. Univariate tests also failed to identify any

statistically significant differences.

With regard to age, Pearson's correlation coefficient analysis

identified a positive correlation of low magnitude with

the dimension Initiative and responsibility (r = .191, p<

.01), and a negative correlation, also of low magnitude,

between age and Knowledge and information seeking

(r = .193, p< .01) (see Table 1). It was also identified

that the greater the age of the elderly person, the greater

the Initiative and Responsibility and the lower the

Knowledge and search for information.

Table 1 - Pearson's correlation coefficients between participants' age and the ESCA measures

Age of participants

Pearson correlation coefficient (r)

ESCA (global scale)

.036

Initiative and responsibility

.191**

Self-concept

-.005

Knowledge and information seeking

-.193**

Passivity (inverted)

.031

*p < .05 **p < .01

With regard to the influence of the level of education, the

multivariate analysis of variance showed an influence of

the level of education on self-care ability, since a

statistically significant overall effect was observed [Pillai

Trace= .150, F(12, 1185)= 5.18, p< .001, ηp2= .050, (1-β)>

.999].This effect is due to the existence of differences at

the level of the dimensions Knowledge and

information seeking

(magnitude corresponding

ηp2=

5.2%),

Self-concept

(ηp2= 2.6%) and Initiative and

responsibility (ηp2= 2.0%)(see Table 2).

76 | Cunha, F.

Quantitative Original Article

Table 2 - Mean scores and standard according to the deviations of the ESCA participants' education level: Univariate tests

(F), magnitude of experimental effect (r;p2 ) and power of investigation (1-β)

Education level

Did not attend

school

(n= 17)

Primary

education (n=

245)

Secondary

Education

(n= 109)

Higher

education

(n= 29)

Total

(N= 400)

M DP M DP M DP M DP M DP

(3, 396)

1-β

ESCA (global)

3.14

.56

3.20

.45

3.20

.50

3.12

.40

3.19

.46

Initiative and responsibility

3.50

.56

3.36

.56

3.25

.59

3.13

.51

3.32

.57

2.76*

.020

.666

Self-concept

3.49

.65

3.63

.37

3.56

.42

3.41

.40

3.59

.40

3.46*

.026

.774

Knowledge and

information seeking

2.33 1.23 2.84 .89 3.14 .69 3.21 .49 2.93 .86 7.20** .052 .983

Passivity (inverted)

2.58

.93

2.50

.81

2.58

.98

2.52

.71

2.52

.86

.25

.002

.098

*p < .05 **p < .01

The Games-Howell tests indicated statistically significant

differences in Self-concept, exclusively in the mean scores

between elderly people with Primary Education and those

with Higher Education (mean score difference of .22, p<

.05). In terms of Knowledge and information seeking,

statistically significant differences were found between

elderly people who did not attend school or have Primary

Education and those with Higher Education (difference in

mean scores of .88 and .36, respectively, p<.05), as well

as between participants with Primary and Secondary

Education (difference of -.30, p<.01). In addition to these

aspects, we found that elderly people who did not attend

school had low levels of Knowledge and information

seeking (M=2.33; SD=1.23). We also identified a

progressive increase in the values obtained with

increasing education level (primary education M= 2.84;

SD=.89; secondary education M=3.14; SD=0.69 and

higher education M=3.21; SD=0.49) (see Table 2).

Regarding the influence of Self-perception of health status

on Self-Care Capacity, the results of the multivariate

analysis revealed a statistically significant overall effect, with

a magnitude for the multivariate test in the order of 6.5%

[Pillai trace = .130, F(8, 790)= 6.84, p< .001, ηp2= .065, (1-

β)>.999].

The Games-Howell tests allowed identifying higher scores

at the Self-concept level in healthy elderly people,

compared to those who perceived themselves as unable

to take care of themselves (mean score difference of .25,

p<.05). Elderly people who perceived themselves as able

to take care of themselves despite their pathology also

showed higher scores compared to those who perceived

themselves as unable to take care of themselves, needing

support from others (mean score difference of .31, p<.01).

With regard to the Knowledge and information search

factor, elderly people whose self-perception is of inability

to care for themselves, showed lower scores than those

who perceive themselves as able to care for themselves

despite the pathology and those who perceive themselves

as healthy (difference in mean scores of -.38 and -.53,

respectively, p<.05).

In the Passivity (inverted) dimension, elderly people self-

perceived as healthy indicated greater activity compared to

those who perceived themselves as unable to take care of

themselves and to those who said they perceived

themselves as able to take care of themselves despite

pathology (difference in mean scores of .56 and .23,

respectively, p< .05) (see table 3).

Table 3 - Mean scores and standard deviations of the ESCA as a function of the variable Self-perception of health

status: univariate tests (F), magnitude of the experimental effect (ηp2) and power of the investigation (1-β)

Self-perception of health status

Unable to look after

themselves, need help

from others

(n = 46)

Ability to take care of

oneself despite the

pathology

(n = 220)

Healthy, able to

care for itself

(n = 134)

Total

(N = 400)

M DP M DP M DP M DP

(2, 397)

1-β

ESCA (global)

2.95

.44

3.21

.44

3.25

.49

3.19

.46

Initiative and responsibility

3.22

.59

3.35

.55

3.32

.60

3.32

.57

1.02

.005

.228

Self-concept

3.34

.53

3.65

.34

3.58

.42

3.59

.40

11.63***

.055

.994

Knowledge and

information seeking

2.54 .88 2.92 .86 3.07 .80 2.93 .86 6.78** .033 .918

Passivity (inverted)

2.16

.70

2.49

.85

2.71

.87

2.52

.86

8.00**

.039

.955

*p < .05 **p < .01

Pensar Enfermagem / v.27 n.01 / agosto 2023 | 77

DOI: 10.56732/pensarenf.v27i1.262

Artigo

Discussion

When identifying variables that interfere with the Self-

Care Capacity of elderly people living at home, we found

no statistically significant gender differences, which is in

line with the results identified in Turkish elderly people5

and Chinese elderly people.12

In relation to age, Initiative and responsibility tends to

increase with age, whereas the opposite is true for

Knowledge and information search. These results may be

related to the intentionality assigned by the elderly person

to search for information, since, according to Orem,4,16

concern for oneself, motivation and hierarchy of values

are key aspects to engage in self-care actions. On the

other hand, since perception, memory and learning skills

are considered to be essential for self-care actions,16 the

biological losses which become progressive with age may

be the basis for lower levels in the Knowledge and

information search domain at older ages.

We also identify an influence of the education level in the

domains Self-concept, Initiative and Responsibility, as well

as in the Knowledge and Information-seeking domain.

Overall, we found that a progressive increase in education

level is associated with an increase in the level of

Knowledge and information seeking. These results are

in line with the findings of other studies which reveal: a

low level of education accompanies an insufficient

knowledge about the pathology and treatment12,17 and a

lower capacity to engage in self-care actions.5

Although it is important to mobilize the dimension of

skills development throughout life, in reality, elderly

people with low education may have greater difficulty in

accessing information related to their health and health

care, as well as, less ability to understand and manage

information that allows them to make decisions related to

their health. Although a vast amount of information may

be available to the public from different formats and

sources of information, many people may have

difficulty interpreting and applying it, which may

contribute to greater complexity when putting good

health practices in place, despite the information made

available.18 Another factor that may be associated to this

problem is the low degree of health literacy of the

elderly population in Portugal, which may condition the

ability to obtain and apply relevant health

information19,20,24 or the management of pathology

situations.20,21,24

When this situation is associated with the self-perception

of inability to care for oneself, lower levels of self-

concept are found, which may be related to the impact of

dependence on the person's identity. Some authors state

that certain pathology situations in which the person

loses control over its own routines cause profound

changes in self-concept.22,23

In view of these results, which are relevant for

understanding care planning strategies and are aligned

with the guidelines of the Orem Mode,l4,16 as well as the

reasoning structure proposed by the author, we suggest

the development of interventions that allow for a follow-

up leading to the integration of information in the

person's self-care, by mobilizing the guidance inherent to

the support and education system for self-care proposed

by the author.3,16

Conclusions

As nurses, we should consider multiple strategies so

that people are able to access, understand, interpret

and integrate the content of the information that allows

them to take care of themselves, given that, in elderly

people, with lower levels of education and with the

perception of being unable to take care of themselves,

lower scores were found in the Knowledge and

information search domain.

In situations of disability, the promotion of self-concept

also emerges as one of the relevant dimensions for self-

care capacity. So this should be a dimension to be

included in care planning.

Considering that this study only includes elderly people

living at home, further studies including hospitalisation

settings of different types are suggested. An analysis of

other variables based on the basic conditioning factors

set out by Dorothea Orem4 in her Nursing Self-Care

Deficit Theory would contribute to a broader

understanding of the issue.

Authors’ contributions

FC: Study conception and design; Data collection; Data

analysis and interpretation; Statistical analysis; Manuscript

writing.

MRP: Collaboration in statistical analysis; Writing of the

manuscript.

MV: Conception and design of the study; Data analysis and

interpretation.

Conflicts of interest

The Authors declares that there is no conflict of interest’.

Funding

Financing: The English translation of this work was

financed by national funds, through FCT – Foundation for

Science and Technology, I.P., under the project nº

UID/CED/04748/2020 (CIEQV).

References

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Louis: Mosby; 2001. 385.

5. Yanardağ MZ, Özer Ö, Özmen S. Investigating Self-

Care Agency and Well-Being of Elderly People. Soc

Work Public Health [internet]. 2021 May 19;36(4):496-

508. doi: 10.1080/19371918.2021.1915908.

6. Du M, Kong H, Ran L, Ran Y, Bai L, Du Y, Guan H,

Dong Y, Zhao Y. Associations among health-

promoting lifestyle, self-care agency and health-related

quality of life in Bai older adults with hypertension in

Yunnan China. BMC Geriatr. 2022 Dec 7:22(1):942.

doi: 10.1186/s12877-022-03608-0

7. Liu Y, Xue L, Xue H, Hou P. Health literacy, self-care

agency, health status and social support among elderly

Chinese nursing home residents. Health Education

Journal [Internet]. 2018. 77(3): 303-311. Available

from: https://doi.org/10.1177/0017896917739777

8. Tanimura C, Matsumoto H, Yoshimura J, Tokushima

Y, Yamamoto Y, Fujihara Y, Miyoshi M, Hagino H. A

Path Model Analysis of the Causal Relationship

between Self-care Agency and Healthy Behavior in

Community-dwelling Older People from the GAINA

Study. Yonago Acta Med. 2019 Mar 28:62(1):137-145.

doi: 10.33160/yam.2019.03.019

9. Alhambra-Borrás T, Durá-Ferrandis E, Garcés-Ferrer

J, Sánchez-García J. The Appraisal of Self-Care Agency

Scale - Revised (ASA-R): Adaptation and Validation in

a Sample of Spanish Older Adults. Span J Psychol. 2017

Oct 23:20: E48. doi: 10.1017/sjp.2017.52

10. Guo L, Zauszniewski JA, Ding X, Zhang L, Gao H,

Guo Q, Liu K. The Appraisal of Self-Care Agency

Scale-Revised (ASAS-R): Reliability and Validity

Among Older Chinese People. West J Nurs Res. 2017

Nov 39(11):1459-1476. doi:

10.1177/0193945916672821

11. OMS (2015). Relatório mundial de envelhecimento e

saúde. Resumo, OMS

12. Hu J, Gruber KJ, Liu H, Zhao H, Garcia AA. Diabetes

knowledge among older adults with diabetes in Beijing,

China. J Clin Nurs [internet]. 2013 Jan;22(1-2):51-60.

doi: 10.1111/j.1365-2702.2012.04273.

13. Kearney BY, Fleischer BJ. Development of an

instrument to measure exercise of self-care agency. Res

Nurs Health [internet]. 1979 Mar;2(1):25-34. doi:

10.1002/nur.4770020105.

14. Riesch SK, Hauck MR. The exercise of self-care agency:

an analysis of construct and discriminant validity. Res

Nurs Health [internet]. 1988 Aug;11(4):245-55. doi:

10.1002/nur.4770110406

15. Marôco, J. Análise de equações estruturais:

Fundamentos teóricos, msoftware e aplicações. Pêro

Pinheiro: ReportNumber; 2014. 1013.

16. Taylor S, Renpenning K. Self-care science, nursing

theory, and evidence-based practice. Springer

publishing company. New York; 2011. 256.

17. Borba AK, Arruda IK, Marques AP, Leal MC, Diniz

AD. Knowledge and attitude about diabetes self-care of

older adults in primary health care. Cien Saude Colet

[internet]. 2019 Jan;24(1):125-136. doi: 10.1590/1413-

81232018241.35052016

18. Carvalho C, Santos P, Pereira J. Literacia em saúde.

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Politécnico do Porto. 2020. 23.

19. Serrão C, Veiga S, Ribeiro G. Literacia em saúde: um

desafio na e para a terceira idade. Projeto de literacia em

saúde. Portugal: Tipografia Lessa; 2014. 77.

20. Luyckx K, Rassart J, Aujoulat I, Goubert L, Weets I.

Self-esteem and illness self-concept in emerging adults

with Type 1 diabetes: Long-term associations with

problem areas in diabetes. J Health Psychol

[internet].2016 Apr;21(4):540-9, doi:

10.1177/1359105314531467.

21. Jacobs RJ, Ownby RL, Acevedo A, Waldrop-Valverde

D. A qualitative study examining health literacy and

chronic illness self-management in Hispanic and non-

Hispanic older adults. J Multidiscip Healthc [internet].

2017 Apr [cited 2022 Feb 19]; 20:10:167-177. Available

from: https://doi.org/10.2147/JMDH.S135370

22. Medina, D. Literacia em Saúde: Um estudo sobre a

população idosa portuguesa. [dissertation on the

internet]. Lisboa (Portugal): Faculdade de Ciências

Humanas e Sociais da Universidade Fernando Pessoa;

2019 [cited 2023 jan 23]. 70 p. Available

from: http://hdl.handle.net/10284/7456

23. Townsend, A., Wyke, S., Hunt, K. Self-managing and

Managing Self: Practical and Moral Dilemmas in

Accounts of Living with Chronic Illness, Chronic Illn.

2006 Sep;2(3):185-94. doi:

10.1177/17423953060020031301.

24. Arriaga MT, Santos B, Silva A, Mata F, Chaves N,

Freitas G. Plano de Ação para a literacia em saúde 2019-

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Saúde; 2018. 26.

| 79

Pensar Enfermagem / v.27 n.01 / August 2023

DOI: 10.56732/pensarenf.v27i1.269

Theoretical Article

How to cite this article: Bianconi ALM, Marcon SS, Malaquias TSM, Haddad MCFL. Social skills of primary

care nurses and the communicative action of Jürgen Habermas. Pensar Enf [Internet]. 2023 A

ug; 27(1)79-83

Available from:

https://doi.org/10.56732/pensarenf.v27i1.269

Social skills of primary care nurses and the

communicative action of Jürgen Habermas

Abstract

Objective

Promote a reflection on social skills in the work of primary care nurses from the perspective

of Habermas’ communicative action.

Method

This is a reflection article that proposes a discussion about social skills in the work of

primary care nurses, based on Habermas’ theory of communicative action.

Development

Social skills refer to the behaviors in the individual’s repertoire to deal with the demands

and social situations that occur in everyday life. In the work process, the nurse, being the

team manager, must develop their potential to expand the skills relevant to the management

of care, especially in terms of effective communication.

Conclusion

The research concluded that the theory of communicative action of Jurgen Habermas

contributes to the managerial practice of nurses and supports a positive social performance

since, by submitting their attitudes to a communicative action, nurses will be in search of

greater interaction with their team, patients, family and other professionals who constitute

the care networks.

Keywords:

Primary Care; Communication; Nursing; Philosophy in Nursing; Interpersonal Relations.

Aline Loiola Moura Bianconi1

orcid.org/0000-0002-1470-2164

Sonia Silva Marcon2

orcid.org/0000-0002-6607-362X

Tatiana da Silva Melo Malaquias3

orcid.org/0000-0001-5541-441X

Maria do Carmo Fernandez Lourenço Haddad4

orcid.org/0000-0001-7564-8563

1Nurse. PhD in Nursing. Graduate Program in

Nursing, State University of Londrina, Londrina,

Brazil.

2Nurse. Doctor in Philosophy. Department of

Nursing, State University of Maringá, Maringá, Brazil.

3Nurse. PhD in Nursing. Department of Nursing, State

University of the Midwest, Guarapuava, Brazil.

4Nurse. PhD in Nursing. Department of Nursing, State

University of Londrina, Londrina, Brazil.

Corresponding author:

Tatiana da Silva Melo Malaquias

E-mail: tatieangel@yahoo.com.br

Received: 30.03.2023

Accepted: 04.05.2023

80 | Bianconi, A.

Theoretical Article

Introduction

Primary Health Care (PHC) is the set of individual, family,

and collective health actions that include promotion,

prevention, protection, diagnosis, treatment, rehabilitation,

harm reduction, palliative care, and health surveillance,

conducted through integrated care practices and qualified

management, developed by a multidisciplinary team for the

population in a defined territory, over which the teams

assume health responsibility.1,2

The PHC actions are based on four pillars: first contact

care, continuity of care, comprehensive care, and

coordination of care. It is necessary to carry out

management compatible with the needs of the population

to achieve these objectives, following the principles and

guidelines of the Unified Health System (SUS), and have

trained professionals to lead the teams.1,2

In this perspective, nurses represent the principal actor in

health actions, as they have assumed leadership positions in

current scenarios that can define the quality of care

provided. The work of nurses in Brazilian PHC has been

configured as a tool for changes in health care practices in

the SUS, providing a new care model that is not centered

on biologicism but on the integrality of care, intervention

against risk factors, disease prevention, and promotion of

health and quality of life.1,2

Authors affirm that the work of nurses in PHC is based on

two dimensions: a) production of care and management of

the therapeutic process, and b) management activities of

the health service and the nursing team. Thus, the nurse, as

manager of the nursing team, in addition to articulating the

activities of several other professionals in the health team,

must develop the potential to expand the skills relevant to

the management of the work process, especially in effective

communication, interpersonal relationships, and

development of a positive climate for the exercise of

leadership.3

Thus, in this scenario, the nurse’s performance involves

several dimensions of clinical practice, such as care,

assistance, teaching, research, and management,

incorporating health promotion and disease prevention

actions. It is necessary to be a professional who constantly

seeks to develop their social and interpersonal skills to

achieve the objectives of this type of care.3

Social skills (SS) encompass classes of behaviors valued in

a given culture, with a high probability of positive results

for the individual, his group, and community that can

contribute to socially competent performance in

interpersonal tasks. Such skills are divided into self-

monitoring, communication, civility, coping: rights and

citizenship, empathy, SS of work and SS of expression of

positive feeling.4, 5

This repertoire of behaviors can be born with the person,

be acquired throughout their life, through training

programs, or by experience. In this way, it is possible that a

socially incompetent person can competently perform a

particular task.6

Considering that interpersonal relationships and SS need

vigorous and non-reductionist treatment, and considering

the nurse’s work process, recognized as a social practice

that promotes the construction of complex group

relationships, this study will use Habermas’ theory of

communicative action for the development of this

reflection.7, 8

Thus, the objective is to promote reflection on social skills

in the work of primary care nurses from the perspective of

Habermas’ communicative action. Such review is

significant since it will contribute to the (re)construction of

efficient communicative practices and, thus, can make this

space of action more effective in caring for people, families,

and communities.

Method

This is a reflection article that proposes a discussion about

social skills in the work of primary care nurses, based on

Habermas’ theory of communicative action,8 considering

that the work of nurses is recognized as a social practice

that promotes the construction of group relationships of a

complex and non-reductionist nature.

Development

Jürgen Habermas’ Theory of Communication Action

Jürgen Habermas, a German philosopher and sociologist

born in 1929, is one of the most important philosophers

and sociologists of the twentieth century and is considered

one of the last representatives of the Frankfurt School of

social theory and philosophy. His whole his work highlights

three fundamental ideas: the first lies in the construction of

a theory of communicative action; the second supports the

existence of a public sphere in which citizens, free from

political domination, could expose ideas and discuss them;

the third idea defends that the natural sciences follow an

objective logic.9

Habermas argues that societies are complex and deficient

in social integration. Consequently, they constitute

potential spaces of conflict, hinder studies on moral values,

and harm the freedom of individuals. Considering the

aforementioned, “human beings, in general, are often

searching for their own interests, mirrored through

calculations of advantages and arbitrary decisions. One acts

on the other and not with the other, i.e., a rational action

directed to merely strategic ends.”10 (p177)

The theory of communicative action seeks a

communicative concept of reason and a society in which

the community actively participates in both individual and

collective decisions, consciously and responsibly. This

theory understands the individual as a participatory being

who, before acting, evaluates the possible consequences,

considering the rules, norms, values, and laws. Therefore,

he should not act mechanically.10-11

The present theory concerns two types of actions:

instrumental action and communicative action. The

societies that have places where instrumental action is

prevalent are identified by the philosopher as a systemic

Pensar Enfermagem / v.27 n.01 / August 2023 | 81

DOI: 10.56732/pensarenf.v27i1.269

Theoretical Article

world, and those in which the prevalence is of

communicative action are named as lifeworld.12

The systemic world would be that in which instrumental

and reparative rationality predominates. Therefore, the

critique of instrumental reason is related to an expansion of

the concept of rationality. Thus, Habermas develops the

concept of communicative rationality, which is

fundamental to the world of work or communicative

reason, where the main objective is the search for one’s

own interests.9

The lifeworld would be the private sphere of family and

friendships and the public sphere is where the subjects can

understand the other spheres of the social system through

the communicative process and communicative action,

which in turn brings better decisions for individuals. The

world of communicative action is the lived world or the

lifeworld.10

Chart 1 represents aspects that underlie the mutual

understanding and the interface between the lifeworld and

acting based on norms, i.e., the systemic world.13

Chart 1 - Theoretical pillars of the Theory of Communicative Action,

Londrina/PR, Brazil, 2021

THEORETICAL

PILLARS

Guidelines for mutual understanding

versus guidance for success

Mutual understanding as a mechanism

for coordinating actions

Action situation and speech situation

The background of the lifeworld

Process of mutual understanding

between the world and the lifeworld

References to the world and validity

claims

World perspective

Source: Adapted from Habermas (1989)

Therefore, communication must be intelligible, considering

the universe of the receiver when elaborating a speech since

the main objective of communication is understanding. The

emphasis given by Habermas is the paradigm that dialogical

reason is the result of the process of intersubjective learning

because the subjects, historically situated, through speech,

establish an interpersonal relationship in which one can try

to understand that the contemporary world is governed by

communicative reason.13

Interfaces between social skills in the performance of nurses

in primary care and communicative action

The activities of nurses in PHC promote actions between

the health system and people through the production of

care, the management of the nursing team, and management

staff. “Care management is related to the private activities

of the nurse concerning planning, executing, coordinating,

supervising and evaluating nursing care, considering the

ethical-legal point of view”.14(p1)

Nurses, in daily practice, by exercising a leadership position,

need to provide their team with moments of integration that

favor the thinking, reflection, feeling, and action of all those

involved in activities related to patient care and community.

Given this, this professional must be skilled in

communication and relationship processes, as they are

inherent to their managerial performance. To this end, he

must have an accurate repertoire of social skills.15

In this scenario, the nurses’ daily practice permeates the

mechanistic and reductionist aspects. Therefore, an

appropriate communication process is essential, considering

the diversity of actions under their responsibility, besides

articulating the activities between their team and other

professionals, health sectors, and care networks as a whole,

with the common intention of serving the community.

Thus, it is necessary to implement effective communication

in the daily work of nursing, especially by nurses as leaders

of this team.15,16

According to Habermas, it is essential to provoke constant

and renewing learning “since consensus exists until the

moment of dissent,” when something or situations can be

renegotiated. He explains that “consensus does not occur

when the lifeworld is very different” because, in situations

where cultures are quite different, there may not be the

motivation of one or both parties to investigate, to search

for understanding through communication. Therefore,

communication is not restricted to what is said or written

since it turns into action, and this is how individuals interact

with each other “in an argumentative back and forth”. 15,16

The ideas mentioned above permeate the universe of SS

since skill classes encompass behaviors related to the

individual’s repertoire for a positive performance in society.

Therefore, SS are interdependent in the social daily life of

man, and communication is a skill that passes between all

others and is strictly intertwined with communicative action.

When an action requires the mutual understanding and

cooperation of peers for a common goal, there must be an

understanding of the individual contexts and positioning of

the recipient in front of the speech act.16

Through language, nurses can reduce weaknesses and

enhance common strengths in the relationships between the

health team members. The understanding of the relevance

and the capacity of communicative action make the

individualities, which form the heterogeneity of the team

and the particularities of their entities, stop being pieces that

harm communication and become contributions of the

consensus built by the participation of all.17

It is fundamental to have self-monitoring as a principle to

put into practice the behavior repertoire of the SS and

obtain a positive social performance for the individual to be

considered socially skilled and, for this, self-knowledge is

indispensable. Thus, according to Habermas, it is essential

to believe that people who behave irrationally are mistaken

in their self-knowledge, and people who manage to have a

reflective attitude about their subjectivity, through self-

reflection, can achieve their dreams and goals through their

own experience.16-18

82 | Bianconi, A.

Theoretical Article

However, it is essential to transcend the communicative

process characteristic of the lifeworld to enter the process

of reflective and critical rationality. In the managerial

language of the universe of attributions of socially skilled

nurses, it is crucial to use reflective rationality for an ideal

scenario reading and solution of critical issues in the care

process. It is necessary, through the argumentative

procedure, that the group seeks consensus based on

principles that seek to ensure its validity. Thus, truth does

not come from isolated reflection but is exercised through

dialogue guided by rules established by the group members

in an ideal dialogical situation. The excellent speech situation

consists in avoiding coercion and providing conditions for

all participants in the speech to exercise speech acts. For

Habermas, the criterion of truth does not consist in the

correspondence of the statement with the facts but in the

discursive consensus. 16-18

Some weaknesses found in the communication process can

affect the communicative action of nurses and their team,

such as inadequate data records, extremely fast information

dissemination speed (fake or not), generating complications

of various proportions and making it difficult to control the

communicative process.19

Thus, it is necessary for nurses, as team managers, to

ascertain whether strategic action is only guiding their

actions, so as not to face a lack of understanding. Thus, to

subsidize their actions, they must search for elements of the

social sciences and become aware of the importance of

communication in the process of care and management, so

that it can transform nurse-client, nurse-team and team-

client relationships. When nurses act according to their

social skills and based on communicative action, they can

provide understanding and great social transformations.15, 18

Effective communication is essential for teamwork. It is

necessary to establish effective communication between all

those involved, that is, managers, workers, patients, and

families to provide quality and more humane health care.17

Thus, it is essential to focus more on the communicative

action of the nurse’s work process to allow a better

performance and interpersonal relationship, with the

autonomy of its agents and mutual construction of usual

goals among the health team as a whole. In this way, the

members of the process recognize themselves as actors of a

social world amid cultural divergences, knowledge, and

subjectivities to provide an effective relationship.17

Finally, the study emphasizes that, in the Habermasian

theory, a communicative action is an act that aims at mutual

understanding through help between those involved,

corresponding to an effective strategy for other actions, and

it develops from an annular process in which the actor is the

initiator and product of the process.20

Conclusion

Jurgen Habermas’ Theory of Communicative Action

contributes to the nurse’s managerial practice and supports

a positive social performance since, by submitting their

attitudes to a communicative action, the nurse will be in

search of closer interaction with their team, patients/clients,

family and other professionals who constitute the care

networks. Health professionals, in general, need to be

committed to developing their social and communication

skills in order to promote more humanization and reduce

mechanistic acts.

Whereas Habermas suggests that interaction is

indispensable for social organization, everyone must

understand that the objective will always be the search for

consensus without duress. Nurses’ actions with their team

aim to promote the health and well-being of all, including

internal and external clients. Communicative action should

be a concern of all professionals.

Furthermore, the conceptions about communicative action,

in the habermasian view, can be implemented by managers

and nursing staff in their daily work, as they stimulate the

involvement of all, considering the particularities of each

one to build the whole, overcoming adversity and

maximizing the capabilities.

Finally, this reflection contributed so that nursing, especially

nurses who act as health service managers, can be instigated

to seek means capable of transforming strategic and

instrumental actions into a communicative action.

A limitation of the study was that few studies use Habermas’

philosophy of communicative action for a better basis of

effective communication in nursing. The article identified

the need for new studies that address this theme in greater

depth, which is one of the basic pillars of nursing care.

Authors’ contributions

ALMB: Conceção e desenho do estudo; Recolha de dados;

Análise e interpretação dos dados; Redação do manuscrito;

Revisão crítica do manuscrito.

SSM: Conceção e desenho do estudo; Análise e

interpretação dos dados; Redação do manuscrito; Revisão

crítica do manuscrito.

TSMM: Conceção e desenho do estudo; Análise e

interpretação dos dados; Redação do manuscrito; Revisão

crítica do manuscrito.

MCFLH: Conceção e desenho do estudo; Recolha de dados;

Análise e interpretação dos dados; Redação do manuscrito;

Revisão crítica do manuscrito.

Conflicts of interests

No conflict of interest declared by the authors.

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validade. Rio de Janeiro: Tempo Brasileiro, 2003.

8. Habermas J. Teoria de la Accion Comunicativa, Tomo I,

Madrid: Taurus Ediciones, 1999.

9. Koury MGP. Jürgen Habermas e a teoria do agir

comunicativo: breves notas introdutórias. RBSE [Internet]

2015 [citado 2021 Set 15];14(40):27-35. Disponível:

https://www.researchgate.net/publication/290444963_Ju

rgen_Habermas_e_a_teoria_do_agir_comunicativo_Breve

s_notas_introdutorias

10. Bustamante AP. Aplicação do agir comunicativo de

Habermas na mediação comunitária: o dialógo como

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https://www.candidomendes.edu.br/wp-

content/uploads/2019/05/RevistaFDCM-Ucam18.pdf

11. Sales, LMM. Justiça e mediação de conflitos. Belo

Horizonte: Del Rey, 2004.

12. Andrade LFS, Alcantara VC, Pereira JR. Comunicação

que constitui e transforma os sujeitos: agir comunicativo

em Jürgen Habermas, ação dialógica em Paulo Freire e os

estudos rganizacionais. Cad. EBAPE.BR [Internet] 2019

[citado 2021 Set 21]; 17(1);12-24. Disponível em:

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13. Habermas J. Consciência moral e agir comunicativo.

Rio de Janeiro: Tempo Brasileiro; 1989.

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Ruoff AB, Piccoli T. Configuration of the management of

nursing care in Brazil: a documentary analysis. Enferm.

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https://doi.org/10.21675/2357707X.2019.v10.n1.1926.

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de enfermeiros acerca das habilidades sociais na gerência do

cuidado sob a perspectiva da complexidade. Rev. esc.

enferm. USP [Internet] 2018 [citado 2021 Nov 11];

52:e03391. Disponível em: Disponível em:

https://doi.org/10.1590/S1980-220X2017048103391.

16. Alves KYA, Bezerril MS, Salvador PTCO, Feijão AR,

Santos VEP. Comunicação efetiva em Enfermagem à luz

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http://www.dx.doi.org/10.5935/1415-2762.20180078

17. Araújo MPS, Medeiros SM, Quental LLC.

Relacionamento interpessoal da equipe de enfermagem:

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[citado 2021 nov4];24(5):e7657. Disponível em:

https://doi.org/10.12957/reuerj.2016.7657

18. Larocca LM, Mazza VA. Habermas e Paulo Freire:

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Edições 70; 1996.

| 84

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DOI: 10.56732/pensarenf.v27i1.218

Theoretical Article

How to cite this article: Santos J. Advanced Nursing: remembering the past, appreciating the present and

perspecting the future

. Pensar Enf [Internet]. 2023 Aug; 27(1)84-91

. Available from:

https://doi.org/10.56732/pensarenf.v27i1.218

Advanced Nursing: remembering the past,

appreciating the present and perspecting the future

Abstract

Introduction

This article arises from the analysis of care practice as a Nurse, in a sense of continuous

improvement. Thus, by understanding the professional history, the paradigms of the

profession and the positioning of Nursing in terms of society in today's world, it is possible

to envision possible paths for the profession.

Objective

This article aims to reflect on the historical evolution of Nursing in Portugal and to envision

the future of Portuguese Nursing in the light of international influences.

Development

The historical perspective and the implications in Nursing care practice, Person/Client-

Centred Care and the individualisation of the intervention and, finally, Advanced Nursing

and Advanced Practice Nursing were addressed. Analysing the historical perspective of

Nursing over the centuries, from its abnegated period, through the romantic era, medicine

and the technicist phase, we understand some current practices and doubts regarding the

perspective of the future. The development of knowledge and practice in Nursing should

go through the recognition and advancement of the core competencies of the discipline.

Conclusion

An approximation between scientific production and care practice is essential for the

development of Nursing. Facilitating this process is the development of the Nursing

specialties as a master's degree course, promoting not only different practices, but also the

critical look and thinking of professionals. In this process, the existence of other sciences

– health, social and human sciences, among others – that will promote the development of

the Nursing body should not be relegated to second place, but it is also crucial to

disseminate scientific production in Nursing, in order to give visibility to the science and

practice of the discipline.

Keywords

Nursing; History of Nursing; Person-centered Nursing; Advanced Practice Nursing.

João Santos1

orcid.org/0000-0003-0070-2451

1 Master. Rehabilitation Medicine Center of Alcoitão,

Lisbon, Portugal.

Corresponding author:

João Santos

E-mail: joao.santos.rn@gmail.com

Received: 02.12.2022

Accepted: 10.05.2023

Pensar Enfermagem / v.27 n.01 / August 2023 | 85

DOI: 10.56732/pensarenf.v27i1.218

Theoretical Article

Introduction

Care has existed since life came into existence: it is

necessary to 'care' for life so that it can remain. 1 ( p.117)

Nursing cannot be detached in its focus or in its history

from people. Looking back at the past, one can state that

Nursing and its development as an art and science is

intricately entwined with the care of Women. Women have

always played the role of carers within the family,

promoting the harmonious development of children,

ensuring the hygiene and maintenance of the

home/household, helping in the collection and preparation

of food, to name but a few. These responsibilities

embedded in the role of the Woman-Mother are still

present to this day, despite the significant social changes

that family and its representation are currently undergoing.

Historically, Women have had a less active social role until

the twentieth century – the century of wars. Despite this

social erasure, Women have not ceased to be a cornerstone

of society over the centuries, not only for their critical role

in the family – the structural and fundamental unit of

society – but also for their involvement in social, solidarity

and merciful causes. 2,3

Furthermore, the historical relationship between Nursing

and religion cannot be denied. In the case of Portugal,

Christianity, with its altruistic and fraternal basis, is

associated with caring for others. Looking at the works of

mercy spread by the Catholic Church, the seven corporal

works of mercy (to feed the hungry, to give drink to the

thirsty, to clothe the naked, to shelter the homeless, to visit

the sick, to visit the imprisoned and to bury the dead) and

the seven spiritual works of mercy (to instruct the ignorant,

to counsel the doubtful, to admonish the sinners, to bear

wrongs patiently, to forgive offences, to comfort the

afflicted, to pray for the living and the dead) are highlighted.

4 From the description of the works of mercy, it can be

stated that the fundamental values or principles of Nursing

are embedded in these religious principles. This intimate

relationship between Nursing and Religion was further

strengthened during the Middle Ages due to epidemics, war

and famine, which worsened social and health conditions.

In this regard, religion emerged as a safe haven for medieval

society, providing the necessary healthcare through the

intervention of religious orders. 5

Despite this role of religion in society, the expression of

this care in most cases was done by Women, involved in

the action of the religious orders of the time. Hence, one

can see the triad Nursing – Women – Religion, whose

pinnacle is assumed in Florence Nightingale – the mother

of modern Nursing. In the nineteenth century, during the

Crimean war, the lack of assistance conditions to the

military led Nightingale to reformulate and restructure the

existing conditions – hygiene and cleanliness, food,

ventilation, lighting, organization and separation of circuits

and spaces, among other things. This laboratory served as

a catapult to her contribution in modern healthcare. 5–7

This reflection arises following the analysis of everyday

practice as a Nurse, in a sense of continuous improvement.

Thus, by understanding the professional history, the

paradigms of the profession and the positioning of Nursing

in terms of society in today's world, it is possible to envision

possible paths for the profession. This article aims to reflect

on the historical evolution of Nursing in Portugal and to

envision the future of Portuguese Nursing in the light of

international influences. For its development, the abridged

historical path will be discussed: from Nightingale to the

biomedical model and the Nursing models – implications

for Nursing care practice; Person/Client-Centred Care and

the individualisation of the intervention; and Advanced

Nursing and Advanced Practice Nursing.

Formatted for holistic care since the beginning of training,

creating a distance from the biomedical model, focused on

signs and symptoms, professional practice was guided by

the individualisation of care. In this regard and in that of

competencies development, it became evident to rethink

professional practices to advance the Nursing care

provided in the transition phase from generalist nurse to

nurse specialist.

Abridged Historical Path: From Nightingale to the

Nursing Models – Implications for Nursing Care

Practice

The World Health Organization (WHO) defines health as

"not merely the absence of illness but a state of complete

physical, mental and social well-being"8. This mid twentieth

century definition of health attempts to encompass more

than the physical realm of health, i.e., the absence of illness,

originating in classical, mechanistic physics. This dualistic

view between health and illness can be at the root of the

biomedical model, focused on signs and symptoms -

objective, measurable aspects - and on the healing process.

The biomedical model guided Nursing training because of

the intimate professional and formative relationships

between the Doctor and the Nurse. According to this

model, Nursing care focuses on routines or tasks that meet

the physical needs of the patient. Following this line of

thought, the image of Nursing emerged as being

subordinate to Medicine, with the aim of curing or

controlling the illness, while the doctor was the main

person responsible for health care. 9

Returning to the influence of religion – Christianity – in

Nursing, the biomedical model came to add the values of

romanticism and pragmatism to Nursing. Embedded since

its genesis in asceticism, Nursing has always had a focus on

donations and total dedication to others. With scientific

evolution and the consolidation of the biomedical model,

subjugation to the doctor and the technicality of the

profession also became predominant in Nursing. With

these underlying conceptions, it can be stated that Nursing

86 | Santos, J.

Theoretical Article

lies between the care for the body, influenced by Medicine,

and the care for the spirit or soul, the result of religious

weight. 9

With Nightingale's revolution, Nursing added Science to its

Art1. The development of Nursing's own body of

knowledge can be said to have been initiated by

Nightingale's work.10 In the multidisciplinary context of

health, the influence that the various disciplines have

amongst each other cannot be ignored. In constant

development, Nursing's own body of knowledge, a

requirement for the definition of the profession and

discipline, undergoes mutations that develop Nursing

practice10,11 For Florence Nightingale, Nursing focuses on

caring for the person, rather than on the Nursing process,

the therapeutic relationship, or the Nurse. In this way,

Nursing shapes itself to meet the needs of each person. The

Nurse and the person being cared for are influenced by

environmental factors that should be addressed in order to

modify them so as to provide better care to the person

according to their needs. It was with Nightingale's work

that training in Nursing was developed, because according

to her perspective Nurses should have specific training and

instruction for their work, allowing for the improvement of

the care provided. 10,11

During the twentieth century, several conceptual models of

Nursing were developed. Pepin et al.10 classify Nursing

theory into five schools of thought:

 School of Needs: focused on situations of

dependence, Nursing supplements or

complements the person to meet fundamental

needs, promoting independence (Roper,

Henderson);

 School of Interaction: focused on the

interpersonal and therapeutic process between

the Nurse, the person and the context, in order to

facilitate the processes of transition and to

maximise health functionality (Peplau, King);

 School of Results: focused on the adaptation of

the person to the environment (internal or

external), promoting appropriate adaptive

responses (Roy, Neuman);

 School of the Unitary Human Being: focused on

the well-being of the person, maximising

individual health potential in every moment and

place (Newman, Rogers);

 School of Caring: focused on the

phenomenological process of sharing between the

Nurse and the person being cared for (Leinninger,

Watson).

1 For Hesbeen (43), to care is an art, a therapeutic art, (...) that will

enable you to help someone in their unique situation p.37).

Theoretical models in Nursing serve as a lens to look at and

understand the reality of Nursing care. In its conception,

there are four metaparadigm concepts that are the basis for

the theoretical model – Nursing, Person, Health and

Environment. Resulting from the influence of the current

paradigms, the various schools of thought in Nursing gave

body to the Science produced. 10

In the current Nursing care provided, it may be stated that

the holistic paradigm and holistic Nursing are guiding the

professional reality. Thus, Nursing encompasses the care of

individuals, families, groups and communities, ill or healthy and in all

environments. [...] It includes health promotion, illness prevention and

care for ill people, people with disabilities and people in the process of

dying. Protection, promotion of a safe environment, research,

participation in the formulation of health policies and in the

management of patients and health systems and education are also

important roles of Nursing. 12 In this regard, the person is much

more than a source of signs and symptoms, they have a

prior history and experience (culture, religion, spirituality,

relationships, among others) that influence the way of

being and interacting with others (in this case with the

Nurse). It is during this interaction that the Nurse

reinforces the existence and singularity of the person in the

illness process. 13,14

Person/Client-Centred Care and the Individualisation

of the Intervention

The Person-Centred Nursing Model reflects the ideals of

humanistic care, in which there is a moral component and

Nursing practice is based on a therapeutic intentionality,

which translates into relationships built upon effective

interpersonal relationships. 15 According to the model,

Nursing is an approach to the practice established through

the formation and promotion of therapeutic relationships,

based on respect for people; the individual right to self-

determination; and mutual respect and understanding,

through cultures of empowerment that promote

humanistic development15. According to McCormack &

McCance 15, Person-Centred Nursing is focused on 3 major

aspects:

 Nurses' competencies (professional

competencies, personal competencies,

commitment to work and personal traits);

 Organisational aspects (time, combination of

competencies and the role of the nurse);

 Client attributes.

In addition to the focus on technical competence, it is

extremely important to develop humanistic and holistic

care practices to embrace all forms of knowledge and action

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DOI: 10.56732/pensarenf.v27i1.218

Theoretical Article

to promote choice and partnership in care decision-making.

The middle-range theory of Person-Centred Nursing is

characterised by four fundamental aspects15,16:

 Pre-Requirements: these focus on the attributes

of the nurse and include being professionally

competent; having developed interpersonal skills,

self-knowledge; being committed to the job; being

able to demonstrate clarity of beliefs and values,

and knowing oneself;

 Care Environment: focuses on the context in

which care is delivered and includes an

appropriate mix of skills; systems that facilitate

shared decision-making; effective relationships

between staff members; a responsible sharing of

power; physical environment; supportive

organisational systems; potential for innovation

and risk-taking;

 Person-Centred Processes: focus on delivering

care through activities that operationalise person-

centred Nursing and include working with the

client's beliefs and values; sharing decision-

making; authentic engagement; empathetic

presence; holistic care delivery;

 Expected Outcomes: include a positive

experience with the care provided; involvement in

care/care giving; feeling of well-being; the

existence of a healthy culture.

Person-Centred Care develops from the communication

between the person and the professional. Therefore,

nurses' interventions should focus on listening to people's

narratives about their experience of falling ill, the personal

meaning they attach to the illness and the social restrictions

caused by suffering and symptoms. By understanding these

experiences, nurses can strengthen the person's

involvement in care decision-making. 17

When effective communication is established, interest is

shown in listening and the professional is available to

understand the person's perspective, this leads to greater

trust in the person, a caring environment is created in which

there is greater sharing of their feelings and greater

engagement in the decision-making process. 17

The person-centred model emphasises the meaningful

interaction between the nurse and the person. In this

aspect, McCormack & McCance15, when describing the

person-centred processes, describe the Engagement2 as a

mirror of the quality of the nurse-person relationship.

According to the ability to jointly solve problems and/or

work together, the authors describe three levels: full

2 Free translation of the term Engagement described by

McCormack & McCance15).

engagement, partial disengagement, and complete

disengagement.

In the 2017 review, McCormack & McCance16 rename the

process to Engagement Authentically3. In its description,

Engagement Authentically is considered as the Nurse's

connection with the patient/person and family (or

significant others), determined by the person's knowledge,

clarity of beliefs and values, self-knowledge and

professional experience. This interaction between nurse

and person is unique, both for the individuals that comprise

it and for the moment in which it is established. Despite

this change, the authors maintain the levels of engagement

described previously.

By analysing the care practice, the presence of the

biomedical model is observed in the Nursing records.

Although the theoretical Nursing model adapted by the

institution is that of Roper, Logan and Tierney about

Activities of Daily Living, the Nursing records produced in

most situations give response/visibility to the tasks

performed, to symptomatic control, to continuous

improvement programmes and/or to the needs or

obligations of the directive/management component. In

terms of organisation and structure, the records are based

on the satisfaction of needs/activities of daily living.

However, the record on functionality is noted.

It is considered that the Nursing records document the care

provided, making it visible. Despite their importance, they

are sidelined in more complex or work overload situations.

18–20

Indeed, the above is in line with what is described by

Kärkkäinen et al. 21 Records often seem to reflect the tasks

performed by nurses, rather than personalised care. In

addition, there is reference to the way records are made,

which is recommended by the institutions, and which may

hinder the production of records focused on individualised

care. Hence, the content of Nursing records does not meet

comprehensive and person-centred criteria.

Furthermore, Kärkkäinen et al.21 consider that the visibility

of individualised care in Nursing records should take into

account the experience, needs and wishes of the people

being cared for and that care plans should be drawn up with

the person/patient and family. Although this cooperation

between nurse/person should exist, the documentation of

care should not be to exclude the technical knowledge of

the professional, the technology, the practice of care or the

ethical principles.

3 Free translation of the term Engagement Authentically

described by McCormack & McCance16).

88 | Santos, J.

Theoretical Article

Advanced Nursing and Advanced Practice Nursing in

the Portuguese reality

Nursing in Portugal underwent a great development in the

last century. This explosion occurred not only in its

effective care practice, associated with the evolution of

medical knowledge and the demands of the people cared

for regarding the care provided, but also in its training,

through the integration of Nursing as a higher education

course (baccalaureate and later undergraduate degree) and

the development of master's and doctoral degrees in

Nursing Science. 22

With the evolution in care practice, there was a need to

regulate the profession - the Regulamento do Exercício

Profissional dos Enfermeiros (Regulation for the

Professional Exercise of Nurses) was developed and the

Ordem dos Enfermeiros (Portuguese Order of Nurses) was

created. In the Regulamento do Exercício Profissional dos

Enfermeiros23, the nurse develops two types of

interventions: on the one hand, autonomous interventions,

initiated by the nurse's prescription and, on the other hand,

interdependent interventions, initiated by the prescription

of another health professional.

In some countries, due to difficulties in medical assistance,

the technical competencies of some nurses were developed,

making them legally qualified for diagnosis, therapeutic

prescription and prescription of complementary diagnostic

tests and their interpretation. This increase in nurses'

medical competencies led to the creation of the Nurse

Practitioner4. 22,24,25

According to the International Council of Nurses (ICN),

Nurse Practitioners "are generalist nurses who, after additional

education (master's degree for entry level), are autonomous clinicians".

26 In the national reality, this advance in Nursing practice

may be compared to the development of interdependent

competencies of nurses. Gardner et al.27 and Silva22 also

compared the Nurse Practitioner in their conception as a

hybrid model between doctor and nurse, based on the

biomedical model.

In light of this advancement in Nursing practice, it became

urgent to define the path to where it was intended to

develop the body, practice and science of Nursing. The

Canadian Nurses Association defined Advanced Practice

nurses as:

An umbrella term for registered Nurses and Nurse Practitioners who

integrate graduate nursing educational preparation with in-depth,

specialized clinical nursing knowledge and expertise in complex

4 The decision was made to keep the original/international

designation, as there is no equivalent in Portuguese

practice.

decision-making to meet the health needs of individuals, families,

groups, communities and populations. 28

These advanced practice nurses have the following

competencies: comprehensive/extended in the provision

of direct care; health systems optimisation;

education/training; research; leadership; and consultation

and collaboration. 28

More recently, the ICN has defined Advanced Practice

Nursing as:

Enhanced and expanded healthcare services and interventions

provided by nurses who, in an advanced capacity, influence clinical

outcomes and provide direct healthcare services to individuals, families

and communities26.

In the same document, the ICN defines the Clinical Nurse

Specialist5 as a professional with advanced knowledge in

Nursing, beyond the knowledge developed in generalist or

specialty training, in making complex decisions in a specific

context, promoting quality and positively impacting the

health services. 26 This professional designation arises in

response to the development of the context of specialised

care practice, requiring further education beyond the

Nursing Speciality. Comparing with the Portuguese reality,

the acquisition of a Nursing Specialty by a Master's degree

– reference level for the attribution of the title of Clinical

Nurse Specialist26 – may be considered a path towards the

development, or rather, the advancement of the Portuguese

Nursing practice.

In this line of thought and in the national reality, Silva22

described Advanced Nursing as a development of

competencies in the area of caring and decision-making.

Thus, the development of masters and doctoral degrees in

Nursing has deepened the knowledge of human responses

to the care provided, but also developed nurses'

competencies for the effective delivery of care. 29 Within

the scope of nurse specialists, the Portuguese Order of

Nurses defined four domains of common competencies:

Professional, ethical and legal responsibility; Continuous

quality improvement; Care management; and Development

of professional learning. 30

With regard to the development of Nursing competencies,

Benner31 conceptualised it in five levels or phases, whereby

the phases of Proficient and Expert may be framed with

the competencies of nurse specialists. In her description,

the proficient nurse apprehends and understands care

situations as part of a life process, making decisions based

on the holistic model and learning and modelling

practice/decision-making with experience. Regarding the

5 The decision was made to keep the original/international

designation, as there is no equivalent in Portuguese

practice.

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DOI: 10.56732/pensarenf.v27i1.218

Theoretical Article

expert nurse, they support their action based on intuition,

thus having a high performance. 31

Comparing with the Strong Model of Advanced Practice,

27,32 it can be stated that the common competencies of the

nurse specialist meet the five areas of advanced practice,

with the provision of specialty care6 corresponding to

Integral Direct Care7 and the underlying processes of

advanced practice.

Conclusion

The principles of quality and safety in health are underlying

Lei de Bases de Saúde33 (Basic Healthcare Law). Nursing,

as a health science, seeks to answer to Quality and Safety in

health. 25

The WHO understands Quality in Health as a high degree

of professional excellence, with minimum risks, positive

health outcomes for patients and efficient use of available

resources. 34 Additionally, quality in health is considered as

a relationship between professionals and

patients/populations that aims at the best desirable health

outcomes according to current knowledge. 35

On the other hand, health Safety is more than "the

prevention of harm to patients". 35 For Mitchell36, patient

safety means the absence of preventable injuries and the

reduction of the risk of unnecessary harm associated with

healthcare to an acceptable minimum, based on current

knowledge, available resources and the context where the

care was provided, compared to the risk of non-treatment

or other treatments. This way, quality and safety in health

appear interconnected. This way, quality and safety in

health appear interconnected.

In the sense of professional excellence and in the

development of its body of knowledge as a science, it is

essential for Nursing8 to focus on the increase of

competencies for person-centred performance – the

primary target of Nursing care. 22 Looking at the historical

evolution of Nursing and the current paradigm, it makes

sense to understand the middle-range theory of Person-

Centred Care. In the specific context of Rehabilitation, the

person-centred approach becomes a practice of excellence:

to approach the person in a holistic way, in order to solve

their daily difficulties, considering them as an expert in their

living experience; and emphasising the participation and

empowerment, respecting the person beyond the

impairment or ilness. 37

6 In accordance with the various Regulations of the

Specific Competencies of Nurse Specialists.

7 Free translation of Direct comprehensive care used in Mick &

Ackerman's model32.

In the reality of care giving, the main obstacles to person-

centred care are in line with those described by Moore et

al.38, namely traditional practices and structures, time

constraints and the documentation and organisation of the

institution. Furthermore, the lack of documentation

supporting person-centred care and the low visibility of the

actual care provided in the records emphasise the

difficulties in implementing this type of care.

The multidisciplinary intervention in health, not only of

several medical specialties, but also of several health

professionals, turns health care into a sea of interventions,

in which the person may sink. Therefore, by applying the

holistic paradigm to its practice, Nursing may be considered

a safe foundation, or rather a safe haven, from which,

alongside the person, strategies, processes, among others,

are developed to improve their health and reduce the

impact of their illness situation on their life path. 39

Despite the needs felt in other countries to include medical

competencies in nurses40, in Portugal the average number

of nurses is below the OECD41 average. In this sense, it

may be stated that, given the difficulty in providing Nursing

care to the population, the acquisition of extraprofessional

skills will not make sense. However, the literature highlights

that nurses with added competencies – Nurse Practitioners

– add value to the vision and provision of Nursing care to

the population. 24,27

In summary, analysing the historical perspective of Nursing

over the centuries, from its abnegated period, through the

romantic era9, medicine and the technicist phase, we

understand some current practices and doubts regarding

the perspective of the future. 9 Thus, the development of

knowledge and practice in Nursing should go through the

recognition and advancement of the core competencies of

the discipline. 22 An approximation between scientific

production – from the academic domain - and care practice

– from the community and hospital domain - is

fundamental for the development of Nursing. Facilitating

this process is the development of the Nursing specialty as

a master's degree course, promoting not only different

practices, but also the critical look and thinking of

professionals.29 In this process, the existence of other

sciences – health, social and human sciences, among others

– that will promote the development of the Nursing body

should not be relegated to second place, but it is also crucial

to disseminate scientific production in Nursing, in order to

give visibility to the science and practice of the discipline.

22,40,42

8 Nursing, that is, nurses in the delivery of care, teachers in

Nursing Schools and Nursing researchers.

9 Term used by Pearson & Vaughan9

90 | Santos, J.

Theoretical Article

Authors’ contributions

JS: Drafting the manuscript; Critical revision of the

manuscript.

Conflict of interests

The author declares no conflict of interest.

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Review article

How to cite this article: Dutra IN, Ferreira MHB. Internet as a source of information and health literacy in

pregnancy: a scoping review

. Pensar Enf [Internet]. 2023 Aug; 27(1):92-99

. Available from:

https://doi.org/10.56732/pensarenf.v27i1.257

Internet as a source of information and health

literacy in pregnancy: a scoping review

Introduction

The social reconfigurations of the last few decades have changed the role of women in

society, moving them away from the extended family and reducing their time to build

supportive relationships, essential factors of informal support during the transition to

parenthood. This new reality led to the emergence of alternative informal sources of

support, namely the internet, currently constituting one of the main sources of health

information for pregnant women. However, it is not enough to have access to online

information to know how to apply in health decisions, it is also necessary to evaluate,

understand and interpret it, that is, it is necessary to have health literacy.

Objective

Map the existing literature on the relationship between the internet as a source of

information and the level of health literacy of pregnant women.

Methods

Population: pregnant women; concept: health literacy; context: internet. Primary and

secondary sources of qualitative and quantitative research were considered, as well as

unpublished literature, as master's dissertations.

Research in three stages according to the JBI methodology, using the databases Medline,

CINHAL, Web of Science, Google Scholar and Open Access Scientific Repository of

Portugal. Considered articles published since 2015, in Portuguese, English, Spanish and

French. Data extraction and analysis performed in a table elaborated according to the JBI

methodology, 2020.

Results

13 articles were included. Pregnant women with a higher level of health literacy conduct

more online health research, resorting more to formal sources and discussing the

information accessed with health professionals. Pregnant women with a lower level of

health literacy have more difficulties in understanding, evaluating and applying the

information accessed online, resorting more to sources such as blogs and social networks.

Conclusion

The level of health literacy of pregnant women has a decisive influence on the use of the

internet as a source of health information, being positively related to greater frequency of

use, recurrence to formal sources and discussion of the information accessed with health

professionals. In contrast, a lower level of health literacy is associated with greater difficulty

in evaluating and understanding the information accessed, requiring support from health

professionals. The level of health literacy of pregnant women should be considered for a

personalized recommendation of valid and reliable online information.

Keywords

Pregnant Women; Internet; Health Literacy.

Irina Neves Dutra1

orcid.org/0000-0001-6922-2769

Maria Helena Bértolo Ferreira2

orcid.org/0000-0002-6612-2700

1 Degree.

Nursing Research, Innovation and

Development Centre of Lisbon: Lisbon, Portugal

2 Master.

Nursing Research, Innovation and

Development Centre of Lisbon, Lisbon; Nursing

School of Lisbon,

Maternal Health Nursing

Department, Portugal

Corresponding author:

Irina Neves Dutra

E-mail: neves.irina@campus.esel.pt

Received: 30.01.2023

Accepted: 06.06.2023

Pensar Enfermagem / v.27 n.01 / August 2023 | 93

DOI: 10.56732/pensarenf.v27i1.257

Artigo

Introduction

The transition to parenthood is a developmental transition

caused by a major life event 1 that begins before or during

pregnancy, leading the woman to start preparing herself

essentially through the search for information and self-care.

2 There are several factors that contribute and influence the

development of skills for the role of mother, namely social

support, which is an essential source of information,

understanding and emotional support. 3 However, society

has undergone reconfigurations over the last few decades,

with family networks being more distanced and women

playing increasingly significant roles in the labor market,

limiting the time available for the development of

meaningful relationships. 3 This reality has led to around ¾

of pregnant women globally resorting to alternative sources

of information and support, as the internet. 4

The internet, defined by The Oxford English Dictionary 5

as a global and interconnected computer network that

provides a variety of information and means of

communication, is a privileged mean of obtaining health

information, especially for people of reproductive age 6,

becoming preferred over sources of information based in

interpersonal relationships, 7 such as the relationship

between health professionals and clients.

During the transition to parenthood, the main resources of

pregnant women are health professionals, family, friends

and, increasingly, the internet, 8 an information resource that

is growing exponentially, offering information in a fast,

accessible, personalized and anonymous way. 3 However,

the accessibility and availability of online information raises

questions related to its reliability and credibility, and even

with the suitability of the information for the person

searching for it. 7 Despite the existence of abundant health

information online, the one which is based on scientific

evidence, it is not easily accessible to the general public. 9

However, to make informed health decisions on a daily

basis, it is not enough to have the ability to access

information, it is also necessary to have Health Literacy, that

is, the knowledge, motivation and skills to access,

understand, evaluate and apply health information in

different everyday situations. 10 Health literacy is a tool to

empower people, which must be built and improved

throughout the life cycle, 11 helping them to manage their

health, enabling them to use information correctly and thus

obtain gains on a personal and social level, being a means

for social and human development. 9 It involves

psychological factors, such as personal motivation and the

perception of self-efficacy, social and environmental factors,

which influence decision-making and health behaviors,

promoting greater ability to deal with illness, more effective

use of health services and better understanding and control

of life situations. 12

The higher the level of health literacy, the greater the

prevalence of information-seeking behaviors in all available

means, namely the internet. 6 On the other hand, a low level

of health literacy is associated with less competence in

assessing the quality of health information that is accessed,

and it is in people with a lower level of health literacy that

there is a lower incidence of preventive behaviors and a high

rate of use of health services. 9

Regarding the search for online information, people with a

lower level of health literacy tend to be distracted by extra

elements of a website (such as links), to choose the first

answer to their question, not confirming its veracity. They

also have difficulty in identifying the differences between

high and low quality information and tend to give up the

search if do not quickly find the answer to what they are

looking for, disregarding information with complex and

technical words that are not part of their lexicon. 13

Therefore, the role played by health professionals is crucial,

as seeing their traditional relationship being remodeled by

new technologies, 14 they should promote the health literacy

of those they care for, understanding which new sources of

health information are used, mediating its use and taking

advantage of the potential of new communication and

information technologies, such as the internet, to expand

people's access to reliable health information. 10

Midwives have as one of their specific competences the care

of women inserted in the family and community during the

prenatal period, 15 promoting their health and well-being

and individualizing care according to their specificities, as

their level of health literacy. 16 Considering the internet as a

privileged source of information for pregnant women,

midwives should be familiar with the most used online

resources related to pregnancy, as well as direct women to

reliable sites, 16 enabling them to conscious and informed

decision-making throughout pregnancy.

Considering the growing use of the internet as a source of

health information by pregnant women, as well as the

existing asymmetries in the search for online information

between people with a higher and lower level of health

literacy, the objective of this Scoping review is to identify in

the existing literature the relationship between the level of

health literacy of pregnant women and the use of the

internet as a source of health information. To this end, the

following initial question was defined: What is the

relationship between the level of health literacy of pregnant

women and the use of the internet as a source of health

information?

Methods

A review protocol was created, registered on the platform

OSF Registries (https://osf.io/k8hea).

The following keywords were defined: pregnant women;

internet; health literacy.

A preliminary search was carried out in May 9, 2022 in the

systematic reviews database of the Joanna Briggs Institute

(JBI) and the Cochrane Database of Systematic Reviews,

and to date, no scoping reviews have been found on this

topic.

Inclusion criteria

The inclusion criteria were defined according to the

methodology of the JBI. 17 The types of participants were

94 | Dutra, I.

Review Article

pregnant women, the concept of interest, health literacy

and context, the internet as a source of information.

As sources of information, research studies of primary and

secondary sources of qualitative and quantitative research

were used, as well as unpublished literature, as master's

dissertations. The inclusion and exclusion criteria are

systematized in chart 1.

Chart 1 - Inclusion and exclusion criteria

Inclusion criteria Exclusion criteria

Design of the

study

Research studies of primary and secondary sources of qualitative, quantitative

and mixed-methods research were used, as well as unpublished literature, as

master's dissertations

Articles published in English, Portuguese, French and Spanish

Articles published since 2015

Articles published in different languages.

Articles published before 2015

Population Articles with pregnant women as population

Articles with postpartum woman or mothers of small

children as population

Articles with health professionals who care for

pregnant women who use the internet as a source of

information

Concept Articles with the concept of health literacy

Articles about only one of the topics in study and not

both simultaneously

Context Articles about the search of health information online

Search Strategy

The research process aimed to identify published and

unpublished primary and secondary research and it took

place between 9 and 14 June 2022. For unpublished

research, Google Scholar and the Open Access Scientific

Repository of Portugal were used, where the terms

pregnancy, internet and health literacy were searched,

aggregated with the boolean operator AND.

The research strategy was carried out in three stages, as

recommended in the JBI17 methodology.

In the first stage, an initial search was carried out in the two

most relevant databases for the subject under study,

MEDLINE and CINAHL, through the EBSCOhost

platform. In this research, the terms pregnancy, internet

and health literacy were used, some articles were identified,

and the words included in the titles and abstracts, as well as

the indexing terms, were subsequently analysed. In the

second stage, an organized search was carried out in three

separate databases, MEDLINE, CINHAL and Web of

Science, using the set of keywords in natural language and

identified indexed terms. Each concept was researched as

the main one, as it was only intended to identify articles in

which they appeared as the main concept under study.

For each database, the terms indexed for the selected

keywords were identified and, when the existence of terms

with truncation was verified, they were aggregated

according to its relevance. The identified natural and

indexed terms are shown in chart 2.

Chart 2 - Systematization of keywords in Medline and CINHAL databases

Natural term

Indexed term

Medline

Truncation terms

Indexed term

CINHAL

Truncation terms

Population

Pregnant

Pregnant women

Expectant mother

Concept

Health Literacy

Context Internet Internet

Web archives as topic

Internet based

intervention

Internet of things

Internet access

Social media

Internet

Social media

World Wide Web

Gopher

Internet access

Internet connections

Internet protocols

Internet based

intervention

After identifying all relevant natural, indexed and

truncation terms for each keyword, they were aggregated

using the boolean operator OR. In the end, among all the

keywords already aggregated, their association was

performed with the Boolean operator AND. Database

search procedures are provided in Appendix I

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DOI: 10.56732/pensarenf.v27i1.257

Artigo

(MEDLINE), Appendix II (CINHAL) and Appendix III

(Web of Science).

Articles published in English, Portuguese, French and

Spanish were considered. As time limits, evidence

published since 2015 was considered, given that the topic

of using new information technologies as a source of health

information is relatively recent.

In the third stage, the list of references of the selected

articles was analysed, in order to identify any interesting

articles for the subject under study.

Source of evidence screening and selection

The process of evidence screening and selection is outlined

in the following flowchart:

Figure 1 – Flowchart of the scoping review process.

Adapted from: Moher, D; Liberati, A; Tetzlaff, J & Altman,

D. Preferred reporting items for systematic reviews and

meta-analyses: the PRISMA statement. Ann Intern Med.

[Internet]. 2009,151 (4), 264-269. Available from:

https://doi.org/10.1371/journal.pmed.1000097.

The search to identify unpublished literature carried out in

the database of the Open Access Scientific Repository of

Portugal, did not identify any results. In the databases used

after the initial identification of articles through the search

for the defined keywords, the title, abstract and keywords

were read and analysed. Duplicate articles were then

screened, resulting in a total of 29 articles. Subsequently,

the list of references of the identified articles was analysed,

and no article was identified that met all the selection

criteria. The articles to be included in the scoping review

were then selected according to their relevance to the

subject under study, through the analysis of the title and

abstract. In articles whose relevance was not clear by

reading the abstract, an analysis of the full text was

performed.

During the evidence source selection stage, 16 articles were

excluded for not meeting the defined selection criteria; two

articles were excluded because their population was health

professionals who care for pregnant women who use the

internet, and the rest were excluded because they only

presented one concept and not both simultaneously.

Then, both authors, independently, selected thirteen

articles to be included in this scoping review.

Data extraction

The extraction of data from the selected articles was done

through a table, elaborated according to the JBI17

methodology, with the objective of extracting relevant data

from the identified articles, mapping the existing evidence

on the relationship between the use of the internet as a

source of health information and the level of health literacy

of pregnant women. Ethical aspects were preserved

throughout the data extraction process, with all authors

duly referenced and the content of the included articles

presented in a reliable manner.

Results

In order to present the synthesis of the main characteristics

of the included studies, a table was elaborated, presented in

Appendix IV. Considering the existing asymmetries

between different levels of Health Literacy (HL) and the

use of the internet as a source of information 6,9,13, the key

results of the present scoping review were coded into

higher and lower levels of health literacy, and are presented

in the following chart:

96 | Dutra, I.

Review Article

Chart 3 - Coding of the key results of the scoping review

Author Objective

Results

Relationship between Health Literacy (HL) level and internet as a source of

information

Lower level of health

literacy

Higher level of

health literacy

Implications for practice /

for health professionals

Hussey, L.; Frazer, C. &

Kopulos, M. (2016)

Analyse the impact of the

HL level of millennial

pregnant women on health

decision-making during

pregnancy.

Less ability to understand

and apply the information

accessed online;

Require support from health

professionals to understand

and apply the health

information they access

online.

The level of HL must be

assessed with validated

instruments to personalize

the information.

Fredriksen, E.; Harris, J. &

Moland, K. (2016)

Understand how online

discussion forums influence

maternal HL.

Interactions between

pregnant women in online

forums influence their level

of HL, increasing their

knowledge and health skills

and giving guidance in using

the health system.

Sayakhot, P. & Carolan-Olah,

M. (2016)

Investigate how pregnant

women use the internet to

obtain information related to

pregnancy.

Empowerment is needed

through the promotion of

information search skills.

Greater propensity

to search for

information online.

Should warn that the

information available online

does not replace contact with

health professionals.

Guendelman, S.; Broderick,

A.; Mlo, M.; Gemmill, A. &

Lindeman, D. (2017)

Understand the extent of

adoption and use of digital

tools; to identify the main

psychological factors that

motivate the use of

technology among

disadvantaged primiparous

pregnant women.

Less use of digital tools.

Increased number

of online searches

on health

information;

Greater use of

digital tools for

managing health

issues.

Should inquire about online

health information search

behaviours and assess skilss

in using online tools that

require HL;

Should define strategies to

eliminate inequalities between

women with different levels

of digital HL.

Vamos, C.; Merrel, L.;

Detman, L.; Louis, J. & Daley,

E. (2019)

Explore pregnant women's

experiences in accessing,

understanding, evaluating,

communicating and using

health information during

pregnancy.

3 components of HL were assessed:

Comprehension: information in current language;

audio-visual elements and personalized information;

Evaluation: multiple references; credibility of the

source and presence of sponsorships;

Application: conducting prior search online allows

the formulation of questions before the contact with

health professionals and making health decisions on

topics such as nutrition and physical exercise during

pregnancy.

Pregnancy is a privileged

period for promoting HL;

Prenatal health education

interventions should be

developed according to the

level of health literacy,

ensuring their accessibility,

understanding and

applicability.

Arcia, A.; Stonbraker, S. &

Warner, E. (2019)

Understand how

disadvantaged pregnant

women characterize their

digital information needs and

search processes; Identify

the inhibiting and facilitating

factors in this process.

It is a barrier to the correct

interpretation of health

information that is accessed

online;

It is associated with a lower

propensity to search for

information online;

It is associated with the need

for support to access reliable

online information.

Should reference online

formal sources of

information, especially for

women with a lower level of

HL.

Chung, K.; Cho, H.; Kim, Y.;

Jhung, K.; Koo, H. & Park, J.

(2020)

Determine associations

between pregnant women's

medical help-seeking

strategies, changes in medical

decision-making, and use of

online health information

with a focus on the

mediating effect of self-

efficacy on literacy.

Online search for

information in

formal sources;

Greater intention to

discuss with health

professionals about

the information

accessed online.

Šoštaric, M. &, Jokić-Begić, N.

(2020)

Understand the

phenomenon of health

information search online by

pregnant women.

It is associated with greater

difficulty in obtaining

information online.

It is associated with

more online

research;

Increased skills in

assessing the

accuracy of online

information.

Bäckström, C.; Chamoun, S.;

Tejani, S. & Larsson, V. (2021)

Explore parents perceptions

of digital parenting support

Online support tools should be able to be

individualized at different levels of HL;

Must be actively present in

online support tools,

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during pregnancy and the

first 18 months of parenting.

supporting people with

critical levels of HL;

Should enhance critical and

analytical skills, promoting

HL.

Donelle, L.; Hall, J.; Hiebert,

B.; Jackson, K.; Stoyanovich,

E.; LaChance, J. & Facca, D.

(2021)

To understand how digital

technologies contribute to

the experience of transition

to parenthood.

The overwhelming amount of information available

online makes it difficult to understand;

Pregnant women need to raise their HL level to

know how to identify reliable online sources.

Should promote digital HL

skills;

Should know to reference

reliable online sources.

Álvarez-Pérez, Y.; Perestelo-

Pérez, L.; Rivero-Santana, A.;

Torres-Castanõ, A.; Toledo-

Chávarri, A.; Duarte-Díaz, A.;

Mahtani-Chugani, V.;

Marrero-Díaz, M.; Montanari,

A.; Tangerini, S.; González, C.;

Perello, M.; Serrano-Aguilar,

P. (2022)

To determine the influence

of creating online courses on

improving the digital health

literacy of pregnant and

breastfeeding women.

Should promote skills to

assess the quality and

accuracy of information

available online;

Online courses can be a tool

to empower pregnant

women, allowing access to

valid and reliable

information.

Lesser use of online

information sources of

reference and greater use of

sources such as blogs and

social networks.

It is potentiated by

taking online

courses.

Bäckström, C.; Carlén, K.;

Larsson, V.; Mårtensson, L.;

Thorstensson, S.; Berglund,

M.; Larsson, T.; Bouwmeester,

B.; Wilhsson, M.& Larsson,

M. (2022)

To explore the use of digital

information sources by

expecting parents and how

their health during

pregnancy its influenced.

Lower level of HL is related

to individual difficulties in

searching for online

information.

Should consider the level of

HL to provide personalized

support;

Should develop online

information adapted to

different levels of HL.

Lu, Y.; Barret, L.; Lin, R.;

Amith, M.; Tao, C. & He, Z.

(2022)

To identify research gaps in

information needs related to

pregnancy and information

available from different

sources.

Is associated with less online

searches;

Associated with more

difficulties in accessing health

information available online.

The health information

available online should be

formulated for a basic level

of understanding, in order to

be comprehensible to all

levels of HL.

Discussion

This scoping review allowed mapping the existing scientific

evidence on the relationship between the two concepts

under study: internet and health literacy in the defined

population, pregnant women, concluding that the level of

health literacy of pregnant women has a decisive influence

on the use of the internet as a source of information. The

authors state that it is in pregnant women with a lower level

of HL that is verified less use of digital tools to search for

health information, 18, 19, 20 possessing less ability to

understand and apply the information accessed online, as

well as individual difficulties in search for information, 21, 22

requiring support from health professionals. 18, 23 It is also

in pregnant women with a lower level of HL that there is

less use of online formal sources and greater use of sources

such as blogs and social networks. 24

On the other hand, pregnant women with a higher level of

HL, carry out more searches for online health information,

19, 22, 25 having better skills in assessing the accuracy of the

information they access. 22 They tend to resort to formal

online sources and have greater intention of discussion with

health professionals about the health information they have

accessed. 26

Towards the existing asymmetries between pregnant

women with different levels of HL, strategies must be

defined by health professionals to eliminate the inequalities

that emerge in the use of the internet as a source of health

information. 19 In the first instance, they should assess the

level of HL with validated instruments to provide

personalized support 21, 23 and ask questions about online

health information search behaviours of pregnant women

whom they care for. 19 They should promote skills for

evaluating the quality and accuracy of information available

online 21, 24, 27 and be actively present in online support

tools, 21 developing health information in current language

and with audiovisual elements, 18 which is adapted to

different levels of HL. 21

As a limitation of the present scoping review, the location

of most of the included articles emerges, which come from

studies carried out in the United States of America, with a

smaller number of studies carried out in Europe,

emphasizing the lack of studies carried out in Portugal.

Given the relevance and timeliness of the topic, research

on the use of the internet as a source of health information

and the level of health literacy of pregnant Portuguese

women emerges as a need.

Conclusions

The articles included in this scoping review allowed

mapping the existing scientific evidence on the relationship

between the use of the internet as a source of health

information and the level of health literacy of pregnant

women, something that should not be overlooked by health

professionals who provide care for this population. The

level of health literacy of pregnant women has a decisive

influence on the use of the internet as a source of

information, being positively related to greater frequency of

use, recurrence to formal sources and discussion of the

information accessed with health professionals. In contrast,

a lower level of health literacy is associated with less use of

digital tools to search for health information, greater use of

informal online sources and greater difficulty in evaluating

and understanding the information accessed, requiring

support from health professionals. The level of health

literacy of pregnant women should be considered for the

personalized recommendation of valid and reliable online

98 | Dutra, I.

Review Article

information. Considering the relevance of the subject, there

is an urgent need to carry out further research, with the aim

of guiding health professionals to provide care that is

sensitive to the specificities of pregnant women in the 21st

century.

Authors’ contributions

IND: Conception and design of the study; Data

collection; Data analysis and interpretation; Drafting the

manuscript.

MHBF: Critical review of the manuscript.

Conflicts of interest

The authors declare that there is no conflict of interest.

Funding

This research received no specific grant from any funding

agency in the public, commercial, or not-for-profit sectors.

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| 100

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DOI: 10.56732/pensarenf.v27i1.250

Review Article

How to cite this article: Coelho M, Tereso A. Virtual reality as a strategy for labour pain relief: scoping

review protocol

. Pensar Enf [Internet]. 2023 Ago; 27(1):100-105

. Available from:

https://doi.org/10.56732/pensarenf.v27i1.250

Virtual reality as a strategy for labour pain relief:

scoping review protocol

Introduction

During labour, pain can affect the health of the mother and the foetus, and its relief is a

right of the mother and a duty of the professionals. In the promotion of a positive

experience of labour, it is crucial that nurses specialised in maternal and obstetric health give

priority to pain assessment and the use of non-pharmacological methods for pain relief,

providing the necessary resources and empowering parturients to use them. Among said

methods, virtual reality stands out due to its ease of use and for allowing the reduction of

pain levels by diverting attention from the real world, using computers and other devices.

Since it is a new approach that is not yet implemented in delivery rooms in Portugal, it is

important to map the facilitating factors and barriers associated with its use, so that the

dissemination of existing knowledge and its transfer to skilled nursing care during the first

stage of labour can be planned.

Objective

To map the research evidence on the facilitating factors and barriers in the use of VR as a

non-pharmacological strategy for pain relief during labour in hospital settings.

Methods

This protocol follows the guidelines published by the Joanna Briggs Institute. The databases

MEDLINE, CINAHL, Cochrane Database of Systematic Reviews and MedicLatina

through the EBSCOhost platform, the Joanna Briggs Institute EBP Database, through the

Ovid platform are considered for the search and, the grey literature is also included. As

inclusion criteria, qualitative, quantitative and mixed studies that address virtual reality as a

pain relief strategy during labour in hospital settings (based on the mnemonic PCC -

Population, Concept and Context), published in Portuguese, French, Spanish or English

language between 2017 and 2022 are considered. The titles and abstracts of identified

references will be independently reviewed and assessed for eligibility by two reviewers. In

the event of a tie, a third reviewer will be used. Full text studies and data will be extracted

using a form. The data extraction table will show the mapped data in a descriptive way

answering the research questions.

Discussion

The results will allow summarising the barriers and facilitating factors in the use of Virtual

Reality for pain relief during labour and thus contribute to decision making in planning the

dissemination of this strategy to pregnant women and health professionals and its

implementation in delivery rooms.

Systematic Review Record

Open Science Framework : osf.io/4b2sj

Keywords

Virtual Reality; Pain in Labour; Obstetric Nursing; Parturient.

Marta Coelho1

orcid.org/0000-0003-2085-9739

Alexandra Tereso2

orcid.org/0000-0002-4746-3649

1 Master’s student. Nursing School of Lisbon, Lisbon.

Nursing Research, Innovation and Development

Centre of Lisbon (CIDNUR), Lisbon, Portugal.

2 PhD. Nursing School of Lisbon, Lisbon. Nursing

Research, Innovation and Development Centre of

Lisbon (CIDNUR), Lisbon, Portugal.

Corresponding author:

Alexandra Tereso

E-mail: alexandra.tereso@esel.pt

Received: 19.01.2023

Accepted: 25.05.2023

Pensar Enfermagem / v.27 n.01 / August 2023 | 101

DOI: 10.56732/pensarenf.v27i1.250

Review Article

Introduction

Pain during labour is an individual experience.1 The way

pain is experienced by the parturient includes physiological

and psychosocial processes2 that depend on prepartum and

intrapartum factors.3 These include physical, psychological

(fear, anxiety, confidence), prenatal education, parity, the

position adopted by the woman, genetic and clinical factors,

the mother's level of education, socioeconomic and cultural

level, and the model of care during childbirth (e.g. presence

of a caregiver).4 Although pain during labour is a natural and

physiological condition, it can affect the well-being and

health of the woman and the foetus, the woman's emotional

relationship with the new-born, as well as her prospects for

future births.5

National and international guidelines on the positive birth

experience or respected motherhood advocate that pain

relief is crucial to the provision of quality care. The World

Health Organization6 states that pain relief should be based

on scientific evidence and made available in a timely manner,

according to the woman's choices, its culture and its needs.

In this context, non-pharmacological pain relief strategies

that do not entail the risk of adverse effects of

pharmacological strategies such as increased duration of

labour and the need for instrumental deliveries, are

highlighted.1,7 These strategies have the potential to reduce

the side effects of epidural analgesia, increase the rate of

adherence to breastfeeding, increase shared decision-

making and control over labour, facilitate interaction with

professionals, and ultimately increase the satisfaction of the

parturient woman and its family. 8-9

Among the non-pharmacological strategies for pain relief

during childbirth, virtual reality (VR) stands out as a non-

invasive method, presenting several benefits (increased

satisfaction and decreased pain, duration of labour and

anxiety), being effective and easy to use.4,10-11 Musters et al.12

consider that there has been an increase in scientific

evidence that VR is effective in reducing pain during

childbirth, and that its use may contribute to reducing the

use of pharmacological pain control methods and,

concomitantly, the side effects associated with them.

VR is a new technology that uses computers and other

devices, which allows the parturient to experience a sense of

presence in an immersive three-dimensional and interactive

environment, which contributes to reducing the perception

of pain, diverting attention away from the real world.13 This

abstraction and sensory experience can also be used

simultaneously with other techniques, which is an advantage

that should be taken into consideration. 14

Pain perception is (in part) related to the attention paid to

painful stimuli15 and distraction techniques take the

attention away from a noxious stimulus, requiring limited

attention from the user. Although distraction through

watching movies, listening to music, and having non-clinical

conversations has become more common during medical

procedures, VR systems may provide a more effective

alternative. Distraction may be a very promising analgesia

technique that can be used safely and effectively for the

reduction of pain and discomfort during medical

procedures.16 In recent years, several researches have

explored the effectiveness of immersive VR distraction in

reducing pain related to different medical procedures and

also labour. 15

Some of the most recent distraction techniques use

advanced audio-visual technology, which combines visual

and auditory stimuli in two- or three-dimensional videos.

These techniques are called audiovisual VR systems, goggle

systems or simply audio visual distraction and do not use

kinetic stimuli. VR uses sophisticated equipment such as 3-

D monitors (Head Mounted Displays) placed on the head,

which have a large field of view, and motion detection

systems which allow users to interact with the virtual

environment. There is a multiplicity of features and

components that can be added to or removed from the

equipment, which translates into the costs involved for its

use.17

The use of VR as an analgesia technique offers more

immersive images due to occluding headsets that project the

images right in front of the user's eyes and, depending on

the model used, block real-world stimuli (visual, auditory or

both).16 McCaffery and Pasero17 have designated this

phenomenon as sensory shielding. In the latter, the user is

protected from pain by the distraction resulting from

immersion, which is particularly increased in VR through

the use of Head Mounted Displays that direct the focus of

attention to what is happening in the virtual world.16

In the first phase of labour, VR is of particular interest due

to its non-invasive nature, its contribution to pain relief and

the absence of significant side effects.11

In the studies conducted by Baradwan et al.4, Akin et al.1, and

Carus et al.18, the benefits of VR were highlighted as being:

the reduction in the perception of pain in parturients, the

decrease in anxiety levels, the increase in the satisfaction of

women and significant others, the absence of adverse

effects, as well as the decreased risk of complications for the

foetus and postpartum disorders for women. In this context,

it is also important to mention the qualitative study

conducted by Wong et al.19, in which the perceptions of

parturients during the use of virtual reality were analysed and

in which they concluded that women felt calmer and more

relaxed, with decreased levels of anxiety and more focused

on breathing. This study also showed significant

improvements in self-efficacy through the use of VR.

Health professionals, with their knowledge and skills,

remain the most important factor in promoting a labour that

meets women's expectations20, ensuring a safe environment,

designing, implementing and assessing interventions for

pain prevention and control.21-22 During pregnancy and

childbirth, pain relief stands out in the professional practice

of obstetric nurses and is based not only on medical reasons,

but also on human reasons.23

The sharing of knowledge for the innovation of nursing

care, strategies and interventions is essential, as well as the

acquisition of resources and the training of professionals to

provide safe, accessible and effective alternatives24 for the

relief of pain in parturients.25 The implementation of VR in

the first stage of labour requires obtaining information on

the preferences of parturients and how they perceive pain.12

In prenatal care, these aspects can be clarified and the

102 | Tereso, A.

Review Article

development of the birth plan can be a good opportunity to

do so.

Despite its effectiveness in pain relief and the safety that its

application allows,26 VR is still not used in delivery rooms in

Portugal. In this context, it is essential to identify the

facilitating factors and barriers to the dissemination of the

available know-how, in order to promote its dissemination

during pregnancy in childbirth preparation courses and its

accessibility to parturients.

Methods

A search of MEDLINE (EBSCOhost), the Cochrane

Database of Systematic Reviews (EBSCOhost), and the

Joanna Briggs Institute EBP (Ovid) was performed and no

scoping reviews or systematic reviews on the topic were

identified.

Objectives and Research Questions

The aim of this scoping review (ScR) is to map the evidence

on the facilitating factors and barriers in the use of VR as a

non-pharmacological pain relief strategy during labour in

hospital settings.

The research questions are:

What are the barriers to using virtual reality as a pain relief

strategy during labour?

What are the facilitating factors in the use of virtual reality

as a strategy for pain relief during labour?

Following the methodology proposed by JBI, this scoping

protocol is presented according to the guidelines for

systematic review protocols provided by the Preferred

Reporting Items for Systematic review and Meta-Analysis

Protocols (PRISMA-P) checklist (Appendix 1).28 The

planned review will be presented according to the PRISMA

Extension for Scoping Reviews (PRISMA-ScR) Checklist

(Appendix 2).28

This protocol will be conducted to include all studies that

address virtual reality as a non-pharmacological strategy for

pain relief during labour. Ensuring a systematic and

replicable work, the structure of this ScR protocol, will

follow the following steps: define and align the objective

with the questions for the review, develop and align the

inclusion criteria with the objectives/questions; describe the

planned approach for the search, selection, data extraction

and presentation of evidence; search and select the evidence;

extract and analyse the evidence; present the results and

summarise the evidence in relation to the review objective,

reach conclusions and note any implications of the results.29

This protocol has been registered in the Open Science

Framework (registration no. osf.io/4b2sj )

Eligibility Criteria

Participants: this ScR protocol includes studies on the use

of virtual reality for pain relief during labour.

Concept: the phenomenon of interest defined for this ScR

concerns the facilitating factors and barriers to the use of

virtual reality as a non-pharmacological strategy for pain

relief during labour. The identification of these aspects will

make it possible to prevent the impact of barriers and

promote the successful implementation of this strategy in

birth units in Portugal.

Background: hospital (Delivery Rooms).

Types of Studies

This protocol includes primary (quantitative, qualitative and

mixed) or secondary (systematic literature reviews and ScR)

studies and grey literature. Studies published in Portuguese,

French, Spanish and English will be considered, since they

are the languages of the researchers. The timeline

considered will include the last 5 years of publication,

starting in 2017.29

Information sources

To identify potentially relevant documents for the ScR two

types of information sources will be used.

Electronic databases through the EBSCOhost platform:

CINAHL Complete, MEDLINE Complete, MedicLatina

and Cochrane Database of Systematic Reviews, and through

the OVID platform: JBI EBP.

Other documents from sources such as the Open Access

Scientific Repository of Portugal and from organisations

issuing guidelines on health care during childbirth.

Research strategy

The research strategy defined for this ScR will involve three

stages.

An initial search in relevant databases: MEDLINE,

CINAHL. Through this search, the most commonly used

descriptors (natural and indexed language) in the titles and

abstracts of the searched articles and the indexing terms

used to identify the articles related to the facilitating factors

and barriers in the use of virtual reality as a non-

pharmacological strategy for pain relief during labour are

defined.

The natural language search expression to be used in the

MEDLINE database includes truncation and wild cards and

will be: (Parturient OR Pregnan* OR Wom?n in Labo?r)

AND (Virtual Reality OR User-Computer Interface) AND

(Pain Management OR Pain Measuring OR Pain Relief OR

Labo?r Pain) AND (Hospital OR Obstetric Units).

The search expression in indexed language to be used in the

same database will be: (MH "Labour, Obstetric" OR

"Pregnancy") AND (MH "Virtual Reality" OR MH "User-

Computer Interface") AND (MH "Pain Management" OR

MH "Pain Measurement" OR MH "Analgesia, Obstetrical"

OR MH "Labor Pain") AND MH "Hospital Units".

As limiting factors, the date of publication (from 2017 to

2023) and language (English, French, and Portuguese) will

be used.

Secondly, a search will be conducted by adapting the terms

described in the previous section for each of the sources

mentioned. The search strategy will be based on the

mnemonic "PCC" according to the JBI recommendations.

The Participants were the parturient women; the Concept

was virtual reality as a non-pharmacological strategy for pain

relief and the Context was the hospital (delivery rooms).30

The reading of the titles and abstracts by both reviewers

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DOI: 10.56732/pensarenf.v27i1.250

Review Article

independently (using previously established questions) will

allow them to select those that meet the eligibility criteria

and that will be chosen to be read in full.

For refinement, the bibliographic references of all identified

articles and studies will be reviewed to include additional

studies.30

Data mapping process

After the search, all selected studies will be sent to the

Mendeley reference management program and duplicates

will be removed. Subsequently, a detailed assessment of the

studies will be performed, and their selection will be based

on the inclusion criteria and the guiding questions of the

review. Two reviewers independent of each other will be

used for identification, selection, eligibility and inclusion

criteria. In case of doubt, divergent issues will be discussed,

and a third reviewer will be contacted for clarification.

Selected articles will be downloaded into the Covidence

programme, which, in partnership with Cochrane, allows

interaction between reviewers and optimises the systematic

review process, based on JBI recommendations. The

extracted data will include specific details on population,

concept and context, study methods and key findings

relevant to the study question.

Summary of Results

The results will be presented in the PRISMA flowchart

(Annex 3). The data extraction table will show it in an

organized and descriptive way, considering the review

questions. Thus, it is essential to identify the facilitating

factors and barriers in the use of VR in pain relief during

labour. These results will be presented in a descriptive and

analytical way, in a table where the characteristics of the

studies and documents considered in the ScR will be

described.

Discussion

VR is a non-pharmacological alternative for pain relief31 and

mapping the facilitating factors and barriers to its use during

labour allows planning interventions for the dissemination

and transfer of the knowledge produced involving nurses,

physicians and women/companions so as to promote the

use of this strategy by enhancing the facilitating factors and

minimising the barriers.

Authors’ contributions

Coelho, M: Rationale for the protocol, methodological

options and writing the manuscript.

Tereso, A: Rationale for the protocol, methodological

options and writing the manuscript.

Conflicts of interest

The authors declare that there is no conflict of interest.

Funding

No financial support was received for this research.

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Theoretical Article

How to cite this article: Watson J. Unitary Caring Science: Caritas Compassion Transpersonal Theory.

Pensar Enf [Internet]. 2023

Oct; 27(1):106-109

. Available from:

https://doi.org/10.56732/pensarenf.v27i1.

296

Unitary Caring Science: Caritas Compassion

Transpersonal Theory

Lisbon, June 27, 2023. Portugal Conference - Encontro Internacional da

Rede Portuguesa da Ciência de Enfermagem para o Cuidado Humano 2023.

Abstract (written by editors)

This article presents a transformative perspective on contemporary nursing, emphasizing

unity and interconnectedness in the post-Covid world. Prof. Jean Watson introduces

"Unitary Caring Science" as a holistic approach to nursing, rooted in three ethical principles:

The Ethic of Belonging, The Ethics of Face, and The Ethics of Hands. These principles

guide the paradigm shift in nursing philosophy and practice.

Dr. Watson discusses the "Ten Caritas Processes®," a foundational language for

understanding and practicing human care. She highlights the importance of "Transpersonal

Caring Moments," where nurses' presence and authenticity influence patient experiences.

The article aligns this approach with the American Nurses Association's new definition,

emphasizing compassion and presence in nursing care, and advocates for a holistic,

interconnected nursing approach to uphold human dignity and compassion.

Keywords

Ethics Nursing; Holistic Nursing; Nursing Care.

Resumo (escrito pelos editores)

Este artigo apresenta uma perspetiva transformadora sobre a enfermagem contemporânea,

enfatizando a unidade e a interligação no mundo pós-Covid. A Prof. Jean Watson apresenta

a "Ciência Cuidadora Unitária" como uma abordagem holística para a enfermagem,

fundamentada em três princípios éticos: A Ética da Pertença, A Ética do Rosto e A Ética

das Mãos. Estes princípios orientam a mudança de paradigma na filosofia e prática da

enfermagem.

A Dra. Watson discute os "Dez Processos Caritas®", uma linguagem fundamental para

compreender e praticar o cuidado humano. Ela destaca a importância dos "Momentos de

Cuidado Transpessoal", onde a presença e autenticidade das enfermeiras influenciam as

experiências dos doentes.

O artigo alinha esta abordagem com a nova definição da Associação Americana de

Enfermagem, enfatizando a compaixão e a presença no cuidado de enfermagem, e defende

uma abordagem holística e interligada à enfermagem para preservar a dignidade e a

compaixão humanas.

Palavras-chave

Ética em Enfermagem; Enfermagem Holística; Cuidado de Enfermagem.

Jean Watson1

orcid.org/0000-0003-1777-7636

1Watson Caring Science Institute; Professor/Dean

Emerita University of Colorado Denver, CON, USA.

Corresponding author:

Dr. Jean Watson

E-mail: jean@watsoncaringscience.org

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Theoretical Article

Introduction

Tumultuous times in our world require a new/old unitary

worldview; an evolving consciousness about converging

ideas of nursing, because we dwell in the sacred circle of life

and death and beyond. Post Covid has awakened us to the

reality of oneness of all, encompassing a quantum leap for a

new worldview, a worldview of unity and connectedness of

all things.

In my writing I refer to this shift as unitary caring science

for nursing, caring, healing and health care. We are faced

with one world/ one humanity/ one Planet.1,2

The framework of unitary caring science and transpersonal

theory includes the following principles: The Ethic of

Belonging; The Ethic of Face; and the Ethic of Hands. Each

one of these informs the transformative unitary paradigm

for Nursing and specifically my work in philosophy and

science of caring as well as transpersonal caring theory.

The Ethic of Belonging

The Ethic of Belonging was posed by French philosopher

Levinas in 19693 and submitted that we all ‘Belong to the

Infinite Field of Universal Cosmic Love’, before our

Separate Being. This worldview of unity and oneness of all

reflects a quantum universe of connectedness, which

transcends our separate ego physical self. This ethic also

represents the reality of the sacred circle of life and death

to which we all belong, before birth and after death,

awakening the sacred science of caring. Further, Levinas

posed Ethic of Belonging as the first principle of science.

Thus, it is a foundational starting point and worldview for

unitary caring science and my most current theoretical

philosophical perspective.

The Ethics of Face

The Ethics of Face, likewise was posited by Levinas3 as a

core principle of human evolution and survival of

humanity. His work on Ethics of Face acknowledged that

humanity either evolves further as infinite evolution to

higher consciousness – Or – we totalize our humanity and

each other. The view is in spite of the paradox of virtual

reality; in that “the only way we can survive as humans at

this point in human history is through the Face -to-Face

connection”. ‘When we look into the face of another

person, we are looking into the mystery and infinity of

human soul; when we look into the mystery and infinity of

other, it mirrors back the infinity of our own soul. The Face

to Face connection also reflects the Ethic of Belonging that

unites us across time and space.

The Ethics of Hands

The third principle of Unitary Caring Science is posited by

Ethicist Logstrup,4 a Danish philosopher. His philosophy

highlighted the metaphorical and literal reality that we hold

another person’s life in our hands. This ethic is core to

nursing and human caring practices. In his words he noted:

“The life in our hands is a sovereign expression of life as given to us,

before and beyond ego; with expressions of trust, love, honesty,

forgiveness, gratitude - beyond feelings that are negative expressions of

life...“.4(p18) He referred to this view as an Ethical Demand,

to take care of the life which is in our hands. Within caring

science and the infinite energy of love, it is important to

highlight that our hands are connected with our heart; the

heart is the very source of love, caring, compassion and our

inner truth. So the ethics of hands takes on important

meaning for nursing and the use of our hands in healing.

10 Caritas Processes®

The Ten Caritas Processes of the transpersonal caring

theory, provide core language of the universals of human

caring, which nurses are offering every day. However,

because Caring has not been named, it has been invisible,

without acknowledging, naming, documenting,

researching. Further caring language has not been used as

the foundational ethical, philosophical guide to micro and

macro caring practices, contributing to patient and nurse

caring-healing and health outcomes. It must be

acknowledged in this postmodern time, that any profession

without its own language does not exist. It is also important

to know that these 10 Caritas Processes are located within

the larger unitary caring science paradigm, the most mature

level for honoring nursing’s phenomenon and vicissitudes

of human experiences.

Transpersonal Caring Moment

The nurse-patient relation in any given moment is affected

by the presence, intentionality, consciousness, authenticity

of the nurse in a given moment. Each caring moment is

informed by nurse’s theory, philosophy, ethic and authentic

use of self in a given moment. Unitary Caring Science is

context for any and each transpersonal caring moment,

guided by the professional nurse’s evolution and

consciousness. Such mature practice at micro and macro

level can be framed as Caring Praxis, beyond usual practice

of Doing, transformed toward a Relational Ontology of Being.

The ten Caritas Processes provide the language and

theoretical foundation and structure of nursing. However,

where the theory lives is in a Caring Moment, which is

transpersonal, in that each moment is unique and goes

beyond two individuals; rather beyond ego of nurse or even

ego of nursing profession; rather nurse being authentically

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| Watson, J.

Theoretical Article

present, open and receptive to ‘see’, ‘to hear’ and to honor

with dignity each individual.

Caritas Process 1: Embrace - Practice of Loving

Kindness, Compassion and Equanimity, for Self-first:

before one is able to offer another authentic caring.

Professional theory-guided practice requires informed

moral action, such as honoring each of the Caritas Processes

as guide for self as well as other.

Caritas Process 2: Inspire - Faith and Hope, through

authentic presence. Honoring the subjective beliefs and

inner life world of other; appreciating sacred presence.

Staying within other’s frame of reference. There is so much

research and knowledge about the role of faith and hope;

the role of religion and one’s inner belief system which

affects outcomes. In this process the nurse honors the

whole person and their inner world beliefs even if they differ

from mainstream medicine. Here the nurse works strictly

from patient/family beliefs, not judging or attempting to

impose own beliefs; while inspiring and enabling

patient/family practices.

Caritas Process 3: Trust - Transpersonal Self-being

sensitive to self/ others-going beyond ego to transpersonal

presence. Trust is immediately detected by the nurses’

presence, intentionality, heart-centered awareness; holding

space for pausing, listening, hearing beyond words. As soon

as the nurse walks into a patient’s room, the patient will

know whether they can trust this nurse or not.

Caritas Process 4: Nurture - Relationship. Heart to heart

authentic relation via trust and loving presence. Holding

Caritas Consciousness in relation with other. Everything is

in-relation and here the nurse moves beyond Doing Nursing

to Being authentically presence. Caritas Process 3 and 4 go

hand in hand.

Caritas Process 5: Forgive - All – Allow for expression of

positive and negative feelings; non-judgmental acceptance,

holding sacred space to listen to another’s story. Listening

to other’s story may be the greatest healing gift – where for

perhaps for the first time, they hear themselves beyond the

usual inner script; Nurse is there holding sacred space

allowing patient to hear self; result they often come up with

new solutions and new options for self; for self-care; self-

knowledge, even self-healing approaches.

Caritas Process 6: Deepen - Creative self; nurse and

patient move beyond ‘problems’ to strengths and creative

solutions; allow for creative emergence. Invite an Expanded

epistemology – allowing for multiple and all ways of

knowing to be considered, not just empirical data alone. It

is unethical to limit our knowledge and ways of knowing to

only one form of knowledge. Subjective meaning and inner

life experiences also count as knowledge, as well as personal,

intuitive, aesthetic, ethical, spiritual as well as empirical-

scientific knowledge.

Caritas Process 7: Balance - Learning with authentic

teaching; appreciating inner listening and subjective

meaning for understanding one’s inner life world, leading to

heart-centered wisdom. This process results in ‘coaching’

other in self-caring; self-knowledge; self-control; self-

choices; and self-healing approaches. Without learning,

there is no teaching. It requires realizing that information is

not knowledge; knowledge alone is not understanding;

understanding is not same as internalizing; internalizing

leads to wisdom.

Caritas Process 8: Co-create - Caritas Field; create healing

environment, by ‘being’ the caritas field of loving-trusting,

heart-to-heart connections. The Caritas Conscious nurse is

the Healing environment. We can have the most beautiful

physical environment, but if the humans in the field are not

caring the environment can be toxic or biocidic for nurse as

well as patients/families.

Caritas Process 9: Minister - Humanity and basic needs

with reverence as sacred acts; sustaining human dignity;

viewing bodyspirit as one. Helping another with basic

human needs when they are unable to do for self, is one of

greatest healing acts nurses offer to humanity. A Caritas

Conscious Nurse knows they are not just touching the body,

but also the mind, the heart and the soul of patient.

Requiring a Caritas loving Consciousness to minister to

another as a sacred gift.

Caritas Process 10: Open - To infinity and evolution of

consciousness; allowing to spiritual existential unknowns,

beyond conventional medical science, open to miracles and

mystery of caring-healing and infinite possibilities.

Conventional science and Western mindsets of medical

science do not have all the answers to human health and

healing. Nurses experience miracles and mystery in patient

outcomes every day.5

Summary Note on Caritas Processes®

It is important to note that the Caritas Processes are not

linear. They are a gestalt of the whole Caritas Consciousness

in any given moment. It is like a hologram. The whole

Caritas Consciousness is present in any given moment.

Transpersonal caring moment represents any of the Caritas

Processes which transcend time, space, and physicality. A

transpersonal caring moment of any of the Caritas processes

lasts with the patient and the nurse as long as they life,

informing the next moments of their life. Thus, the Ethic of

Belonging, the Ethic of Face and Ethic of Hand are present

through Transpersonal Caritas in any given moment. This

dynamic is a life-giving and life-receiving exemplar of

Caritas Praxis.

As a transition from overview of Caring Science Caritas

Processes and Transpersonal Moment it is helpful to

examine the congruence between Unitary Caring

Science/Caritas Processes and Transpersonal with the latest

definition of Nursing from American Nurses Association

(ANA).

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Theoretical Article

Current Definition of Nursing: American Nurses

Association ANA (2021-22)

Nursing integrates the

art and science of caring

and

focuses on the protection, promotion, and optimization of

health and human functioning; prevention of illness and injury;

facilitation of healing

; and alleviation of suffering

through

compassionate presence

. Nursing is the

diagnosis and treatment of human responses and advocacy

in the care of individuals, families, groups, communities, and

populations

in recognition of the connection of all

humanity.

The highlighted areas with the latest ANA definition reflects

a Unitary Caring Science Paradigm and Transpersonal

Caring values as part of the evolved definition of nursing. It

is the first time ANA has included caring in its definition;

previously the definitions were medicalized-clinicalized

views of nursing and humanity, e.g. diagnosis and treatment

language.

Together Unitary Caring Science and Transpersonal Caring

Theory provide a mature disciplinary foundation for

Nursing for this time of change, so needed to sustain human

caring and human dignity for both nurses and patients alike.

Identifying the Ethics and Quantum Transformative

thinking for Unitary Caring Science provide a universal

timeless framework for nursing past, present and future.

In summary I have identified the essence and advantages of

expanding Nursing and Unitary Caring Science Paradigm

and Transpersonal Caritas as a way forward to sustain

nursing’s global covenant with humanity.

Watson Essence Of Unitary Caring Science

Brings infinity of LOVE back into Nursing and

Health Care/ Science

Provides Universal Nursing Language for Universals

of Caring Phenomena

Introduces Transpersonal - Metaphysical – Sacred

Integrates ancient and contemporary Energetic

Caring Healing Arts

Provides a Full Circle of Caring Science evolution:

E.G. Unitary Philosophy - Ethic – Theory –

Micro/macro Caritas Praxis/Education-

Measurements and Research.

Final Summary

Unitary Caring Science: Transpersonal Human Caring

provides a full circle of knowledge to guide the practice,

research, education and leadership for Nursing’s’ future:

The core Philosophy; the Ethical principles of Unitary

Caring; Core Values that guide Caritas Processes as

theoretical frame for micro and macro practices; combined

with Measures and outcomes of Caring as essential to all

healthcare. Philosophy/ Ethic/ Values/ Theory/ Practice/

Research-Measures/ Outcomes Without nursing advancing

within its own philosophical - ethical – theoretical

framework, it is doomed to remain as very good technicians

of a totally new quantum universe, required for caring

healing and health for all.

References

 Watson, J. Unitary caring science: the philosophy and

praxis of Nursing. Louisville: University press of Colorado;

2018. 204 p.

 Watson, J. Caring science as sacred science. Boulder:

Lotus Library; 2021. 289 p.

 Levinas, E. Totality and infinity. Pittsburgh: Duquesne

University Press; 1996.307p.

 Logstrup, K. The Ethical demand. Paris: University of

Notre Dame; 1997. 342 p.

 Watson, J. Nursing the philosophy and science of caring.

Boulder: University Press of Colorado; 2008. 313 p.

 Watson, J. (Ed.). Miracle and mysteries: witnessed by

nurses. Deerfield Beach: Lotus Library; 2019. 174 p.

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oncological palliative care in home care service: integrative review. Pensar Enf [Internet]. 2023

Oct; 27(1):110

8. Available from: https://doi.org/10.56732/pensarenf.v27i1.278

Cost of oncological palliative care in home care

service: integrative review

Abstract

Objective

Investigate scientific articles related to the cost of the Home Care Service for

patients undergoing oncology palliative care.

Methods

Integrative literature review, which included primary articles indexed in the PubMed,

Scopus, Virtual Health Library (VHL), Embase, Science Direct and Scielo databases, using

the descriptors: neoplasms; oncology; home care; palliative care; cost analysis; costs.

Results

Ten studies were included, three from the United Kingdom, three from Spain, followed

by two from Italy, one from the United States of America and one from Canada. Studies

have shown lower costs for home hospitalization with monitoring by healthcare teams,

including when analyzing terminally ill cancer patients and disease prognosis.

Conclusion

It was evidenced that the costs of care provided to patients undergoing oncological

palliative care are lower in a home environment than at a hospital level.

Keywords

Medical Oncology; Home Care Services; Palliative Care; Costs and Cost Analysis.

Patrícia Christovão Vidotto1

orcid.org/0000-0003-1516-7236

Patricia Aroni2

orcid.org/0000-0001-5092-2714

Tatiana da Silva Melo Malaquias3

orcid.org/0000-0001-5541-441X

Maynara Fernanda Carvalho Barreto4

orcid.org/0000-0002-3562-847

Maria do Carmo Fernandez Lourenço Haddad5

orcid.org/0000-0001-7564-856

1 Nurse. Master in Nursing. Graduate Program in

Nursing, State University of Londrina, Londrina,

Brazil.

2 Nurse. PhD in Nursing. Department of Nursing,

State University of Londrina, Londrina, Brazil.

3 Nurse. PhD in Nursing. Department of Nursing,

State University of the Midwest, Guarapuava, Brazil.

4 Nurse. PhD in Nursing. Nursing Department, State

University of Northern Paraná, Bandeirantes, Brazil.

5 Nurse. PhD in Nursing. Department of Nursing,

State University of Londrina, Londrina, Brazil.

Corresponding author:

Tatiana da Silva Melo Malaquias

E-mail: tatieangel@yahoo.com.br

Received: 15.05.2023

Accepted: 12.09.2023

Pensar Enfermagem / v.27 n.01 / October 2023 | 111

DOI: 10.56732/pensarenf.v27i1.278

Review Article

Introduction

Cancer is among the main Chronic No Communicable

Diseases (NCDs) and represents the second leading cause

of death in the world, with one in every six deaths being

related to the disease. Among the most common types of

lung cancer (2.09 million cases), breast (2.90 million cases),

colorectal (1.8 million cases), prostate (1.28 million cases),

non-melanoma skin cancer (1.04 million cases) and

stomach cancer (1.03 million cases).1

Regarding the severity of NCDs, an analysis by the World

Economic Bank estimated that countries such as Brazil,

China, India, and Russia lose, annually, more than 20

million productive years of life due to NCDs.2 From this

perspective, Oncological diseases represent a major public

health problem, due to the significant cost of treatment,

hospitalization, and the need for continuity of care for

individuals in palliative care.

According to the World Health Organization (WHO), in a

concept defined in 1990 and updated in 2002 and 2017,3

palliative care refers to actions that improve the quality of

life of patients and families facing problems associated with

life-threatening illnesses. It aims to prevent and alleviate

suffering, through early identification, correct assessment,

and treatment of pain and other physical, psychosocial, or

spiritual problems.

It is noteworthy that contingency plans focused on de-

hospitalization, and optimization of financial resources are

extremely relevant, as they constitute strategies that aim to

analyze resources and health actions that favor adequate

planning, as well as targeting to the various levels of health

care.4

Assistance or home care (HC) corresponds to the set of

health actions, integrated into the Health Care Network

(HCN), to guarantee the continuation of care for the

individual who needs care. This service is available in Brazil

through the Unified Health System (SUS), through

multidisciplinary teams and is also offered by other private

service providers, known as home care services.5

Within this scenario and perspective, in Brazil, Resolution

No. 41/2018 defined together with the Tripartite

Intermanagers Commission of the National Council of

Health Secretaries (CONASS) and municipal secretariats,

provided for guidelines for the organization of palliative

care, in light of continued care integrated, within the scope

of the Unified Health System (SUS). According to Article

5, palliative care must be offered anywhere in the health

care network, at no cost to the patient and their family,

notably in primary care, home care, outpatient care,

urgent/emergency care, and hospital care.6

Across the world, healthcare costs are expensive. When it

comes to hospital care, it is even higher. Depending on the

evolution of the disease, patients undergoing oncology

palliative care undergo several readmissions. When it is

possible to decrease readmission rates and shift care to

home care, it can lead to a significant difference in hospital

expenses.7

The cost is the sum of expenses with personnel, material,

physical structure, and equipment used and must be

understood as an important management tool for analyzing

performance, productivity and quality of services.8

The first stage of the process consists of verifying the costs

of health services, procedures, and treatments. According

to the analysis carried out, pharmacoeconomic evaluations

have different denominations, including: cost-

minimization, cost-effectiveness, cost-utility and cost-

benefit.9 In this sense, economic evaluation in health plays

a prominent role, requiring managers to face new

challenges in the continuous search for efficiency and

effectiveness of activities. Quality associated with the

rational use of resources must be the new challenge for

health service managers.10-11

Therefore, it is essential to measure health costs, for a

careful analysis of the service scenario to support decision-

making by managers in the selection of tools and

management models that qualify the care provided to the

population involved, especially people with cancer in

palliative care. In view of the above, the objective of this

study was to investigate scientific articles related to the cost

of the Home Care Service for patients undergoing

oncology palliative care.

Methods

This is an Integrative Literature Review that followed six

standardized steps:12 in step I, the definition of the research

problem and the guiding question were established, using

the acronym PICo,13 where the “P” refers to the population

study or the patient, or the problem addressed

(Population/Patient/Problem), which in this review refers

to cancer patients; the “I” is the phenomenon of Interest

(Interest), which were the costs of the home care service

for palliative care and the “Co” to the context (Context),

what was home care. Therefore, the guiding question of

the research was: “What is the cost of home care for

patients undergoing oncology palliative care?”

In stage II, the inclusion criteria were defined, which were

indexed articles, complete texts without definition of

temporality or country of publication, in Portuguese,

Spanish and English, related to the guiding question and

developed in human beings, without restriction on age

range in palliative oncology care.

Studies that addressed palliative care in the hospital area,

letters to the editor, duplicates, opinion and review articles

of any nature, theoretical reflection, comments, essays,

preliminary notes, editorials, letters, theses and

dissertations, course completion works, manuals,

summaries in annals or periodicals, dossiers, official

documents, health policies, hospital management reports,

books and book chapters were excluded.

Data collection took place in October 2021 in databases

and electronic libraries: Scopus; BASIS; Science Direct,

PubMed (MedLine), Scielo, Web of Science and the Virtual

Health Library (VHL), with the descriptors presented by

the search strategy in Table 1.

112 | Malaquias, T.

Article

(To be added by the editorial staff)

Table 1 – Search string to identify studies on the costs of palliative oncology care in Home Care Services

The studies were analyzed descriptively using tables. The

classification regarding the level of evidence was carried out

according to Melnyk and Fineout-Overhol,14 which

establishes levels from 01 to 07: level 1, the evidence comes

from a systematic review or meta-analysis of all relevant

randomized controlled clinical trials or clinical guidelines

based on systematic reviews of randomized controlled

clinical trials; level 2, evidence derived from at least one

well-designed randomized controlled clinical trial; level 3,

evidence obtained from well-designed clinical trials without

randomization; level 4, evidence from well-designed cohort

and case-control studies; level 5, evidence from a systematic

review of descriptive and qualitative studies; level 6,

evidence derived from a single descriptive or qualitative

study; level 7, evidence from the opinion of authorities

and/or the report of expert committees.

As it is an integrative review, the research was not

submitted to the Research Ethics Committee.

Results

Identified 84 articles according to the initial search strategy.

Of these, five were duplicates, resulting in a total of 79.

There were 18 articles that addressed the research question;

and after reading the full texts, ten studies were selected to

be part of this review. The search, selection and analysis

process of studies was carried out by two independent

reviewers, with the help of the Rayyan reference manager

software and any disagreements were resolved by a third

reviewer.

Figure 01 represented by Preferred Reporting Items for

Systematic Reviews and Meta-Analyses (PRISMA)15

presents the study selection flow.

Database and

Libraries Descriptors Search strategy Initial number of

articles

PubMed (Medline) MeSH

“Cost analysis AND home care AND

palliative cancer patients”

Scopus MeSH “Cost analysis AND home care AND

palliative cancer patients” 11

BVS DeCS

(Home visit OR Home care) AND

(Palliative treatment OR Palliative care

OR Palliative care) AND (Oncology

OR Cancer OR Neoplasia) AND

(Cost analysis OR Costs)

Embase (Elsevier) MeSH 'Cost analysis' AND ' home care'

AND palliative AND care 29

Scielo MeSH

(Cost analysis) AND (home care)

AND (palliative care)

Science Direct MeSH

Cost analysis' AND 'home care' AND

palliative AND care

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DOI: 10.56732/pensarenf.v27i1.278

Review Article

Figure 1 – Flowchart of the process of identification, selection, eligibility, and inclusion of studies. Source: Adapted from

PRISMA 2020

For the analysis and synthesis of the ten selected articles, a

synoptic table was used containing title, year and country

and another with objective(s), method, results and

recommendations/conclusions (table 2).16

The articles were categorized by theme: comparison of the

cost of home care versus hospital service; cost in the last

days-months of life; and cost according to the prognosis of

the disease. The number of articles published

internationally stands out: three from the United

Kingdom,17-19 three from Spain,20-22 one from the United

States of America,23 two from Italy,24-25 one from

Canada,26 starting publications in 1986.

Table 3 presents data relating to the cost analysis of cancer

patients in home care services.

Table 2 – Characterization of the ten primary articles included in the integrative review according to title, year, and country.

Title

Ano

País

A comparative assessment of home versus hospital comprehensive treatment for advanced cancer

patients.

1986 USA*

A comparative cost analysis of terminal cancer care in home hospice patients and controls

1987

United Kingdom

A cost-minimization study of cancer patients requiring a narcotic infusion in hospital and at

home

1991 United Kingdom

Home palliative care as a cost-saving alternative: Evidence from Catalonia

2001

Spain

Cost analysis of a domiciliary program of supportive and palliative care for patients with

hematologic malignancies.



2007 Italy

Use of resources and costs of palliative care with parenteral fluids and analgesics in the home

setting for patients with end-stage cancer 2010 United Kingdom

Studies identified in the database

(84)

Exclusion of duplicate studies (5)

Studies selected for reading titles and

abstracts (79)

Studies excluded after reading (61)

Studies eligible for full-text reading

(18)

Studies excluded after reading (08)

1. Hospital-based approach

to palliative care (05)

2. Full text not found (03)

Studies included in the review (10)

Identification

Selection

Eligibility

Inclusion

114 | Malaquias, T.

Article

(To be added by the editorial staff)

Resource utilization and cost analyses of home-based palliative care service provision: The

Niagara West End-of-Life Shared-Care Project

2012

Canada

Actividad asistencial y costes en los últimos 3 meses de vida de pacientes fallecidos con cáncer en

Euskadi

2017

Spain

Comparación directa de los costes sanitarios en los 2 últimos meses de vida en pacientes

oncológicos a partir de certificados de defunción en un área periurbana según reciban o no

atención en su domicilio por un equipo de cuidados paliativos

2018 Spain

Early Palliative Home Care versus Hospital Care for Patients with Hematologic Malignancies: A

Cost-Effectiveness Study

2020 Italy

Note: USA* – United States of America

Table 3 – Selected publications referring to the cost analysis of cancer patients in home care services compared to hospital

services.

Base

Title /

Level of Evidence

Periodical/

Year/Country/DOI

Objective Main results

Scopus

A comparative

assessment of home

versus hospital

comprehensive

treatment for

advanced cancer

patients.

Evidence - IV

J Clin Oncol. 1986.

United States

DOI:

https://doi.org/10.1200/

JCO.1986.4.10.1521

Prospectively compare the costs

of home and hospital treatment

for patients with advanced

cancer

Home treatment had a daily cost

of US$256 lower than the

hospital cost

Science

Direct

A comparative cost

analysis of terminal

cancer care in home

hospice patients and

controls.

Evidence - IV

Journal of Chronic

Diseases. 1987. United

Kingdom

DOI:

https://doi.org/10.1016

/0021-9681(87)90132-9

To compare the costs of the last

90 days of life in 98 terminal

cancer patients treated by a

home care service versus

hospital care

The costs of 24-hour medical

and nursing care at home and

support for their families had an

average cost of US$6,477 versus

US$6,502 for the hospital daily

rate

Scopus

A cost-minimization

study of cancer

patients requiring a

narcotic infusion in

hospital and at

home.

Evidence - III

Journal of Clinical

Epidemiology. 1991.

United Kingdom

DOI:

https://doi.org/10.1016/

0895-4356(91)90043-9

Compare the cost in Canadian

dollars of cancer management in

patients who required narcotic

infusions in the hospital and at

home

Medical costs averaged

C$369.72/day of hospital stay

and C$150.24/day of home care

(saving C$219.48/day in 1988).

Narcotic costs were the same for

any patient in both settings

PubMed

Use of resources and

costs of palliative

care with parenteral

fluids and analgesics

in the home setting

for patients with end-

stage cancer.

Evidence - IV

Ann Oncol. 2010. United

Kingdom

DOI:

https://doi.org/10.1023/

A:1008364401890

Identify the cost of home care

and the cost of hospitalized

patients

The daily cost for each patient

was between US$250 and

US$300, half of which is for

hospital expenses. A hypothetical

control group (n=25) was

constructed based on current

practice and chart review cost

approximately $750/day. With an

average treatment period of 16

days, this means savings of

US$8,000 per patient

Scopus

Resource utilization

and cost analyses of

home-based palliative

care service

provision: the

Niagara West End-

of-Life Shared-Care

Project.

Evidence - IV

Palliative Medicine. 2012.

Canada

DOI:10.1177/026921631

1433475

Analyze the cost of cancer

patients receiving home care

Costs for all patient-related

services (in 2007) were

C$1,625,658.07 or

C$17,112.19/patient, being

C$117.95/day. It was observed

that home care is less expensive

than hospital care

Scopus

Early Palliative

Home Care versus

Hospital Care for

Patients with

Hematologic

Malignancies: A

Cost-Effectiveness

Study.

Journal of palliative

medicine 2020.

Italy

DOI:

https://doi.org/10.1089/

jpm.2020.0396

Compare costs and outcomes

between early palliative home

care and hospital care for early

or terminally ill hematological

palliative patients

Home care generated weekly

savings of €2,314.9 for the

healthcare provider, at a cost of

€85.9 for the family, and was

cost-effective for preventing

infections

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Evidence - III

Table 4 presents publications according to categorization,

referring to palliative patients at the end of life, compared

to the costs of palliative patients in the hospital.

Table 4 – Selected publications referring to cost analysis in the last days-months of life of patients with oncological diseases in

home care services.

Base Title /

Level of Evidence

Periodical/Year/Cou

ntry/

DOI

Objective Main results

Scopus

Home palliative care as a

cost-saving alternative:

Evidence from

Catalonia.

Evidence - IV

Palliative Medicine.

2001. Spain

DOI:

https://doi.org/10.119

1/02692160167832025

Compare the care

resources consumed

during the last month

of life of patients

undergoing palliative

treatment who died of

cancer

The costs of hospital care were 71%

higher than home care

Scielo

Actividad asistencial y

costes en los últimos 3

meses de vida de

pacientes fallecidos con

cáncer en Euskadi.

Evidence - IV

Gaceta Sanitaria. 201.

Spain

DOI:

https://dx.doi.org/10.1

016/j.gaceta.2016.06.00

Analyze the use of

health resources and

budget in the last

months of life of the

population who died

of malignant neoplasia

in the Basque

Autonomous Country

(Spain)

People who died in hospital had an

average cost of €14,794 approximately

double that of people who died at

home, and €7,491

Science

Direct

Comparación directa de

los costes sanitarios en

los 2 últimos meses de

vida en pacientes

oncológicos a partir de

certificados de defunción

en un área periurbana

según reciban o no

atención en su domicilio

por un equipo de

cuidados paliativos

Evidence - IV

Medicina Paliativa.

2018. Spain

DOI:

10.1016/j.medipa.2017.

05.003

To compare the

healthcare costs of

care in the last two

months of life for

patients with advanced

cancer, based on death

certificates, in a

metropolitan area of

Madrid, depending on

whether or not they

were monitored at

home by a home

palliative care team

The average cost per patient was

€3,158, regardless of whether or not

they were monitored by a palliative care

team.

Table 5 describes the study that addressed the cost

according to the prognosis of the disease.

Table 5 – Selected publication referring to cost analysis according to the prognosis of oncological disease in home care services.

Base

Title /

Level of

Evidence

Periodical/Year/Count

ry/DOI Objective Main results

Scopus

Cost analysis of a

domiciliary

program of

supportive and

palliative care for

patients with

hematologic

malignancies.

Evidence - IV

Haematologica. 2007.

Italy



DOI:

https://doi.org/10.3324

/haematol.10324



To analyze the use of

resources and costs

of a home palliative

care program for

four different groups,

subdivided according

to the status of

hematological

malignancy

The cost of the home care program was less

than charges but exceeded district rates for

cancer patients. In hematology patients, costs

differ according to disease status and

transfusion requirements.

Discussion

The results of the studies demonstrate that the de-

hospitalization of patients in palliative care must be

predicted through descriptive and qualitative economic

aspects. It needs to be based on the exchange and

discussion of cases in multidisciplinary teams, with the

participation of the patient and family, in the period prior

to hospital discharge, seeking to address possible needs,

thus characterizing a continuous, organized, and structured

process. Thus, the use of these procedures would make it

possible to meet all the necessary elements to implement

the procedure and resolve the expectations of the patient

and their family regarding home care.27

Some studies also reinforce that cost-effectiveness and

utility costs are greater when comparing home and hospital

116 | Malaquias, T.

Article

(To be added by the editorial staff)

care, both for the patient and the family, emphasizing that

the quality of life of patients and family support are

greater.25

There is evidence that the costs of home palliative care are

lower than the costs of hospital care, as it has been

observed that care provided by teams at home contributes

to reducing hospital readmission rates and the average

length of stay of patients in hospital, in addition to reducing

the number of interventions and complications resulting

from hospitalization, such as nosocomial infections.28

A study carried out in Italy demonstrated that the costs of

home palliative care for patients with hematological

malignancies are also lower than the costs of standard

hospital care.26

It is important to highlight that, for this type of care, the

consent of the patient and/or family member is extremely

important and, despite the possibility of death occurring at

home, it is necessary that, during the period of care, the

patient and family are capable of developing the ability to

deal with such a situation.

The care plan, prepared by the team, must guide the family

and caregivers on how to care for the patient, as one of the

great advantages observed in home care is the fact that it

allows the individual to have their needs met according to

their preferences, without having to follow the strict rules

and schedules of a hospital, in addition to being able to

enjoy family life.2

In cities in Spain, the average cost per patient in a Home

Care Program and Support Equipment (Programa d'Atenció

Domiciliària i Equips de Suport - PADES) is substantially

lower than in the non-PADES group, with an increase of

71%.19 Just like monitoring, the cost of patients who died

in hospital was €14,794, almost double that of those who

died at home, according to the cost assessment carried out

(€7,491).21

In a study carried out in Brazil, relating the profile of

patients assisted with the costs of home care and in the case

of hospital stays, the results suggest that the average

patient/day cost of home care was R$ 28.26-DP4.10 (US$

12.03 – DP1.74), while the cost of the patient/day of

hospitalization was R$294.46 - DP308.69 (US$ 125.30 –

DP131.36), or we reaffirm that the patient is in home care.

Generally speaking, it tends to be less.29

The modality of home care related to palliative care is part

of the health policy discussion agenda for Latin American

countries that, being justified by the high costs of hospital

inpatient care, seeks a way to optimize two financial

resources. On the one hand, home care can reduce hospital

expenses, on the other hand, it can increase family health

care costs. Research shows that Latino families that

exclusively use public systems for medical care are those

with the greatest economic vulnerability.30

The verified data in our studies favor non-home

oncological palliative care, because also two costs will be

minors, or the patient finds himself in a family

environment, with his loved ones, where he will be able to

feel more comfortable and safer when receiving care.

Likewise, it is important that future health professionals be

trained based on their training to perform home care of

patients in oncological palliative care, with a vision for the

health process as well, and understand it in its

biopsychosocial context.

It is suggested that new research may be developed,

through more open studies, that compare the costs of

home and hospital care for patients in oncological palliative

care, to subsidize the formulation of effective public

policies that reinforce home care and de-hospitalization.

Conclusion

The results of the two studies presented in this review

suggest that the costs of care for cancer patients in the

home environment are less than when we are hospitalized,

regardless of the treatment phase.

Home assistance can also be efficient in the quality of

accompaniment to the patient in his last days of life, since

it is possible for the family (caregiver) to offer emotional

support and adequate infrastructure, as well as having

adequate accompaniment from a multidisciplinary team,

favored by Public Policies that reinforce home care and de-

hospitalization of patients in oncological palliative care.

Limitations of the study

As a limitation for the development of this review we can

highlight the lack of publications addressed to the costs

related to oncological palliative care in home care,

impacting the generalization of two results for other

regions that perform this type of care.

Authors’ contributions

PCV: Conception and design of the study; Data collection;

Data analysis and interpretation; Writing the manuscript;

Critical revision of the manuscript.

PA: Conception and design of the study; Analysis and

interpretation of the data; Writing of the manuscript;

Critical revision of the manuscript.

MFCB: Conception and design of the study; Analysis and

interpretation of the data; Writing of the manuscript;

Critical revision of the manuscript.

TSMM: Conception and design of the study; Analysis and

interpretation of the data; Writing of the manuscript;

Critical revision of the manuscript.

MCFLH: Conception and design of the study; Data

collection; Data analysis and interpretation; Writing the

manuscript; Critical revision of the manuscript.

Conflicts of interest

The authors declare that there is no conflict of interest.

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20161080013

| 119

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DOI: 10.56732/pensarenf.v27i1.265

Review Article

How to cite this article: Sitja LE, Simon BS, Assis MCS, Busanello J, Stamm B. Quality Indicator in

Nutritional Therapy in oncology and the interface with nursing: integrative review. Pensar Enf [Internet].

2023

Dec; 27(1): 119-130. Available from: https://doi.org/10.56732/pensarenf.v27i1.265

Quality indicator in nutritional therapy in oncology

and the interface with nursing: integrative review

Abstract

Objective

To analyze the evidence of the Indicator of Quality in Nutritional Therapy “prescribed

versus infused volume in nutritional therapy” in hospitalized adult cancer patients and the

prospects for nursing practice.

Methods

An integrative review conducted in the Portal Biblioteca Virtual em Saúde, Nursing

Database, Cumulative Index to Nursing & Allied Health Literature, Excerpta Medica

dataBASE, Google Scholar, Latin America and the Caribbean Literature on Health

Sciences, U.S. National Library of Medicine, SciVerse Scopus Web of Science. This

research included studies published in Portuguese, English, or Spanish from 2008 to 2021.

Results

Of the nine studies included most of the authors were nutritionists and/or nutrition

academics (53.8%), followed by nurses and/or nursing academics (30.8%). Most studies

(67%) did not reach the indicator target, being investigated in clinical and/or surgical wards

(27.3%) and adult/general Intensive Care Units (27.3%). The reasons for not meeting the

indicator goal were related to clinical and mechanical complications of the use of nutritional

therapy.

Conclusion

The goal of the indicator in “nutritional therapy prescribed versus infused volume” was not

achieved in most studies, and the adult cancer patient presents clinical difficulties in

achieving it.

Keywords

Quality indicators in Health Care; Quality Indicators in Nutritional Therapy; Enteral

Nutrition; Hospitalization; Neoplasms; Nursing.

Laísa Escobar Sitja1

orcid.org/ 0000-0002-1455-072X

Bruna Sodré Simon2

orcid.org/-0000-0003-3855-1310

Michelle Cristina Silva de Assis3

orcid.org/0000-0003-2632-5885

Josefine Busanello4

orcid.org/0000-0002-9950-9514

Bruna Stamm5

orcid.org/0000-0003-4858-7712

Nurse. Multidisciplinary Integrated Residency

Program in Public Health, Federal University of

Pampa, Uruguaiana, Brazil.

2 Nurse. Doctor. Adjunct teacher of the Undergraduate

Nursing Course at the Federal University of Pampa,

Uruguaiana, Brazil.

3 Nurse. Doctor. Adjunct teacher of the Undergraduate

Nursing Course at the Federal University of Rio

Grande do Sul, Porto Alegre, Brazil.

4 Nurse. Doctor. Adjunct teacher of the Undergraduate

Nursing Course at the Federal University of Pampa,

Uruguaiana, Brazil.

5 Nurse. Master

. Assistant professor of the

Undergraduate Nursing Course at the Federal

University of Pampa, Uruguaiana, Brazil.

Corresponding author:

Bruna Stamm

E-mail: brunastamm@unipampa.edu.br

Received: 06.03.2023

Accepted: 14.09.2023

120 | Stija, L.

Review Article

Introduction

The hospitalized adult cancer patient due to the clinical

conditions that the disease triggers, such as metabolic

changes, hormonal disorders, and inflammatory responses,

becomes more susceptible to nutritional deficits, which are

related to multifactorial aspects associated with the type of

tumor, clinical staging, therapeutic modality, individual

characteristics of the patient and human and physical

resources of the inpatient unit.1,2 Studies3,4 reveal that the

hospitalized cancer patient is a population at nutritional risk

with a degree of malnutrition of 20% to 80%, especially in

the older people in the advanced stage of the disease.5

Guidelines6,7,8 advise conducting nutritional screening

within a maximum of 48 hours of hospitalization for all

people to monitor the nutritional status of the cancer

patient. Thus, to meet the nutritional demand, Nutritional

Therapy (NT) is used, with Enteral Nutritional Therapy

(ENT) as one of the therapeutic modalities. In Brazil, the

ENT development requires a Multidisciplinary Nutritional

Therapy Team (MNTT)8 consisting of a doctor, a nurse, a

nutritionist, and a pharmacist. The nurse in the MNTT has,

among her attributions, to choose the route of

administration of the ENT together with the doctor; to

proceed and ensure the placement of the naso/orogastric

or transpyloric tube; to guide the patient, the family or the

legal responsible regarding the use and control of the ENT;

and to ensure the clear and accurate recording of

information related to the administration and the evolution

of the patient.9,10

However, ENT has risks and complications, and based on

this, the Indicators of Quality in Nutritional Therapy

(IQNT) were developed,11 which aim to identify failures in

the performance of procedures to generate improvement

in the assistance provided when there is deficits quality.12

In Brazil, the International Life Sciences Institute (ILSI)13

listed 36 IQNTs, aiming to measure the assistance provided

through indicators that translate the actions and

operationalize them for observation and evaluation,

providing correction, redefinition, and improvement of the

established goals. In Spain, the European Society for

Clinical Nutrition and Metabolism (ESPEN),14 one of the

leading NT societies, also provides instruments to measure

the quality of ENT both in clinical nutrition units, and in

any situation where a patient requires the use of this

therapy. The periodic application of the IQNT stands out

as one of the main ways to measure the ENT quality in

public and private hospitals. The Brazilian Society of

Parenteral and Enteral Nutrition (BRASPEN)9 guides the

application of at least three IQNT in health services to

monitor therapy, regardless of the size and human

resources of hospitals, including: nutritional screening,

frequency of patients with NT-related complications and

prescribed and infused volume of ENT.

The IQNT “NT prescribed versus infused volume” aims to

evaluate patients in ENT who have not reached the

estimated nutritional goal, and it is the responsibility of

Nursing to record their infused volume. In 2018, ILSI-

Brazil13 updated the list of IQNT, adding the indicator

“frequency of days of adequate administration of the NT

prescribed versus infused volume” to find out the frequency

of days of adequate volume supply in patients on ENT. The

goal of this IQNT is for at least 80% of the prescribed

volume of ENT to be infused.13 A study conducted by

ILSI-Brazil 13 with hospital, clinical, and research

institutions highlights that one of the most used IQNT is

the “NT prescribed versus infused volume,” represented in

81% of the institutions participating in the survey.

Given the above, the study identified that hospitalized adult

cancer patients present nutritional risks due to their clinical

condition and present nutritional risks, making them

vulnerable to treatment and possible interventions. Despite

the scientific knowledge that the values of the NT

prescribed versus infused volume in the oncological patient

are discrepant in clinical practice,15,16 professionals must

pay attention to the fact that, in addition to defining the diet

appropriate to the cancer patient’s needs, it is necessary to

guarantee the form and condition in which this diet will be

infused. To this end, many of the activities that nursing

undertakes in hospital health services are included, with the

nurse being responsible for recording the IQNT

“frequency of days of administration appropriate to the

prescribed versus infused volume in patients on ENT.” This

reality supports the importance of exploring this theme and

its interface with nursing.

Methods

This is an Integrative Review (IR),17 held in May and June

2022, which structure is based on the International

Recommendations of the Preferred Reporting Items of

Systematic reviews and Meta-Analyses (PRISMA).18

Initially, based on the acronym PICO:19 (P) hospitalized

adult cancer patient; (I) NT; (O) IQNT “NT prescribed

versus infused volume” (the comparator element ‘C’ was

dismissed), the review question was formulated: “what does

the literature refer to the IQNT NT prescribed versus

infused volume of responsibility of the nursing in the care

of hospitalized adult cancer patients?” The review protocol

has not been published.

Regarding the eligibility criteria, the study defined the

original articles; free available online in full; in Portuguese,

English, or Spanish languages; indexed in the Portal

Biblioteca Virtual em Saúde (BVS), Nursing Database

(BDENF), Cumulative Index to Nursing & Allied Health

Literature (CINAHL), Excerpta Medica dataBASE (Base),

Google Scholar, Latin America and the Caribbean

Literature on Health Sciences (LILACS), U.S. National

Library of Medicine (PubMed), SciVerse Scopus

(SCOPUS), and Web of Science; conducted with adult

oncological patients hospitalized and under EN, and

published from 2008 to 2021. The temporal cut is justified

by the incorporation of the IQNT “prescribed versus

infused volume” in 2008 by ILS,11 even if possibly, the

volume of NT has been monitored by other studies in years

prior to the one stipulated in this review. Then, the study

identified the descriptors or associated terms according to

Pensar Enfermagem / v.27 n.01 / december 2023 | 121

DOI: 10.56732/pensarenf.v27i1.265

Review Article

the acronym PICO 20 and adapted the search strategy for

each source of information, according to Chart 1.

Chart 1 - Search strategies according to each source of information. Uruguaiana, RS, Brazil, 2022.

Information

Base

Strategy

BVS

(“Enteral Nutrition” OR “Enteral Feeding” OR “Feeding Tube, Gastric” OR “Feeding Tubes, Gastric” OR “Feeding, Enteral” OR

“Feeding, Tube” OR “Gastric Feeding Tube” OR “Gastric Feeding Tubes” OR “Nutrition, Enteral” OR “Tube Feeding” OR “Tube,

Gastric Feeding” OR “Tubes, Gastric Feeding” AND (“nutrition therapy” OR “medical nutrition therapy” OR “nutrition therapy,

medical” or “therapy, medical nutrition” OR “therapy, nutrition”) and (volume or prescription or administration) AND ( db:(“IBECS”

OR “LILACS” OR BDENF” OR BIGG” OR “LIPECS” OR “colecionaSUS”)) AND (year_cluster:[2008 TO 2021])

BDENF

(“nutrição enteral” OR “alimentação enteral” OR “alimentação por sonda” OR “alimentação por tubo” OR "Terapia Nutricional") AND

("Indicador de Qualidade" OR “Indicadores de Qualidade em Assistência à Saúde”)

CINAHL

TX (enteral nutrition or enteral feeding or tube feeding) AND TX (quality indicators or qi) AND TX (neoplasms or oncology or cancer)

Embase

(neoplasms OR ‘benign neoplasm’ OR ‘benign neoplasms’ OR cancer OR cancers OR malignancies OR malignancy OR ‘malignant

neoplasm’ OR ‘malignant neoplasms’ OR ‘neoplasm OR ‘neoplasm, benign’ OR ‘neoplasm, malignant’ OR ‘neoplasms, benign’ OR

‘neoplasms, malignant’ OR ‘medical oncology’ OR ‘oncology, medical’) AND (‘enteral nutrition’: ti,ab,kw OR ‘enteral feeding’: ti,ab,kw

OR ‘feeding tube, gastric’: ti,ab,kw OR ‘feeding tubes, gastric’: ti,ab,kw OR ‘feeding, enteral’: ti,ab,kw OR ‘feeding, tube’: ti,ab,kw OR

‘gastric feeding tube’: ti,ab,kw OR ‘gastric feeding tubes’: ti,ab,kw OR ‘nutrition, enteral’: ti,ab,kw OR ‘tube feeding’: ti,ab,kw OR ‘tube,

gastric feeding’: ti,ab,kw OR ‘feeding tube’: ti,ab,kw) AND (‘quality indicators, health care’: ab,ti OR ‘quality indicators’: ab,ti OR ‘quality

indicator’: ab,ti OR ‘healthcare quality indicator’: ab,ti OR ‘healthcare quality indicators’: ab,ti OR ‘indicator, healthcare quality’: ab,ti OR

‘indicators, healthcare quality’: ab,ti OR ‘quality indicator, healthcare’: ab,ti OR ‘quality indicators, healthcare’: ab,ti)

Google Scholar

(neoplasias OR câncer OR tumor) AND ("nutrição enteral" OR "Alimentação por Sonda" OR "Alimentação por Tubo" OR "Sondas

Gástricas") AND (“Indicador de qualidade" OR “Indicadores de qualidade”)

Lilacs

(“Enteral Nutrition” OR “Enteral Feeding” OR “Tube Feeding” OR “Feeding, Tube” OR “Feeding Tube, Gastric” OR “Feeding Tubes,

Gastric”) AND (“Quality Indicators” OR “Quality Indicator” OR “Quality Indicators, Healthcare” OR “Quality Indicator, Healthcare”)

AND (db: (“LILACS”) AND (year_cluster: [2008 TO 2021]

PubMed

(“Quality Indicators, Health Care” OR “Quality Indicators, Healthcare” OR “Healthcare Quality Indicator” OR “Healthcare Quality

Indicators” OR “Indicators, Healthcare Quality”) AND (“Enteral Nutrition” OR “Enteral Feeding” OR “Feeding, Enteral” OR “Tube

Feeding” OR “Feeding, Tube” OR “Gastric Feeding Tubes” OR “Feeding Tube, Gastric” OR “Gastric Feeding Tube” OR “tube, gastric

feeding”)

Scopus

(ALL (neoplasms OR neoplasm OR cancer OR cancers OR tumor OR tumors OR oncology) AND TITLE-ABS-KEY (“Enteral

Nutrition” OR “Enteral Feeding” OR “Tube Feeding” OR “Feeding, Tube” OR “Feeding Tube, Gastric” OR “Feeding Tubes, Gastric”)

AND TITLE-ABS-KEY (“Quality Indicators” OR “Quality Indicator” OR “Quality Indicators, Healthcare” OR “Quality Indicator,

healthcare”)

Web of science

(“Enteral Nutrition” OR “Enteral Feeding” OR “Tube Feeding” OR “Feeding, Tube” OR “Feeding Tube, Gastric” OR “Feeding Tubes,

Gastric”) (all fields) AND (“Quality Indicators” OR “Quality Indicator” OR “Quality Indicators, Healthcare” OR Quality Indica tor,

Healthcare”) (Topic)

The titles and abstracts were then read twice to select the

articles that met the eligibility criteria. Two academic

reviewers from Nursing course analyzed the studies to

qualify the methodological process who, after the selection,

discussed and compared their results. A third reviewer, a

researcher in the EN area, was consulted in cases of

disagreement between the initial reviewers. Finally, the

articles were analyzed integrally, concluding the study

selection phase. The database of studies was organized in

Microsoft Excel®.

Researchers prepared a characterization table to present the

studies that drawn up the analytical corpus, containing title,

reference, objective, design, and level of evidence. 19 Also,

a chart with the results of the IQNT “NT prescribed versus

infused volume” is described, with the aim of summarizing

for nursing the characteristics of the studies according to

whether or not they achieved the indicator’s goal, including

the information: type of cancer, hospital unit, structure for

therapy, characteristics of the NT, length of application of

the ENT, goal of the adopted indicator, values of the

indicator and reasons for stopping the NT (when

mentioned).

Results

According to the search strategies defined for each

information base, researchers identified 602 publications.

After the exclusion of 96 duplicates, 506 studies remained

122 | Stija, L.

Review Article

and, of these, 238 were evaluated according to the eligibility

criteria, and 24 were selected for full reading. Of the 24

studies, 11 were excluded, leaving nine studies included for

review. The description and selection of studies was based

on the PRISMA15 and is illustrated in Figure 1.

Figure 1 - Flowchart of the of studies selected in the review. Uruguaiana, RS, Brazil, 2022.

From: Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group (2009). Preferred Reporting Items for Systematic

Reviews and Meta-Analyses: The PRISMA Statement. PLoS Med 6(6): e1000097. doi:10.1371/journal.pmed1000097

For more information, visit www.prisma-statement.org .

Of the nine studies selected, researchers identified that the

years of publication with the highest records were 2017

(n=4) and 2020 (n=2). The authors’ profile was mainly

nutritionists and/or nutrition academics (n=7; 53.8%),

nurses and/or nursing academics (n=4; 30.8%), and

physicians (n=2; 15.4%). Most of the studies were

prospective (n=6; 66.7%) and retrospective (n=3; 33.3%),

descriptive (n=4; 44.4%), and/or observational (n=5;

Records identified through databases

(n = 602)

Seletion

Inclusion Elegibility Identification

Records after removing duplicates

(n = 506)

Analyzed records

(n = 506)

Excluded records

(n = 268)

Full-text articles evaluated for eligibility

(n = 24)

Full-text articles excluded

for not presenting

information on the diet

volume indicator

(n = 11)

Studies included in the qualitative synthesis

(n = 09)

Pensar Enfermagem / v.27 n.01 / december 2023 | 123

DOI: 10.56732/pensarenf.v27i1.265

Review Article

55.6%), with evidence level N6 (n=8; 89%). The study

participants totaled 1,371 patients, 438 of whom were

cancer patients, since most of the studies included patients

with other clinical conditions in their sample, as shown in

Chart 2.

Chart 2 - Characterization of the studies selected for the review. Uruguaiana, RS, Brazil, 2022.

Title/Year/ country of origin of the

study

Profile of the

authors

Objective

Design/level of

evidence

Sample

Caloric and Protein Infusion versus

Dietary Prescription in Enteral Nutritional

Therapy

for Cancer Patients/ 2021/ Brazil (21)

Nutritionists and

nutrition

academics

To compare caloric and protein infusion with

dietary prescription in oncological patients under

ENT

Retrospective

analytical

observational

120 records

of cancer

patients

High Frequency of Non-Compliance with

Quality

Indicators of Enteral and Parenteral

nutrition

Therapy in Hospitalized Patients/ 2020 /

Brazil

(22)

Nutritionists

To evaluate the frequency of adequacy of the

IQNT in clinical and surgical patients during NE

or NP

Prospective

descriptive

727 patient

records

7 cancer

patients

Are quality indicators of enteral nutritional

therapy useful tools for monitoring

patients with advanced cancer in palliative

care? cancer patients in palliative care?/

2020 / Brazil (23)

Nutritionists

Apply the quality indicators of ENT in patients

with advanced cancer in palliative care

Prospective

descriptive

observational

quantitative

51 cancer

patients

Accidental enteral feeding tube

dislodgement with the use

of a dedicated feeding tube attachment

device versus adhesive tape

as the securing method: a randomized

clinical trial/2019 / Brazil

(24)

Teaching nurses

and doctors

To evaluate the impact of the use of the feeding

tube affixation device (FTAD) compared to the

traditional method of fixation with adhesive tape

on the occurrence of accidental displacement of

the enteral feeding tube

Prospective

randomized, single-

center, non-blinded

clinical trial

104 patients

29 cancer

patients

Prescribed enteral diet versus infused

diet/2017 / Brazil (25)

Nutritionists

Evaluate the prescribed volume of enteral diet

versus the infused volume, identifying the causes

of interruption of the diet and expenses generated

by these interruptions

Retrospective

observational

27 patient

records

1 cancer

patient

Quality control of enteral nutrition

therapy in cancer patients at nutritional

risk/ 2017 / Brazil (26)

Nutritionists and

doctors

To analyze the adequacy and quality of ENT used

in patients diagnosed with cancer and undergoing

treatment in specialized public hospitals applying

IQNT

Prospective

observational

descriptive

211 records

of cancer

patients

Cause of interruption of enteral nutrition

in intensive care units/ 2017 / Brazil (27)

Nutritionists and

nurses

To identify the causes of interruption of the

administration of EN in patients admitted to ICUs

of University hospital

Prospective,

observational

quantitative

53 patient

records

6 cancer

records

Monitoring of Enteral Nutritional

Therapy in

Intensive Care Unit: Calorie-protein

adequacy and survival/ 2017 / Brazil

(28)

Nutritionists

To assess the nutritional status in patients

admitted to the ICU to monitor the ENT to

identify the causes of interruption of the enteral

diet

Prospective

observational

32 patients

1 cancer

patient

Adverse events related to use

of Enteral Nutritional Therapy/ 2014 /

Brazil (29)

Academic

nursing, teaching

nurse

To verify the occurrence of adverse events related

to the use of EN in patients of a public hospital

Retrospective

longitudinal

exploratory

descriptive

46 records

12 cancer

records

ENT: Enteral Nutritional Therapy; NE: Enteral Nutrition; PN: Parenteral Nutrition; ICU: Intensive Care Unit; IQNT: Quality Indicator in Nutritional Therapy.

Source: own elaboration.

124 | Stija, L.

Review Article

When summarizing the studies that did or did not reach the

goal of IQNT “NT prescribed versus infused volume,”

researchers identified that most studies (n=6; 67%) did not

reach their goal. Among the reasons for not meeting the

goal, gastrointestinal, mechanical, and respiratory

complications are described using NT, as shown in Chart

Chart 3 - Characterization of the IQNT “frequency of days of adequate administration of the prescribed versus infused

volume in patients on nutritional therapy,” according to the goal (ILSI, 2018). Uruguaiana, RS, Brazil, 2022.

Reached

the target

of the

indicator

Study

Type of

cancer

Hospital

unit

Structu

re for

ENT

Characteristic

s of ENT

ENT

application

time

Target of

the

indicator

applied by

the

institution

Indicator

results

Reasons for the

interruption of

ENT*

(23)

Head and

neck,

GIT,

Breast,

Lung

Palliative

care unit

It has a

MNTT

Transpyloric

probe

488 days

≥ 80%

Adequacy of

prescribed and

infused volume:

92.6%

Gastrointestinal

complications,

Mechanics,

Respiratory,

Other**

(27)

Not

described

General and

Cardiologica

l ICU

It has a

MNTT

Transpyloric

probe

16.6 ± 12.2

days

≥ 70%

Adequacy of

prescribed and

infused volume:

82.7%

Complications

gastrointestinal

Mechanics,

Metabolic,

Other**

(28)

Not

described

Adult ICU

It has a

MNTT

Transpyloric

and

nasogastric

tube

Average 20.5

days

≥ 70%

Adequacy of

prescribed and

infused volume:

72.6%

Complications

gastrointestinal,

Mechanics,

Other**

Did not

reach the

target of

the

indicator

(21)

Head and

neck,

Gastrointe

stinal

tract,

Gynecolo

gical and

breast,

Male

reproducti

ve system

Adult ICU

Does

not

have a

MNTT

Transpyloric

probe

4 days

≥ 80%

Average

(difference in

volumes)

Day 1: -477.0

Day 2: -298.0

Day 3: -261.4

(peak)

Day 4: -445.9

Adequacy of

prescribed and

infused volume:

62.5%

Gastrointestinal

complications,

Mechanics

(24)

Not

described

Clinical

Ward

Does

not

have a

MNTT

Transpyloric

probe

16 days

≥ 70%

Adequacy of

prescribed and

infused volume:

58.5%

Complications

mechanics

(25)

Laryngeal

cancer

Adult ICU

Does

not

have a

MNTT

Industrialized

diet by

infusion pump

5 days

≥ 70%

Day 1: 741.5 -

498.6;

Day 2: 741.5 -

587.3;

Day 3: 923.1 -

472.5;

Day 4: 846.2 -

401.2;

Day 5: 769.2 -

351.5.

Average

prescribed

volume:

804.3/462.2

Gastrointestinal

complications,

Mechanics

Pensar Enfermagem / v.27 n.01 / december 2023 | 125

DOI: 10.56732/pensarenf.v27i1.265

(26)

Head and

neck,

Gastroint

estinal,

Thoracic,

Gynecolo

gical,

Urological

Lymphom

a /

leukemia

myeloma

Clinical

Ward

(Treatment

for

complicatio

ns of cancer

and / or

chemothera

py and

radiotherapy

)

It has a

MNTT

Transpyloric

probe

Closed system

diet, by

infusion pump

9.7 ± 7 days

≥ 80%

Adequacy of

prescribed and

infused volume:

74.3%

Gastrointestinal

complications

(29)

Not

described

Adult ICU

and medical

clinic

It has a

MNTT

Naso/orogastr

ic tube

Infusion pump

diet

3-30 days

≥ 70%

Average

difference of

the received

diet volume

(estimated -

received): 176.4

Gastrointestinal

complications,

Mechanics

(22)

Not

described

Clinical and

surgical

ward

It has a

MNTT

Transpyloric

probe

7.41 ± 14.22

days

≥ 90%

Adequacy of

prescribed and

infused volume:

66.7%

Gastrointestinal

complications,

Mechanics

ENT: Enteral Nutritional Therapy; EN: Enteral Nutrition; ICU: Intensive Care Unit; MNTT: Multidisciplinary Nutritional Therapy Team.

*Reasons for the interruption of the EN described in the studies were classified as: (a) gastrointestinal complications: vomiting, abdominal distension,

diarrhea, reflux, emesis, gastric residue fasting for tests or procedures, bulky bleeding, melena, gastrointestinal intolerance; (b) mechanical

complications: tube obstruction, inadvertent exit of the tube, extravasation of the diet, delayed delivery of the NE, extubation,

procedures/examinations/surgeries and errors in the administration of the diet; (c) respiratory complications: bronchoaspiration; (d) metabolic

disorders: hemodynamic instability.

** Others: patient refusal, clinical worsening, lack of net protocol, end-of-life care, and death.

Discussion

Following the purpose of this review, the IQNT “NT

prescribed versus infused volume” in oncology has been

little investigated in the literature, and hospitalized adult

cancer patients have clinical difficulties in achieving their

goal. For nursing, summarizing the information of the

investigated IQNT becomes essential in the sense of

strategically directing care to the need for the nutrition of

the oncological patient to optimize treatment and ensure

better quality of life.30

The review identified that the authors’ profile was

composed mostly of nutritionists,21-23,25-28 although nursing

is responsible for monitoring the indicator under analysis.

13 In Brazil, specific legislation31 standardizes the

performance of the nursing team in the oro/nasogastric

and transpyloric probing and highlights the crucial role of

the nurse in the process of installing the device, choosing

the route of administration together with the doctor, in

addition to registration, patient evaluation and monitoring

of complications. However, when it comes to the EN area,

there is a growing line of research conducted by nurses

aimed at care in relation to assertive probe positioning

techniques,32 safe administration of EN,33 monitoring of

complications,34 and nursing protocols for ENT.35

The scientific literature already describes that hospitalized

cancer patients have some degree of malnutrition,5,36 and

ENT is one of the principal therapeutic resources for their

treatment and prognosis.37,38 In addition, cancer is one of

the main underlying diseases of hospitalized adult patients

in Brazil.39

In analytical corpus in which the IQNT goal was not met21-

26,29 the most prevalent cancers were head and neck21,26,

gastrointestinal tract21,26, gynecological21,26 and

urological.21,29 In those who have reached the goal23,27,28 the

most identified cancers were head and neck23

gastrointestinal tract23,27, breast23,28 and lung.23,24 These

findings corroborate with other Brazilian studies40,41 which

also identified the prevalence of these cancers in

hospitalized patients. This situation reflects the statistics

and estimates of the oncological scenario in Brazil, which

identifies breast and gastrointestinal cancers as the most

prevalent in the Brazilian population.42

The analysis also identified that most of the studies failed

to achieve the goal of the investigated IQNT.21-26,29 This

reality allows us to reflect that, could it be the specific

characteristics of the tumor and the treatment, as well as

the nutritional repercussions triggered in cancer patients37,38

that could condition the prognosis of the treatment and its

repercussions? This review found that the nutritional

supply for the cancer patient hospitalized by enteral route

has not guaranteed the adequate/total infusion of the

prescribed volume of EN, and therefore, this route is not

the most appropriate for these patients, and the parenteral

route may be more effective, given the clinical weakness of

the cancer patient throughout his treatment. Therefore, it

is essential that nursing, together with MNTTs, be able to

recognize such specificities, and direct a singular care plan

to provide adequate nutritional support.43 This result is

126 | Stija, L.

relevant in the context of nursing practices since, when

assisting cancer patients within their basic human needs,

food should be prioritized to contribute to treatment.38,44

The IQNT “NT prescribed versus infused volume” reflects

the evolution and quality of nutritional care, and for the

oncological patient to be able to receive the prescribed

volume of EN, several factors are fundamental, such as the

suitable dietary prescription, the appropriate route of

administration of EN, the quality of the EN device, the

monitoring and control of complications.13. Given this,

research32,33,35 reveals the engagement and protagonism of

Nursing in EN area, with promising results regarding good

practices in the administration of EN (GPAEN). 45 In a

study developed in Israel,46 nurses conducted a protocol to

address and correct the deficiencies of EN in an ICU, and

the feeding of the patient was started significantly earlier

(p = 0.007) in the intervention group (52.3 hours; SD, 42.6)

than in the control group (70.3 hours; SD, 65.2). The use

of the protocol resulted in a significant increase in

nutritional intake in 90% in the intervention group.

Studies that did not reach the IQNT goal21-26,29 identified

that the investigated hospital units were clinical and/or

surgical,22,24,26 adult/general ICU,21,25,29 and medical clinic,

29 and only three of these institutions22,26,29 owned MNTT.

Hospitals that reached the indicator’s goal were

general/adult ICU,27,28 Cardiologic ICU,27 and palliative

care unit.23. In these scenarios, the oncological patient is

already in a state of metabolic stress that triggers numerous

nourishing supplements deficits, which result in increased

nutritional needs.1,2 Thus, the research analyzed that, even

in closed/controlled hospital units, such as the ICU, and

the fact that the hospital institution has MNTTs, the

effectiveness of ENT for adult cancer patients is not

guaranteed, which minimally generates a movement to

(re)think nursing practices in ENT in these care units.

Therefore, especially in specific populations, the goal of the

IQNT “NT prescribed versus infused volume” can be

presented above what the cancer patient can receive, and

the patient’s clinical conditions should be evaluated for the

measurement of the indicator goal.

Regarding the length of application of the EN and the

IQNT, the research found that in studies that did not reach

the goal, oncological patients used the EN, on average, for

more than five days,22,24,26,29 corroborating with a study 47

in an oncology hospital, which identified that none of the

patients (n=96) managed to reach the prescribed volume of

EN, on seven days of exclusive EN. Indicator goals for

these studies alternate between ≥ 70%,24-26 ≥80%,21,26 and

≥ 90%,22 indicating that sometimes Brazilian institutions

follow the ILSI Brazil guidelines,13 sometimes they stipulate

their own targets according to the characteristics of the

hospital unit. For institutions that adopt different goals

(higher) than recommended in the guideline,13 planned care

structure, good health practices, and implementation of

protocols are necessary.13 Thus, one of the fundamental

elements for good results is to have MNTTs, which

perform the appropriate nutritional assessment36, choosing

the adequate device,48 the early onset of EN,39 monitoring

for complications of EN,34 the application of IQNT,49 and

continuing education actions.35,43,50

Among those studies that were able to achieve the goal, the

length of application of EN in cancer patients was greater

than five days,23,27,28 evidencing the existence of a

proportional relationship between time and the ability to

achieve the adequacy of the prescribed volume.47 This

situation can be explained because, in the first days of

hospitalization, cancer patients tend to present an unstable

clinical picture, greater exposure to health procedures and

interventions, and a care plan still in definition and

adaptation.48 Therefore, establishing the number of days

for EN requires more time for its administration. The goals

adopted by these institutions ranged from ≥70%27,28 and ≥

80%,26 following the guidelines of ILSI-Brazil and its

reformulations.13

The clinical repercussion in cancer patients who receive a

lower volume of EN is raised in different studies, 3-6 which

demonstrate that not reaching the goal of EN is correlated

with worse clinical outcomes, such as infection 4 issues and

complications3,5,6 during hospital stay. In this sense, there

must be a reflection to try to minimize the discrepancy

between nutritional planning and the effectiveness of this

plan. For nursing, it is necessary to ensure that the

prescribed volume is adequately infused, and, for this, it is

required to train the nursing team regarding the skills and

competencies that subsidize qualified care with EN and

patient safety.51

One of the reasons why the prescribed volume of EN is

not entirely infused in the adult oncological patient is

associated with gastrointestinal, metabolic, mechanical, and

respiratory character complications. Both in the studies that

reached and in those that did not reach the goal of the

indicator, the reasons for the major complications of EN

were gastrointestinal.21-23,25-29 Therefore, the analysis

observed that the main element that makes the cancer

patient unable to reach the prescribed volume of ENT is

linked to its clinical fragility that triggers gastrointestinal

complications, directly affecting the volume that the patient

should receive. That is, the clinical difficulties of the cancer

patient directly affect the volume of infused EN, and not

only the IQNT processes themselves.

For more than a decade, nurses have been conducting

research on different patient profiles39-40,50-51 to monitor

complications on the use of EN. In a prospective cohort,52

157 ICU patients were followed daily during the first ten

days of hospitalization and, among those who received and

did not receive EN, complications such as diarrhea and the

need for gastric decompression were more frequent in the

EN group (39.7 % vs. 11.7 %, p < 0.001 and 34

% vs. 13.3%, p = 0.004, respectively). Therefore, it is

necessary to constantly reevaluate EN care practices, from

the evaluation of diet formulation, the characteristics of EN

administration, the correct positioning of the tube, and the

continuous infusion mode.53

Among the limitations of the present review are the search

only in the Portuguese language performed in Google

Scholar and the eligibility criteria of complete original

Pensar Enfermagem / v.27 n.01 / december 2023 | 127

DOI: 10.56732/pensarenf.v27i1.265

studies available online may have limited the number of

studies reviewed and/or included.

Conclusion

This study allowed us to analyze the evidence of the IQNT

“NT prescribed versus infused volume” in the hospitalized

adult cancer patient, revealing that in most studies, the

indicator’s goal was not reached, and that the patient has

clinical difficulties in achieving it. The quality of nutritional

care to this population stratum permeates the articulation

between nursing care and the analyzed indicator.

In short, the results of this review point to the aspects of

the IQNT “NT prescribed versus infused volume” in

hospitalized adult cancer patients that weaken their

adequacy, and reflections on nursing care that can be

performed in the hospital setting, to improve GPAEN,

assisting nurses in the development of skills necessary for

clinical decision-making. In addition, the evidence raised in

this study about the interface of nursing practices with the

investigated IQNT can contribute to the planning of

individual nutritional support throughout the disease,

promoting the importance of Nursing in the various

aspects of care for oncological patients using ENTs. New

research must be developed to evaluate, through the IQNT

“NT prescribed versus infused volume,” what institutional

difficulties contribute so that the oncological patient does

not receive the adequate volume of EN.

In addition, the IQNT “NT prescribed versus infused

volume” has been presented in the literature with different

results (sometimes percent, sometimes average), which

makes it difficult to compare them. Another question refers

to the studies that included in their sample patients with

other clinical conditions, not exclusively oncological, in

which, at times, it was not possible to fragment/select the

values of the indicator by disease, which may have indicated

a more significant negative impact on the results of the

IQNT investigated.

Authors’ contributions

L. S. E - Conception and design of the study; data collection;

data analysis and interpretation; statistical analysis; drafting

the manuscript; critical review of the manuscript.

B. S. S - Conception and design of the study; drafting the

manuscript; critical review of the manuscript.

M. C. S. A - Critical review of the manuscript.

J. B - Critical review of the manuscript.

B. S - Conception and design of the study; data collection;

data analysis and interpretation; statistical analysis; obtaining

funding; rafting the manuscript; critical review of the

manuscript.

Conflicts of interest

No conflict of interest has been declared by the authors.

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33. Macedo ABT, Assis MCS, Milioni KC, Canto DF,

Souza CMB, Chaves EHB. Elaboração e validação de um

protocolo para administração segura de nutrição enteral em

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from: https://doi.org/10.1590/19831447.2021.20200181

34. Bortolotto B, Beccaria LM, Oliveira KA, Faria JIL, et

al. Perda acidental de sonda nasogastroenteral para aporte

nutricional em uma instituição hospitalar. Cuid Enferm

[Internet]. 2020 [cited 2022 September 06];14(1):18-23.

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2020v1/p.18-23.pdf

35. Alhassan RK, Tsikata R, Tizaawaw RN, Tannor PS, et

al. Adherence to standard nursing protocols on nasogastric

tube feeding in a secondary referral hospital in Ghana:

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36. Kázmierczak-Siedlecka K, Skonieczna-Zydecka, K,

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37. Ferreira LEA, de Castro AL, Donoso MTV, Barbosa

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38. Abbade EB. Adoção de terapias nutricionais enteral e

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39. Bezerra GKA, Cabral PC. Nutrição enteral precoce em

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[Internet]. 2018 [cited 2022 September 18];33(4):446-40.

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40. Alves TP, Barbosa JM, Veras LN, Cabral NSG.

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ofertada ao paciente oncológico hospitalizado. BRASPEN

J [Internet]. 2019 [cited 2022 September 18];34(3):239-44.

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ago-set-2019/artigos/03-AvaliacaoDaQualidade.pdf

41. Villardo GP, Segadilha NLAL, Rocha EEM.

Adequação Proteica versus Estado Nutricional de

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9745.RBC.2018v64n4.201

42. Instituto Nacional do Câncer José Alencar Gomes da

Silva (INCA). Estimativa 2020: incidência de câncer no

Brasil. Rio de Janeiro: Ministério da Saúde [Internet]. 2019

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dia/document/estimativa-2020-incidencia-de-cancer-no-

brasil.pdf

43. Kim SH, Park CM, Seo JM, Choi M, Lee DS, Chang

DK, et al. The impact of implementation of an enteral

feeding protocol on the improvement of enteral nutrition

in critically ill adults. Asia Pac J Clin Nutr [Internet]. 2017

[cited 2022 September 18];26(1):27-35. Available from:

10.6133/apjcn.122015.01

44. Nguyen LT, Dang AK, Duong PT, Phan HBT, et al.

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45. Brasil. Resolução de Diretoria Colegiada - RDC N° 503,

de maio de 2021. Dispõe sobre os requisitos mínimos

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DF, Brasil [Internet]. 2021 [cited 2023 January 10].

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/rdc0503_27_05_2021.pdf

46. Orinovsky I, Raizman E. Improvement of nutritional

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47. Menezes NAB, Silva JT, Brito LC, Gois FN, Oliveira

CC. Adequação entre a terapia nutricional enteral prescrita

e a dieta administrada em pacientes críticos. Nutr clín diet

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49. de Souza IA, Bortoletto MM, Dias AMN, De Almeida

NM, Ribeiro LC, Mendonça EG. Nutrição enteral em

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administrado. Nutr. clín. diet. hosp. [Internet]. 2018 [cited

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GP, Beghetto MG. Simulação clínica: educação para equipe

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2023 January 10];35:e41998. Available from:

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51. Therrier S, Carlos CM, Costa RF, Simino GPR, Barbosa

JAG. Avaliação da nutrição enteral em unidades de terapia

intensiva. Rev Baiana Enferm [Internet]. 2021 [cited 2023

January 10]; 35:e38558. Available from:

10.18471/rbe.v35.38558

52. Batassini É, Assis MCS, Sousa GP, Beghetto MG.

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of gastrointestinal disorders in a cohort of critically ill

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53. Tatsumi H. Tolerância enteral em pacientes críticos. J

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| 131

Pensar Enfermagem / v.27 n.01 / November 2023

DOI: 10.56732/pensarenf.v27i1.277

Review Article

How to cite this article: Sousa IT, Bértolo MH. The role of grandparents in the transition to parenting: a

scoping review

. Pensar Enf [Internet]. 2023 Nov; 27(1):131-139

. Available from:

https://doi.org/10.56732/pensarenf.v27i1.277

The role of grandparents in the transition to

parenting: a scoping review

Abstract

Introduction

The transition to parenthood involves a set of intra and interpersonal changes, which affect

not only the woman and her partner, but also the entire family system. Grandparents are

highlighted as prominent figures in the contemporary family, constituting the main source

of support for the family in this process. Therefore, it is extremely important to understand

how grandparents can influence or not the transition to positive parenting, acting as

facilitating agents or as hinderances in this process.

Objective

To map the available scientific evidence regarding the role of grandparents in the transition

to parenthood of their children, encompassing the period of pregnancy, childbirth and the

postpartum period up to 3 years.

Methods

This scoping review was developed according to the methodology of the Joanna Briggs

Institute (JBI), 2020, with research carried out in April and May 2022 and updated in July

2023. Qualitative, quantitative or mixed studies were included, as well as review articles,

published in English and produced between 2015 and 2023.

This scoping review includes articles that address the role of grandparents in the context

of the transition to parenting of their children, including the time of pregnancy, childbirth

and the postpartum period up to 3 years.

Results

11 articles that met the inclusion criteria were included. Four categories emerged:

grandparents as a source of support; grandparents and their influence on family nutrition

and exclusive breastfeeding; the ambivalence of feelings and the role of health

professionals.

Conclusion

Grandparents can stand out as prominent elements of the family during the transition to

parenting of their children, developing instrumental, emotional, informational and financial

support roles; may influence exclusive breastfeeding and family nutrition. When concepts

and beliefs about fundamental aspects relating to children differ, ambivalent feelings can

arise and that lead to intergenerational conflicts. There is a gap in health care regarding the

inclusion of meaningful people in the care of the couple and the child, in this case the

grandparents.

Keywords

Grandparents; Role; Parenthood Transition; Pregnancy; Childbirth; Post-Partum

Inês Sousa1

orcid.org/0009-0000-6952-0758

Maria Helena Bértolo2

orcid.org/0000-0002-6612-2700

1 Master's student in Maternal and Obstetric Health

Nursing. Nursing School of Lisbon (ESEL), Lisbon,

Portugal.

2 Master.

Nursing Research, Innovation and

Development Centre of Lisbon (CIDNUR), Lisbon;

Nursing School of Lisbon (ESEL), Maternal Health

Department, Lisbon, Portugal.

Corresponding author:

Inês Sousa

E-mail: isousa@campus.esel.pt

Received: 20.04.2023

Accepted: 11.09.2023

132 | Sousa, I.

Review Article

Introduction

Parenting can be understood as one of the most demanding

and challenging aspects of a person's life. Becoming a

mother and father is an important milestone and can

simultaneously be a period of great joy, but also a stressful

life event.1 Thus, parenting can be understood as a set of

emotional bonds, knowledge, attitudes, and behaviors of

mothers and fathers, which is influenced by several factors,

such as previous experiences (from their own childhood),

personal and sociocultural circumstances, expectations and

beliefs.2 It is also influenced by the sense of personal

competence, marital relationship or the relationship

established with the other parent, the support network

(namely the family), available social services, as well as other

situations of inequality or vulnerability.2 The concept of

parenting therefore refers to the set of activities and

attitudes and the way of interacting in relationships with

children.3

According to Meleis4, the transition to parenthood is a

multidimensional concept that presupposes changes in

roles, definitions and redefinitions of the self and the very

transition, which is considered a passage or movement

from one state, condition or place to another.

The transition to parenthood is a complex process of

various physiological, psycho-emotional, social, and

cultural changes and adjustments. It is a demanding

process, characterized by constant learning, skill and

relationship development, and deep identity

reconstruction.5 Parental experience depends on parenting

strategies and responses, and these include cognitive

components of learning and decision-making, relational

components such as family support, and operational

components such as task sharing, routine reorganization,

and role reconciliation.5 Having support, whether

emotional or physical, can be seen as a crucial aid in this

process, decreasing the perception of stressful events, and

helping parents cope with them more effectively.6 Thus, the

nature of the transition to parenthood affects not only the

woman, but her partner, and the entire family system, and

in turn involves a set of intra- and interpersonal changes.

Dessen7 highlights grandparents as prominent figures in

the contemporary family, constituting the main source of

support and support for the family in this process,

promoting emotional, material and financial support.

Parents will be faced with a set of new and unexpected

situations for which experience, or lack thereof, does not

yet provide effective or convincing answers. At this point,

the support provided by grandparents, whether

instrumental or emotional, if provided properly, becomes a

protective factor in the adaptation of parents to the new

task that is required.8

To understand these transitions, it is essential to know the

structure and functions of the family support network,

since they vary according to the socio-cultural context, time

and stage of life of the individual and the family as a group.9

It is therefore extremely important to understand how

grandparents can influence or not the transition to

parenthood, acting as facilitators or barriers in this process.

Finally, and after consulting the JBI database, it was

confirmed that there is no scoping review on this topic,

which further accentuates its relevance. With that in mind,

the objective of this scoping review is to map the available

scientific evidence on the role of grandparents in the

transition to parenthood of their children, encompassing

the period of pregnancy, childbirth and the postpartum

period up to 3 years.

The research question of this scoping review is: what is the

role of grandparents in the transition to parenthood of their

children?

Methods

In order to guide this scoping review, a protocol was

developed, published on the Open Science Framework

(OSF) platform, with the identification

DOI 10.17605/OSF.IO/KJC2Y.

Inclusion Criteria

Population Type: This scoping review will include articles

addressing grandparents who have experienced the

transition to parenthood of their children and other

community members who have witnessed the experience

of grandparents transitioning to parenthood of their

children.

Concept: This scoping review will include articles that

address the role of grandparents who have experienced the

transition to parenthood of their children.

Background: This scoping review will include articles that

address the role of grandparents in the context of the

transition to child parenting, including the timing of

pregnancy, childbirth, and the postpartum period. The

postpartum period was considered up to 3 years after

delivery, since it is intended to cover the physical,

emotional, psychological, social and cultural developments

and adjustments that this transition comprises. This longer

period thus highlights the importance of considering the

transition to parenthood as a continuous, complex and

demanding process, promoting a more comprehensive and

holistic approach.

Types of information sources: This scoping review will

consider all studies of a qualitative, quantitative or mixed

nature, as well as review articles, published in Portuguese,

English or Spanish, that meet the inclusion criteria

described. Regarding the temporal issue, it is decided to

define as inclusion criteria the studies published in the last

8 years (2015 to 2023), with the purpose of gathering the

latest scientific evidence.

Research Strategy

The research strategy of this scoping review aims to identify

articles published in Portuguese, English or Spanish in the

last eight years that portray the role of grandparents in the

transition to parenthood of their children.

According to the strategy defined by JBI10, this was planned

in three distinct stages.

Pensar Enfermagem / v.27 n.01 / November 2023 | 133

DOI: 10.56732/pensarenf.v27i1.277

Review Article

As a first step, a search was carried out limited to the

CINAHL, MEDLINE databases, through the EBSCOhost

platform, and the Scopus database, to identify articles on

the subject. To this end, the keywords extracted from the

natural terms of the research question were used. Then, an

analysis of the words used in the titles and abstracts and the

identification of the indexed terms corresponding to each

database was carried out.

In this sense, a table was prepared referring to the

keywords, natural terms and respective indexed terms

(table 1), in order to organize the first stage.

Table 1 – Systematization of the inclusion criteria, natural terms and respective terms indexed in the CINAHL, MEDLINE

and Scopus databases

Keywords

Natural terms

CINAHL indexed terms

MEDLINE

Indexed terms

Scopus terms

Grandparents

Role

Transition to parenthood

Parenthood transition

Parenting transition

Childbirth

Pregnancy

Post

-partum

Childbirth

Pregnancy

Postnatal period

Parturition

Pregnancy

Parenthood transition

Parenting transition

Childbirth

Pregnancy

Post

-partum

In a second stage, a search was performed using all the

natural and indexed terms identified in table 1, in the

databases separately.

In the CINAHL database, a search of the natural terms as

well as the respective indexed terms was done, later

crossing with the Boolean operator OR. After aggregation

between the natural terms and the respective indexed

terms, a new search was carried out associating the results

obtained previously, with the Boolean operator AND. This

process is depicted in Appendix I and with the search

expression:

((grandparents OR (MM “Grandparents”) OR

“grandparents”)) AND ((role OR (MM “role+) OR

“role”)) AND ((parenthood transition OR parenting

transition OR “transition to parenthood” OR “parenting

transition”) OR (childbirth OR (MM “childbirth+”) OR

“childbirth”) OR (pregnancy OR (MM “Pregnancy+”) OR

“pregnancy”) OR (postpartum OR (MM “Postnatal

Period+”) OR “postpartum”)).

The same steps were followed in the MEDLINE database,

with the respective terms identified in Table 1. This process

is presented in Appendix II.

Regarding the Scopus database, only the natural terms were

searched, since this database does not present indexed

terms, crossing the terms childbirth, pregnancy and post-partum,

with the Boolean operator OR, as well as with the terms

parenthood transition and parenting transition and the remaining

terms with the Boolean operator AND. This process is

depicted in Appendix III.

Finally, in the third stage of the research strategy, an

analysis of the bibliographic references of the selected

articles was carried out, looking for more evidence,

especially primary evidence.

This survey was conducted between April and May 2022

and updated in July 2023, extending its time limit to 2023.

Study Selection

The articles found were analyzed by two independent

reviewers, taking into account the relevance of the title and

the abstract. Duplicates and those that did not meet the

previously defined inclusion criteria were removed.

Subsequently, the selected articles were fully analyzed

through full-text reading, meeting all the inclusion criteria,

and none were excluded. This step was also carried out by

two independent reviewers, and the disagreements between

them were resolved through discussion.

An article was integrated by analyzing the bibliographic

references of the previously selected articles.

Data extraction

A data extraction tool was built by an independent reviewer

as per JBI10 indications. This tool was tested in order to

ensure its clarity and accuracy of the extracted data. The

data of the selected articles were extracted using this tool.

Thus, the extracted data detail with clarity and specificity,

aspects about the phenomenon of interest, population,

objectives, study method and significant results for the

research question.

Data presentation

The data extracted from the selected articles are presented

in narrative form, as well as in a table (Appendix IV), which

organizes the studies according to the title, authors, year of

publication, country of origin, language, type of study,

objectives, sample and results relevant to the research

134 | Sousa, I.

Review Article

question. The discussion of results is elaborated in narrative

form.

Results

Search Results

The search in the three databases identified 63 articles. After

the duplicates were removed, 57 articles remained for

analysis of titles and abstracts according to the defined

inclusion criteria. At this stage, 47 articles were excluded

because they did not meet one or more inclusion criteria,

leaving 10 articles for full-text analysis. All 10 articles were

analyzed and none were excluded. The bibliographic

references of the 10 selected articles were also consulted and

another full-text article was integrated, in a total of 11

articles included in this scoping review. This process is

schematized in the Prisma diagram to which figure 1 refers.

Figure 1- PRISMA diagram: research results and selection of studies to be included in the scoping review. Adapted JBI.10

Characteristics of sources of evidence

The articles selected in this scoping review were published

between 2015 and 2023, and 72% (n=8) were published in

the last six years. They are all articles published in

international journals, such as the Journal of Family Issues

(n=1), Nursing Inquiry (n=1), Global Public Health (n=1),

Maternal & Child Nutrition (n=1), International Journal of

Childbirth Education (n=1), Midwifery (n=2),

Breastfeeding Review (n=1), BMC Pregnancy and

CINAHL COMPLETE: 20

MEDLINE COMPLETE: 36

Scopus: 7

(n=63)

Items removed before selection:

Duplicates (n=6)

Articles analyzed by title

(n=57)

Articles excluded by titles

(n=38)

Articles analyzed by abstracts

(n=19) Articles excluded by abstracts

(n=9)

Full-text articles analyzed for eligibility

(n=10)

Articles excluded in full-text

(n=0)

Articles included in the scoping review

(n=11)

Articles identified by bibliographic references

(n=1)

Articles identified in the databases

Identification

Selection

Inclusion

Pensar Enfermagem / v.27 n.01 / November 2023 | 135

DOI: 10.56732/pensarenf.v27i1.277

Review Article

Childbirth (n=1), Human Nature (n=2). All articles are

written in English. Two articles are from China, another

two from the United States of America (USA), followed by

Austria, Ghana, Colombia, New Zealand, Australia, France

and Namibia, with one article each. Four literature reviews

and seven primary studies with a qualitative or mixed

approach were then included.

The population of articles is diverse, including couples who

have been parents, grandparents, health professionals, as

well as community leaders.

Seven studies used in-depth semi-structured interviews as a

methodology and most studies aim to evaluate and explore

the experiences of parents and grandparents in the

transition to parenthood.

Review Results

In order to organize the results that emerged from the

research, we grouped them into four categories:

grandparents as a source of support; grandparents and the

influence on family nutrition and exclusive breastfeeding;

the ambivalence of feelings; and the role of health

professionals.

Grandparents as a source of support

Many grandparents play a vital role in the lives of pregnant

women or women/mothers and their grandchildren and

represent a source of support, whether instrumental,

emotional, informative or financial.6.11,12 Geographical

distance, culture, maternal and paternal relationship with

parents and in-laws, as well as the age of grandparents can

change the role that grandparents play and subsequently

change the influence they have on the parenting of

children. The interconnected nature of the different

generations can affect parenting styles, baby safety, as well

as parenting role performance.6

Grandmothers were identified as the main support of

pregnant women, providing them with information,

guidance and emotional support.11,12 Grandmothers are the

ones who have the role of preserving cultural traditions

related to this period, they are repositories of knowledge

about local medicine and decision-makers in health-seeking

behaviors, that is, they decide where childbirth takes place

and the need to resort to health services.11 In a study

conducted in an African country, Namibia,13 three domains

were identified in which grandmothers contribute, namely:

a) learning to be mothers, through representations of care

and examples, as well as information; b) support in

breastfeeding; and c) health and well-being in the postnatal

period. It is concluded that the informational, emotional

and instrumental support provided to mothers and their

newborns during the perinatal period can help establish the

mother-child bond, promote maternal energy balance and

improve the nutritional outcomes of babies.

The instrumental and emotional support provided by

grandparents, although dependent on the type of

relationship between parents and children, when not

intrusive, is a protective factor for the development of

maternal mental health problems in the first postpartum

year.14 Beneficial effects for the child are also reported, as

mothers without mental health problems are more

emotionally available and actively respond to the child's

needs.

Another article15 also mentions that the role of

grandparents is as a support network, taking care of both

mother and baby, preparing meals, and doing other

household chores. The role of grandparents also involves

the intergenerational transmission of roles, in which

mothers learn either by observation, advice or imitation of

care.

Grandparents and the influence on family nutrition

and exclusive breastfeeding

The culture of breastfeeding in a family plays a significant

role in supporting new mothers to breastfeed exclusively

and the practice of exclusive breastfeeding for six months

is not limited to the intentions or actions of the mother-

child dyad; it is a relational behavior influenced not only by

family networks around the mother, but also by cultural,

historical and social contexts.16

Grandmothers have the ability to influence exclusive

breastfeeding. A grandmother's positive opinion about

breastfeeding has the potential to influence a mother up to

12% to initiate breastfeeding.17,18 On the other hand, it can

also have a negative influence, having the ability to decrease

the likelihood of breastfeeding up to 70%.17 Wagner et al,18

suggest that mothers who were breastfed as infants were

more likely to initiate and continue breastfeeding than non-

breastfed mothers. The mother's mother and the mother's

previous breastfeeding experience have a strong influence

on breastfeeding practices. 18

Concha and Jovchelocitch,19 suggest that grandmothers

play a central role in the nutrition of many families during

the prepartum, postpartum, breastfeeding or

complementary feeding periods, namely in the preparation

of meals.

The ambivalence of feelings

Ambivalent feelings arise when the involvement of

grandparents in one or more domains, whether affective,

cognitive or behavioral, does not correspond to the wishes

and expectations of parents.12 This ambivalence also exists

when there are divergent views of parents and grandparents

in relation to concepts and convictions about pregnancy,

education, childcare, nutrition, or other fundamental

aspects in raising children. In the same study, these

ambivalent feelings also occurred when grandparents

questioned the roles and attitudes of parents and there were

critical judgments of grandparents about their parenting

abilities. Another aspect related to ambivalent feelings in

the involvement of grandparents is at the behavioral level,

when the grandparents do not respect the limits imposed

by the parents and, at the affective level, when it involves

disappointment with emotional aspects of the

136 | Sousa, I.

Review Article

relationships, namely feelings of competition between

parents and grandparents.12

A study conducted in China21 identifies that grandparents

are expected to support parents during the transition to

parenthood, even without parents asking for it. The study

mentions that, regarding postpartum and newborn care,

parents identify a significant gap between their beliefs and

those of their grandparents, noting that the approaches of

the older generation are outdated and unscientific. On the

other hand, the older generation believes they have the

experience of having children and the wisdom already

passed on for years. This discord creates family strife. The

study also identifies that parents appreciate the support

received by grandparents, for allowing time off from the

demands of care; however, they criticize them for

potentially causing harm to the baby, for their traditional

approaches. The same study also argues that clear and

direct communication leads to a better family relationship

and mutual understanding, rather than criticism. On the

other hand, there were conflicts whenever family members

expressed ineffective or non-existent communication and

insisted on doing it their way, which led to precarious family

relationships. If family members did not speak up and hide

their conflicts or communicate in a vague way, they were

more likely to trigger feelings of anger and silent aggression.

Families with well-established boundaries tend to have

more harmony in this transition period.15 Most of the

interviewed grandparents recognized their role and

boundaries and refrained from expressing their views on

parental decisions. In some families there was competition

among their members for control and, when this

competition was strong, conflicts arose. This study15 also

refers to generational limits, that is, the expectations of

perceived limits and rules of interaction of all family

members, involving the regulation of the behavior of

parents and grandparents. Clear boundaries require

grandparents to respect parental authority and avoid

offering too much advice regarding their parenting

decisions. Unwanted advice from grandparents is the most

ineffective form of communication and can be perceived as

a critique of parental care, affecting trust in one's own

parental skills.15 Thus, the involvement of grandparents in

the parental role can threaten the autonomy of parents and

may not be well received by them.

The role of healthcare professionals

Parents and grandparents attribute a relevant role to health

professionals as mediators of family conflicts.21 The former

claim that the latter are in a better position to mediate

family conflicts related to the clarification of roles, division

of tasks, communication and establishment of limits in the

puerperium and in the care of the newborn. The need for

knowledge and development of parental skills, the need for

information and education in the postpartum period and

psychological support for mothers are also identified.21

There is a potential gap between health education

campaigns that target mothers as autonomous decision-

makers and the reality of a more collectivist community

structure in which mothers rarely make these decisions

without the support of other community members.

Burgess6 argues that it is important for health professionals

preparing for childbirth and promoting adaptation to

parenting to recognize the role of grandparents and work

to assess their knowledge of current care practices and child

safety, including their role in caring for the baby. A

thorough evaluation will allow health professionals to

provide appropriate educational and support interventions

and resources for both parents and grandparents. The birth

of a new baby is not only an isolated experience for the

future mother, but also a transition for the grandparents.6

In this sense, the provision of support by health

professionals can improve self-efficacy, as well as the

growth of grandparents as individuals. As educators, they

should be mindful of what this transition can mean and

help families embrace the interconnectedness that the birth

of this new baby brings to all.13

Discussion

In the last eight years, 11 articles were found that identify

the various roles of grandparents in the transition to

parenthood of their children, thus providing an answer to

the research question initially formulated. This scoping

review therefore allows us to understand that grandparents

can play a vital role in the lives of children and their

grandchildren and represent a source of support, whether

instrumental, emotional, informative or financial,6,11,12 by

providing information and guidance.11 This informational,

emotional and instrumental support during the perinatal

period can help establish the parent-child bond, promote

maternal energy balance, improve child's nutritional

outcomes13 and improve maternal mental health.14

It is also identified the influence that grandmothers

represent in the nutrition of the whole family in the

perinatal period, namely in the preparation of meals,19 as

well as their influence on exclusive breastfeeding. We know

that breast milk is the best food for the baby until food

introduction and that it is exclusively recommended until 6

months of age;20 however, several factors contribute to

influence its practice. Thus, the practice of exclusive

breastfeeding during the first 6 months of the baby's life is

a relational behavior influenced by the mother's intentions,

family networks and cultural, historical and social

contexts.16 There is scientific evidence that corroborates

the ability of grandmothers to influence exclusive

breastfeeding.17,18 Although there are differences in the

type of breastfeeding outcome and how the influence of

grandmothers was measured, the overall effect on

breastfeeding was positive when the attitudes or

experiences of older female generations in relation to

breastfeeding were favorable. A grandmother's positive

opinion of breastfeeding had the potential to influence a

mother up to 12% to initiate breastfeeding. On the other

hand, a negative opinion has the ability to reduce the

probability of breastfeeding up to 70%.17 In this sense, it is

pertinent to allow and encourage the presence and

participation of grandmothers in the health care provided

Pensar Enfermagem / v.27 n.01 / November 2023 | 137

DOI: 10.56732/pensarenf.v27i1.277

Review Article

to pregnant women and parents, if desired, especially in the

perinatal period.

The ambivalence of parents' feelings towards their

grandparents was another aspect highlighted in this scoping

review. If, on the one hand, parents appreciate and

recognize the importance of grandparents' support in the

transition to parenthood, on the other hand, when there are

divergent views regarding concepts and convictions related

to children, through questioning parental attitudes and

roles and through critical judgment about their abilities,

there is an ambivalence of feelings, which can lead to

intergenerational conflicts.12,21 Clear and direct

communication leads to a better family relationship and

mutual understanding, to the detriment of criticism.21 On

the other hand, the most ineffective form of

communication translates into the unwanted advice of

grandparents, which can be perceived as a criticism of

parental care, affecting confidence in their own parental

skills.15 In this sense, health professionals can assume a role

as mediators of conflicts, through the clarification of points

of view, based on the latest scientific evidence. According

to a qualitative exploratory study,21 all participants

expressed the wish that health professionals could help

them, believing that they are in a better position to mediate

family conflicts.

Several articles also mention a gap in health care regarding

the inclusion of significant people in the care of women,

namely grandparents, who represent a crucial source of

support in the transition to parenthood.6,11,21 It is important

that health professionals, namely those who prepare for

childbirth and who promote adaptation to parenthood,

recognize the role of grandparents, making a complete

assessment, which will allow them to provide appropriate

care for both parents and grandparents, adopting a more

inclusive approach.

Conclusion

The various articles analyzed identified many roles that

grandparents can have in the transition to parenthood of

their children in the most different places in the world,

meeting the objective of this scoping review, as well as

answering the research question formulated. In addition to

identifying the roles of grandparents in the transition to

parenthood of their children, we also identified the possible

feelings and conflicts that may arise between them and their

children in this period, suggesting that it is through clear

and assertive communication that they can be resolved. It

also identified gaps in relation to health care and the

integration of grandparents into it, suggesting that health

professionals include grandparents in their approach to

care.

As nurses are one of the main providers of health care to

women and couples in the transition to parenthood, it is

important to incorporate the results of this scoping review,

in order to envisage a continuous improvement in the care

provided by them, in different contexts. Thus, the nurse

should involve significant people in the care process, also

integrating them as care clients and establishing

partnerships with them.

By understanding the different roles that grandparents can

play in the transition to parenthood, we will better

understand the importance of integrating them into the

health care of women/couples and children in this process.

However, this aspect implies an individual and personalized

evaluation, as each person is unique. We live in an

increasingly multicultural society with specific health care

needs. We emphasize as a strong point of this scoping

review, the multiculturalism of the various studies included,

allowing to broaden the vision of care and alerting to the

different perspectives and specificities of each individual as

a social, cultural and spiritual being. On the other hand, we

emphasize as limitations this same multiculturality of the

studies, which does not allow a generalization of the results;

as well as most of the selected studies focus only on

women/pregnant women and grandmothers in the

transition to parenthood. Although a vital role is

increasingly being attributed also to male figures in relation

to parenting, still today, in many cultures this is experienced

especially by the female gender. It is therefore important to

consider that sometimes couples may prefer to include

fathers, namely mothers, in their health process during the

transition to parenthood.

More research on this topic is considered necessary,

particularly in Portugal, in order to raise awareness among

health professionals, namely nurses, about the importance

of family integration in health care. Thus, future primary

studies are suggested in order to discover the Portuguese

reality of the role of grandparents in contemporary society.

Authors’ contributions

IS: Conception and design of the study; Collection of data;

Analysis and interpretation of data and Writing of the

manuscript.

HB: Data collection; Data analysis and interpretation;

Critical revision of the manuscript.

Conflicts of interest and Funding

No conflicts of interest were declared by the authors.

Sources of support / Financing

The study was not funded.

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| 139

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DOI: 10.56732/pensarenf.v27i1.280

Quantitative Original Article

How to cite this article: Tereso A, Lopes F, Guterres R, Bértolo H, Carvalhal L, Curado A. Effectiveness

of therapeutic showering in pain relief during the first stage of labor.

Pensar Enf [Internet]. 2023 Nov

;

27(1):

139-146. Available from: https://doi.org/10.56732/pensarenf.v27i1.280

Effectiveness of therapeutic showering in pain relief

during the first stage of labor

Abstract

Introduction

Pain prevention and effective control is emphasized as a priority for the obstetric unit’s

humanization. The therapeutic shower it’s an easy-to-deploy non-pharmacological

alternative whose effectiveness has not been recognized by nurses.

Objective

The aim of this study was to evaluate the effectiveness of therapeutic showering for pain

relief during the first stage of labor.

Methods

Quasi-experimental study with the following research question: Is the therapeutic shower

effective in relieving pain during the first stage of labor? Convenience sampling (n=81)

was used. Data were collected in the two maternity wards. Labor pain was assessed using

a Numeric Scale before water application as a comparative standard of pain level before

and after warm water application (immediately after, 10 and 20 minutes after). Data

analysis was performed using SPSS®, v.27.

Results

Repeated measurement ANOVA showed statistically significant results. Contrast analysis

between the first and second measurements revealed significant differences between the

mean level of pain immediately and 10 minutes after water application. However, post hoc

analysis revealed that after 20 minutes, the differences between the means were not

statistically significant.

Conclusion

Therapeutic showering is effective in pain reduction immediately and 10 minutes after

application.

Keywords

Hydrotherapy; Labor Pain; Pain Management; Pain Measurement.

Alexandra Tereso1

orcid.org/0000-0002-4746-3649

Filipa Lopes2

orcid.org/0000-0013-1676-9466

Rute Guterres3

orcid.org/0000-0001-9999-9499

Helena Bértolo4

orcid.org/0000-0002-6612-2700

Lucinda Carvalhal5

orcid.org/0009-0009-8940-8304

Alice Curado6

orcid.org/0000-0002-9942-7623

1 PhD. Maternal Health Department, Nursing School

of Lisbon (ESEL), Lisbon. Nursing Research,

Innovation and Development Centre of Lisbon

(CIDNUR), Lisbon, Portugal.

2 Master. Nursing School of Lisbon (ESEL), Lisbon.

Nursing Research, Innovation and Development

Centre of Lisbon (CIDNUR), Lisbon, Portugal.

3 Nursing degree. CHLO-Hospital de São Francisco

Xavier, Lisbon. Nursing School of Lisbon (ESEL),

Lisbon.

Nursing Research, Innovation and

Development Centre of Lisbon (CIDNUR), Lisbon,

Portugal.

4 Master. Maternal Health Department, Nursing School

of Lisbon (ESEL), Lisbon. Nursing Research,

Innovation and Development Centre of Lisbon

(CIDNUR), Lisbon, Portugal.

5 Nursing degree. CHLO-Hospital de São Francisco

Xavier, Lisbon. Nursing School of Lisbon (ESEL),

Lisbon.

Nursing Research, Innovation and

Development Centre of Lisbon (CIDNUR), Lisbon,

Portugal.

6 PhD. Nursing School of Lisbon (ESEL), Lisbon.

Nursing Research, Innovation and Development

Centre of Lisbon (CIDNUR), Lisbon, Portugal.

Corresponding author:

Alexandra Tereso

E-mail: alexandra.tereso@esel.pt

Received: 05.06.2023

Accepted: 14.10.2023

140 | Tereso, A.

Quantitative Original Article

Introduction

Pain can significantly influence the development of labor

and interfere with the decisions and satisfaction of women.

Anxiety and pain can be associated with longer labor, higher

levels of stress hormones, and greater use of

pharmacological analgesia.1-5 As privileged caregivers of

parturients, fetuses, and families, obstetric nurses can play

an essential role when considering pain as the fifth vital sign

and promoting the use of non-pharmacological strategies

for its relief.6

Providing non-pharmacological alternatives that facilitate

women's autonomy and decision-making in pain

management during labor can minimize fear and anxiety and

facilitate the release of hormones that favor the birthing

process.7 In the first stage of labor, several studies have

reported that conventional pharmacological approaches

may not be beneficial for the physiological evolution of

labor.8 Obstetric nurses can use their skills and contribute

objectively to prevent the unwanted effects of

pharmacological strategies, improve physical sensations, and

mitigate the psychological and emotional perception of pain

in parturients.9

Among existing non-pharmacological labor pain relief

alternatives, hydrotherapy (defined as the external

application of water for therapeutic purposes) has been

considered by several national and international institutions

as an option that can provide significant pain relief and

optimize the positive delivery experience of women, fetuses

and families.6, 9-12

In Portugal, the Board of the Obstetric and Maternal Health

Nursing Specialty College of the Council of Nursing9 has a

project called Maternity with Quality in which, one of the

indicators of the relevance of the project and measurement,

highlights the importance of promote and apply non-

pharmacological pain relief measures in labor and delivery.

The project maintains that the use of water during labor for

pain relief, in the first and second stages, promotes the well-

being of women and contributes to lowering the incidence

of episiotomies and cesarean deliveries. Two of the core

concepts of maternal health and obstetric nursing care are

woman-centered care and the promotion of normal

childbirth.13 In this context, making therapeutic showers

available to women and supporting them in decisions

regarding labor pain management can contribute to the

recognition of the role of women in childbirth and its

depathologization.14

The Portuguese Council of Nursing15 states that the

therapeutic use of warm showers results in a statistically

significant reduction in the use of epidural analgesia during

the dilation period and does not present adverse effects with

implications for the duration of labor, the rate of surgical

births, and neonatal well-being. Providing hydrotherapy in

Portuguese hospitals, in this case in the form of showers

with warm water, means providing women with an

empowering environment and instituting adequate care

policies that include non-pharmacological strategies for pain

relief in obstetric units. In this context, and taking into

account its beneficial effects, it is essential to encourage the

use of therapeutic showers, given how easy they are to apply

and that they do not require large investments in resources.

Despite the contributions mentioned above, in practice, the

use of showers is not widespread. Stark and Miller16

described some of the barriers to this implementation.

These authors consider it important to develop research on

such barriers, including strategies to overcome them.

Stark17 tested the effectiveness of therapeutic showering

during labor in a study with 32 parturients in active labor, in

which water was applied for 30 minutes. The study found

that in relation to the control group, there was a statistically

significant reduction in pain, and that therapeutic showering

was effective in reducing pain, discomfort, anxiety, and

tension, while improving relaxation and supporting labor.

Despite this evidence, in Portuguese maternity hospitals, the

use of hydrotherapy is far from widespread and often

neglected in relation to pharmacological strategies. If on the

one hand, material resources (in the case of immersion baths

or showering) are essential, on the other hand, producing

research and disseminating results about the effectiveness of

the strategy can help motivate nurses and develop evidence-

based practices.

Stark18 considered it important to distinguish therapeutic

showering from hygienic showering, which usually includes

active effort and movement to wash and cleanse.

Therapeutic showering is mainly passive, allowing the flow

of water to achieve the intended effect. Therapeutic reasons

for showering may include heating, cooling, humidifying,

relaxing, revitalizing, and massage, as well as pain relief.19 To

obtain the desired benefit of showering, exposure to a warm

shower requires more time than what is needed for hygienic

showering.

Although there have been some studies that evaluate the

effectiveness of hydrotherapy, the available scientific

evidence focuses on hydrotherapy performed with

immersion baths. In some countries, warm showers during

labor are commonly used, but have not been subjected to

scientific study and are not discussed.20 In this context, it is

necessary to assess its effectiveness to establish evidence-

based practice that promotes a healthier and more rewarding

childbirth experience.

The aim of this study was to evaluate the effectiveness of

therapeutic showering for pain relief during the first stage of

labor in Portuguese hospitals.

Methods

The methodological options chosen based on the nature of

the research problem and objectives are foundational to

ensuring the reliability and quality of research results. This

was a quasi-experimental study which investigated a

specific population, in this case, women who reported pain

in the first phase of labor, with the following research

question: Is the therapeutic shower effective in relieving

pain during the first stage of labor?

The evolution of pain levels was evaluated before applying

water vs. three times after water application (immediately

after, 10 minutes after, and 20 minutes after), in the pelvic

area, in the lower back, or in more than one location. Data

Pensar Enfermagem / v.27 n.01 / November 2023 | 141

DOI: 10.56732/pensarenf.v27i1.280

Quantitative Original Article

analysis was performed using the repeated measures

ANOVA. The assumptions were analyzed using the

Kolmogorov-Smirnov and Mauchly's tests21 which analyze

the normality of distributions and the sphericity of the

matrix of variances-covariances, respectively. The variable

"pain level" presented normal distribution in the first two

assessments after application, immediately after application

and 10 minutes after application, with p>0.05. The variable

"pain level", in the third application did not present normal

distribution, homogeneous variances, or zero covariances

(W=0.974; X2(2)=1.933; p=0.380), indicating sphericity.

Multiple comparisons were made using contrasts with the

first measurement (immediately after water application) as

a reference and conducting the Fisher's LSD post-hoc test.

The data were analyzed using IBM SPSS®, v. 27 (IBM

Corp., Armonk, N. Y., USA).

Participants

Sampling was non-random, accidental, casual or

convenient21 and included 81 observations (n=81).

Participants included all women in labor who met the

inclusion criteria: parturients in the first stage of labor who

verbalized pain; were 18 years old or older; had a low-risk

pregnancy, were at full term pregnancy, and had a single

fetus; and expressed an interest in participating. The study

established clinical criteria that guaranteed the safety of the

intervention and its evaluation. Ethical and legal

requirements for studies with human subjects were

followed, and participants signed free and informed

consent forms. Women who were submitted to other

pharmacological or non-pharmacological pain relief

strategies were excluded.

The study was conducted in two Portuguese maternity

wards (one in a public hospital and the other in a private

hospital) in Lisbon, between June 2018 and December

2021. It is worth emphasizing that the data collection

period was extended because of the restrictions imposed by

the SARS-CoV-2 pandemic in Portugal.

Risks/Benefits for participants

The intervention (therapeutic showering) did not imply

predictable risks for the parturients or fetuses. According

to the American College of Nurse-Midwives22, high-quality

research validates the use of hydrotherapy for pain relief

during labor, which does not increase risks for healthy

women during childbirth or neonates when evidence-based

clinical guidelines are followed. Obstetric nurses who were

caring for the parturients were responsible for verifying

their clinical conditions to ensure their safety. The use of

this strategy involved reorganizing spaces and equipment

to provide the necessary physical resources for access to

and application of therapeutic showers, to preserve the

privacy and intimacy of the participants, and to ensure

safety during the procedure, especially by preventing

sudden changes in water temperature and preventing falls.

The benefits for participants in this study were related to

pain relief as a result of the proposed intervention.

Data collection instrument

A two-part questionnaire was created for this study. The

first part gathered sociodemographic and obstetric

information about the participants and included the

following items: age, level of education, nationality,

obstetric index, location of prenatal care,

preparation/negotiation of a birth plan, attendance at

childbirth and parenthood preparation course, and whether

therapeutic showering was included in this course. The

second part included questions about the location of pain

(pelvis, lower back or more than one location), duration

and location of therapeutic shower application, and

assessment of pain level at four times (before the

intervention, immediately after, 10 minutes after, and 20

minutes after). An 11-point numerical scale was used to

assess pain. This scale consists of a ruler divided into eleven

equal parts, numbered sequentially from 0 (which

corresponds to no pain) to 10 (which corresponds to

maximum pain).23 The horizontal version of the ruler was

use. The pain intensity was always that reported by the

participants, and it was recorded by the obstetric nurses at

the different assessment times. All parturients received an

explanation about the scale using simple and accessible

language and confirmed that they had correctly understood

its meaning and how to use it.

Ethical aspects

This study was approved by the Health Ethics Committees

of the institutions involved (RNEC: 20170700050).

Informed consent forms were signed by all the participants,

who were told that they could withdraw their participation

at any time without any consequences and without having

to explain their reasons. The participants were also

informed that the data collected would be confidential,

coded and entered into a database for statistical analysis,

and would only be used for the purpose of this study.

Secrecy and anonymity were guaranteed, as well as privacy

and intimacy during the intervention. All procedures were

carried out in accordance with Declaration of Helsinki and

relevant guidelines and regulations.

Intervention

Therapeutic showering was the intervention. All potential

participants were informed about the intervention by the

obstetric nurses and asked about their availability to

participate in the study. In all situations, the evolution of

labor was assessed, and auscultation of the fetal heart

rate was performed before and after the intervention.

The participants were free to choose where to apply water,

and the nurses recorded where the water touched their

bodies. The duration of water application was recorded in

time intervals: less than 10 minutes, between 10 and 20

minutes, and more than 20 minutes. Warm water was made

available, and each parturient adjusted the temperature to

best suit their well-being and comfort.

142 | Tereso, A.

Quantitative Original Article

Results

The parturients who participated in this study were

between 18 and 45 years old, with a mean age of 30 years

(M=29.96) and a standard deviation of 6 (SD=5.54).

Regarding country of origin, 77% were Portuguese, 11%

Brazilian, 5% Cape Verdean, 4% Angolan, and the

remaining 3% were Australian, Italian, and Russian (1%

each). In terms of level of education, 50% had a higher

education degree (undergraduate degree 3%, graduate

degree 47%), 35% had studied up to year 10 and 12 of

secondary school, and the remaining participants, up to

year 4 of elementary school.

Of the participants, 69% were primiparous (first-time

parturients) and had not attended a childbirth preparation

course. The remaining 31% had attended a preparation

course, and 26% reported that the course had covered

hydrotherapy.

Pain was assessed before the intervention, to establish a

comparative level of pain before water application, and

after application (immediately after application, 10 minutes

after, and 20 minutes after) (Figure 1).

Figure 1 - Pain level distribution by location of pain [Mean+-2 Standard Error (SE)]

To analyze the mean pain levels at the different times after

water application, the mean value of pain before its

application was used as a baseline (Mean=6.85, SE=0.22).

Figure 2 shows that the average pain level decreased

immediately regardless of time after water application, with

a progressive increase at 10 and 20 minutes. However, the

water application time in minutes shows a greater

dispersion of data when it is less than 10 minutes and more

than 20 minutes, compared to the intermediate time

between 10 and 20 minutes.

Figure 2 - Distribution of pain level according to time after water application

Pensar Enfermagem / v.27 n.01 / November 2023 | 143

DOI: 10.56732/pensarenf.v27i1.280

Quantitative Original Article

The data for the three pain assessment times were also

analyzed in terms of location of water application (pelvis,

lower back, or more than one place).

As shown in Figure 1, increased pain levels (pelvic, lower

back, and in more than one location) occurred immediately

after the application of water, and at 10 and 20 minutes

post-intervention, although with greater data dispersion

when the pain was in the lower back.

The repeated measures ANOVA showed that the results

were statistically significant [F(2.10)=23.12; p<0.001;

η2p=0.236 and π = 0.878]. The contrast analysis between

the first measurement (before the water application) and

the other measurements showed no statistically significant

differences, with the exception of contrast analysis between

the first and second measurements that revealed significant

differences between mean level of pain assessed

immediately after water application and 10 minutes after

application [(F(1.5)=15.324, p<0.001, η2p= 0.170 and

π=0.972]. However, the post-hoc analysis revealed that

after 20 minutes, the differences between the means were

not significant (p>0.05).

Discussion

In most studies of the therapeutic application of water, a

large number of authors, are used as references or used in

the discussion of their results, have only investigated the

effect of hydrotherapy applied through immersion baths,

such as in Benfield et al.4, Simkin and Bolding20, Eckert et

al.24, Cluett et al.25, Silva et al.26 and Gallo et al.27 Of these,

Eckert et al.24 stands out because, unlike the others, it

concluded that immersion in warm water does not confer

any clear benefits to parturients and that when the water

temperature is above 37 °C, it can be harmful to the fetus.

When considering hydrotherapy for pain relief during

labor, it is important to highlight that therapeutic

showering has characteristics and contributions that differ

from those of immersion baths. Johnson et al.28 asserted

that women usually shower in upright positions, including

standing, rocking, swaying, squatting or sitting, and that

they can change their position in the shower to direct water

wherever it is needed to provide pain relief or a soothing

effect. Therefore, showering provides numerous benefits

during labor that are provided by movement as pain relief,

increased sense of self-efficacy, calming and comfort, and

perception of control over the environment and the

birthing experience.28

Stark18 also stated that therapeutic showering promotes and

facilitates physiological labor: the rhythmic impact of warm

water can provide a pleasant sensory distraction, the

shower allows freedom of movement, and showering

involves ambulation because of the necessary walking to

get into and out of the shower.

Gayeski et al.29 assessed the application of non-

pharmacologic methods to relieve pain during labor, from

the point of view of the primiparous women (n=188), on

the day they were discharged from the hospital. They found

that warm showers were the second-most-used non-

pharmacologic method (91.5%) (emotional support

provided by the parturients companion was the first

[97.3%]). In this context, it is also important to mention

that some authors consider that there is a shortage of

scientific evidence to support warm showers as a

therapeutic intervention. Of these, emphasis goes to

Simkin and O'hara30, and Stark18, who contend that while

showering is considered an effective coping strategy during

labor, research about it is lacking and its effectiveness has

not been tested.

Of the studies that assessed the effect of therapeutic

showering for pain relief during the first phase of labor, we

highlight the work of Davim et al.31, who observed

significant pain relief in parturients after the application of

water from a shower at room temperature, and a study

conducted by Barbieri et al.32 in which a warm shower with

water at 37ºC was used on the lower back region for 30

minutes, showing no significant difference in the pain score

evaluated before the intervention and 1 hour after. As

concluded by Barbieri et al.32, Stark in his study published

in 201318, highlighted that therapeutic showering did not

significantly reduce the perception of pain in participants.

In that study, the direction of the flow of the water and the

temperature of the water could be adjusted by the

parturients and, for safety reasons, they remained seated

during the procedure.18 Pain measurements were carried

out 10 minutes after the intervention. The author noted

that if pain had been measured before leaving the shower,

there might have been a more evident reduction and the

results could have been different.

A study by Santana et al.33 presented different results,

pointing to the benefits of therapeutic showering, and

concluding that, in the active phase of labor, a 20-minute

shower between 37 ºC and 39 ºC was effective in reducing

intensity of pain. Similarly, a 2017 study by Stark17

highlighted that after 30 minutes of therapeutic showering

(this length of time was selected based on research

conducted by Benfield et al.34, whose findings with

immersion baths showed significant changes after 15

minutes), the intervention group presented statistically

significant decreases in pain, discomfort, anxiety and

tension, and a significant increase in relaxation, and they

concluded that therapeutic showering was effective in

reducing pain.

Lee et al.8 found that average pain was less at 10 minutes

post-shower than at 20 minutes post-shower. Although

they did not evaluate pain immediately after water

application and did not record the location of pain or of

water application, they presented results similar to those

found in this study that pointed to the effectiveness of

therapeutic showering, at least at two times after

application. However, at the third time (20 minutes after

application), there was a decrease in its effectiveness. Lee et

al.8, who defined 37°C as the appropriate temperature for

the intervention for 20 minutes, affirmed that the

parturients in the intervention group, who were submitted

to warm showers, reported significantly lower scores on the

Visual Analog Scale for pain at 4cm and 7cm cervical

dilation, and better birth experiences than the control

144 | Tereso, A.

Quantitative Original Article

group. Regarding water application sites, after a 5 minute

full-body or lower-back shower, participants were

permitted to direct shower water anywhere that felt most

comfortable, although they did not record location of pain

or of water application after 5 minutes.

Despite the studies that mention only the beneficial effects

of therapeutic showering, it is also important to mention

research that does not corroborate these findings. Henrique

et al.1 and Cavalcanti et al.35 found an increase in pain scores

and a shorter labor duration in the group of participants

submitted to the intervention.

In terms of research developed to evaluate specific aspects

of therapeutic showering, namely temperature, duration of

application, and location of application, Hecox et al.36

argued that the effect of water for pain relief was greater

when the temperature varied between 37 °C and 40 °C and

was applied in 20-30minute sessions, and Lee et al.8

maintained that 37 °C was the ideal water temperature.

In the present study, the results showed that time after

application in minutes impacted level of pain. Although the

pattern for the three times was similar in the interval

between 10 and 20 minutes, there was a decrease in the level

of pain that was more pronounced immediately after water

application, and the results also seemed more consistent

because there was lower data dispersion.

Conclusions

Therapeutic showering is a non-pharmacological strategy

that, in the first stage of labor, contributes to safe but

temporary pain relief, with pain levels that are lower at the

time of application (pelvis, lower back and in more than

one place) and that increase over time at 10 and 20 minutes,

although with greater data dispersion when the pain was

located in the lower back region.

It is essential that the benefits of this strategy become

accessible to parturients as one of the dimensions of

humanized childbirth, and obstetric nurses should promote

the exercise of women's right to self-determination, which

includes free and informed decisions about non-

pharmacological pain relief strategies during the first stage

of labor.

This pain relief strategy does not require previous training

of women or a need for specific physical resources, since

most Portuguese maternity hospitals have warm water

showers available in the bathrooms that are accessible to

parturients. Nevertheless, it may have some impact on the

allocation of human resources, because it implies the

availability of nurses to accompany women during the

procedure, and there may be some limitations related to

personnel restrictions in the context of the SARS-CoV-2.

More research is needed about therapeutic showering that

allows it to be evaluated, not only in terms of its effect on

pain relief, but also on the evolution of labor and the

satisfaction of women and families. Producing and

disseminating such knowledge will increase the visibility of

therapeutic showering in obstetric nursing practice

guidelines, parenting preparation courses, and the

standardization of non-pharmacological pain relief

methods available in labor and delivery units in Portugal.

Considering that the results show an increase of pain over

time, and taking into account other studies that have

observed higher levels of pain when measurements were

not taken immediately post-intervention, it would be

interesting to always assess pain immediately after the

intervention and at shorter time intervals, namely 5 and 10

minutes.

Study limitations

Limitations of this study include the sample size, the type

of sampling, restrictions due to the SARS-CoV-2

pandemic, and lack of evaluation of shower water

temperature, since each participant regulated the

temperature based on their preferences.

Authors’ contributions

AT: Conception and design of the study; data collection;

data analysis and interpretation; statistical analysis; drafting

the manuscript; critical review of the manuscript.

FL: Conception ad design of the study; data collection.

RG: Conception ad design of the study; data collection.

HB: Conception ad design of the study; drafting the

manuscript; critical review of the manuscript.

LC: Conception ad design of the study; data collection.

AC: Conception and design of the study; data collection;

data analysis and interpretation; statistical analysis; drafting

the manuscript; critical review of the manuscript.

Conflicts of interest and Funding

The authors declare that they have no conflicts of interest

with respect to the authorship or publication of this article.

The authors state that the opinions expressed in this article

are their own and not from an official position of the

institutions or financial agent.

Acknowledgments

The authors thank the parturient women, who voluntarily

made themselves available to participate in this study, and

the nurses who made up the data collection team.

Sources of support / Financing

The authors declare there’s no funding.

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DOI: 10.56732/pensarenf.v27i1.276

Quantitative Original Article

)

How to cite this article: Rego R, Sousa E, Pinto F. Training hypocoagulated users and their families in

disease management: a community nursing intervention. Pensar Enf [Internet]. 2023

Oct; 27(1):147-152

Available from:

https://doi.org/10.56732/pensarenf.v27i1.276

Training hypocoagulated users and their families in

disease management: a community nursing

intervention

Abstract

Introduction

Brain and cardiovascular diseases require regular and specialized follow-up, including

pathologies that require oral anticoagulants, in order to reduce hospitalizations due to

clinical decompensation, maintain the person active, and reduce their degree of

dependence. This requires a professional/patient/family partnership in their management.

This project was based on Dorothea Orem's Self-Care Deficit Theory.

Objective

To train hypocoagulated users and their families in disease management.

Methods

The health planning methodology was applied. The situation diagnosis was developed using

questionnaires applied to the patient to validate their knowledge about disease management

and a second one applied to the family to understand their knowledge about their relative's

needs. The non-probability convenience sample was composed of 18 patients and five

family members in the consultations performed during the internship period.

Results

The situation diagnosis revealed a deficit of knowledge about disease management: in self-

care, therapeutic regimen, and their interaction, as well as a deficit of the family's role in

monitoring their family member and perceiving their needs. Health education was used as

a strategy to improve the problems identified through the empowerment of users and

families. After intervention, there was an increase in knowledge in all the addressed points:

self-care (92.85%), therapeutic regimen and its interaction (85.71%). As for the family

intervention, we found that participants are family members who live with hypocoagulated

patients and have already taken over the role of caregiver.

Conclusion

This project contributed to the knowledge of hypocoagulated patients and family, through

the intervention of community nursing, as well as the reflection on how to develop

strategies with families, to empower them in the early detection of intervention in the self-

care of their family member and in the management of family roles.

Keywords

Patients; Family; Oral Anticoagulants; Health education; Community nursing.

Rute Rego1

orcid.org/0000-0001-5074-2836

Edmundo Sousa2

orcid.org/0000-0003-2136-4471

Fátima Pinto3

1 Master. ACES Arrábida/USF Sesimbra, Sesimbra,

Portugal.

2 PhD. Lisbon Centre for Research, Innovation and

Development in Nursing (CINDUR)/ESEL, Lisbon,

Portugal.

3 Master. ACES Arrábida/USF São Filipe, Setúbal,

Portugal.

Corresponding author:

Rute Rego

E-mail: rute-rego@hotmail.com

Received: 19.04.2023

Accepted: 14.09.2023

148 | Rego, R.

Quantitative Original Article

Introduction

Cardiovascular diseases are the main cause of death in the

member states of the European Union, amounting to 36%

of deaths in 2010, as reported by the PNDCCV.1. Brain and

cardiovascular diseases require effective, specialized follow-

up during their management in order to reduce

hospitalizations due to clinical decompensation,

maintaining patients alive, and reducing their degree of

dependency. The cardiovascular diseases that require oral

anticoagulants (OAC) are included, which requires a more

regular health vigilance and a professional/user/family

partnership during disease management. There has been a

decrease in hospitalizations due to circulatory system

disease, 8.1% in 2016 in relation to 2011, and an increase in

hospitalizations due to cardiac arrest, 20.3% in 2016 in

relation to 2011.1

Community and public health nursing “Contribute to the

process of training groups and communities”2(p.8667),

promoting interventions through education-for-health

actions (EfH) in the community, doing follow-up with

families in their health project. This transforms them into

partners and decision-makers in their care with the aim of

improving quality of life and making gains in health. EfH,

as an intervention strategy, shall devise an interactive

process “focused on utilizing strategies that help

individuals and the community to either adopt or modify

behaviors that allow better health levels”.3(p.1) The literature

review shows the importance of EfH sessions in order to

train users in performing self-care and managing their

disease more safely and effectively.

This project was guided by the Otawa4(p.3,4) letter, int he

basic condition – Training “is centered on seeking equality

in health,” in order to contribute to reducing existing

inequalities; there must be “a solid implementation in a

favorable environment, access to information, lifestyles,

and opportunities that allow healthy options.” The

intervention focused on a community action in which

“health promotion is developed through concrete, effective

intervention in the community, establishing priorities,

making decisions, planning strategies, and implementing

them in order to achieve better health,” to build up

personal skills via access to information, EfH, thus

improving their self-care skills. Moreover, in the Dorothea

Orem's Self-Care Deficit Theory, whose premise is that

“every person has the potential, in different degrees, to take

care of themselves and the others who are under their

responsibility”5(p.614).

It must be understood that family is a complex system, with

a specific structure that is developed and transformed

throughout the life cycle according to one’s life

experiences. In this intervention community, it was found

that the participating families were in the last stage of the

life cycle, as stated by Figueiredo.6 This is a transformative

stage, as it helps understand the fragilities of those who

need care, as well as those who provide it. Thus, nursing

plays a key role in doing follow-up with families, identifying

transformations throughout the life cycle, providing

information, supporting them in their decision-making,

collaborating in strategies in order to maintain them trained

to perform self-care, managing their familial roles through

positive, effective, and efficacious communication.

This article aims to briefly expose a community

intervention project developed throughout an internship

that was part of the researcher’s master’s degree in nursing,

in the Community Nursing specialization area.

Methods

“Health planning must be adequate to reality, catering to

needs and/or problems experienced in the community or

any health organization in an assertive and pragmatic way,

supposedly in service for this community”.7(p.67) It was

through the health methodology planning that project

intervention was devised. All the formative and

interventional route of the community being followed-up

was described, analyzed and assessed according to several

development stages: situation diagnosis, priority

identification, goal setting, strategy selection, project and

program creation, execution and assessment preparation.

These stages allowed to steer a sustained, systematized

path, as this “requires a logical, rational methodology” .7(p.29)

This is a descriptive, exploratory study, devised after a

favorable opinion from the Ethics for Health Commission

with reference 6272/CES/2021.

Target Audience and Sample

This project target audience consisted in the users

registered at the FHU, amounting to a total of 52 users, as

per the following inclusion criteria: hypocoagulated

patients with need for INR, who received follow-up in

consultation throughout the internship period and were

able to understand, read and write well enough to answer a

questionnaire and accepted to participate in this project. Of

these, a total of 18 users were included in a nonprobability,

convenience sample.

Data Collection Instrument

To begin the first stage of the health planning methodology

– Situation Diagnosis, a questionnaire was devised and

validated by experts. A pre-test was carried out in order to

understand the hypocoagulated users’ and their families’

knowledge, which consisted in: Part A – sociodemographic

variables that enable us to understand the study sample;

Part B – motivational variables, which enable us to

understand commitment/knowledge of users regarding

their disease management, and Part C – socio-relational

variables, which enable us to analyze the user/nurse

relationship. To understand the family role of the

hypocoagulated user, the Dynamic Model of Family

Assessment and Intervention (MDAIF), operative matrix,

in its functional dimension, was applied on the users’

families who accompanied them in their hypocoagulation

nursing consultations in order to identify intervention areas

performed by their families as caregivers. The functional

dimension assesses the dependency of several types of self

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DOI: 10.56732/pensarenf.v27i1.276

Quantitative Original Article

care described by ICN (2002b): dressing, eating, drinking,

going to the bathroom, sleep-rest behavior, leisure and

physical activities, as well as knowledge about the

dependency on management of the therapeutic regimen,

self-vigilance, and self-administration of medicines, as

stated by Figueiredo.6(p.92) This helped assess the needs of

both family members and caregivers. Data collection was

carried out between October and November 2021 after

authorization from the Ethics for Healthcare Commission.

Results

The users’ ages in the sample vary between 55 and 88 years,

with an average of 73.61 years. It was found that 67% of

them are males, while 44% of them are females; of these,

67% completed basic education. Regarding family

households, it was found that 72% of the interviewees live

with their partners, 22% of them live with a relative, and

6% of them live alone.

Regarding disease knowledge, 100% of the interviewees

can identify the name of the prescribed medicine, while

72% can identify the therapeutic interval that is adequate

for them. However, 28% of the interviewees do not know

why they are taking anticoagulant medication. Regarding

medication interactions with OAC, 89% of the subjects

cannot identify medicines that may interfere with it, but

regarding food and health situations, 50% of them can give

some examples that may alter therapeutic value or even

foods that they might have to suspend. Finally, there is the

importance of the nursing consultation, in which 100% of

the interviewees refer that this is an accessible consultation,

and it is important for monitoring and surveillance of one’s

health state.

Graph 1 - Analysis of self-care dependency areas

Three relatives and a non-family-related caregiver answered

the family-focused questionnaire. It was found that the

hypocoagulated users present a dependency of several self-

care areas: Therapeutic Regimen Management, Self-Care

Physical Activity, Self-Care Leisure Activity and Self-Care

Hygiene, in which the caregiver, mostly a relative, takes

over these functions as their, as shown in graph 1.

Regarding use of the MDAIF operative matrix, there was

low family adherence to follow-up and supervision of

family member’s needs.

According to the results obtained in the health diagnosis

stage. Identification and preparation of nursing diagnoses

according to CIPE taxonomy, 2015 version: Deficit in

knowledge about the pathological process and their diet

regimen; Compromised self-care ability; Compromised

disease self-management; Compromised knowledge about

their families’ role; and Compromised relative’s ability to

manage the disease.

From Situation Diagnosis to Execution

After identifying the health problems and preparing

nursing diagnoses, their hierarchization was carried out.

Priority definition, the second phase of the health planning

methodology, was carried out by using a group of experts

as a resource and it was based on the analysis grid criteria,

which was adapted from Hartz.8 According to our results

and with a view to either minimize or solve the problems

we found, the first four priorities were focused: Deficit in

knowledge about their diet regimen; Compromised disease

management; Compromised relative’s ability to manage the

disease; and Deficit in knowledge about the pathological

process.

Based on the prioritized problems, the general and specific

objectives were set; setting objectives is the next stage,

which enables us to carry out the project so that “it is

possible to devise a path for intervention strategies (...)

from the current state of a certain community, what state

we intend to achieve, where and until when”7(p.23) Thus, the

main objective of this study is to train hypocoagulated users

and their families in disease management. The following

specific objectives were set: Identify foods that interfere

with OAC the most; Acknowledging danger situations for

users who take OAC; Relating danger situations with

actions to be taken in order to reduce risks; Support

families in identifying the areas where their family needs

support; and Understand the pathological process. Activity,

adherence, and quality indicators were set in order to

quantify and qualify the activities to be devised.

The fourth stage of the Health Planning Methodology –

Strategy Selection, whose function is “a set of specific

techniques, organized in order to achieve a certain

objective, thus resolving one or more health

0 0.5 1 1.5 2 2.5 3 3.5 4 4.5

Hygiene self-care

Dressing self-care

Eating self-care

Going to the bathroom self-care

Sleep-rest behavior self-care

Leisure activity self-care

Physical activity self-care

Therapeutic regimen management

Self-administration of medications

No Yes

150 | Rego, R.

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problems”.9(p.65) The following strategies were set according

to Dorothea Orem’s Self-Care Deficit Theory: Involving

the nursing team; presenting the project to the nursing

team; informal meetings with colleagues to maintain them

informed about project developments and ask for their

opinions. Information and Communication, participation

of the masters’ degree candidate in hypocoagulation

consultations to establish a relationship with users/family

and inform them about the project; Exposing information

at a visible location about the activities to be performed;

Information about the activities to be developed by

reinforcing it with their family nurses; Self-Care Promotion,

doing two EfH sessions at the FHU (Family Health Unit);

presenting a checklist to help register changes in patients’

daily well-being; presenting a pamphlet with a summary of

care measures to be taken so as to have good health;

Proximity of Nursing Care, making a manual of good

practices in nursing in on-line consultations. These

strategies aimed to provide a timely answer to the

difficulties pointed out by the users and their families.

Maintaining users able to self-care and improve

“performance or the practice of activities that individuals

carry out to their own benefit to maintain their lives, health

and well-being”10(p.84) is to make them autonomous

regarding their self-care.

The EfH sessions that were carried out aimed to promote

health in the community under intervention, facilitating its

development and improving knowledge about the disease.

As stated in the Ottawa (1986), “it is a process that aims to

increase the capacity of individuals and their communities

to control their health in order to improve it, understanding

health as (a resource for life and not as a life end.”8(p.160)

Assessment

After intervention execution, the project assessment was

carried out based on preset goals. The goals were set based

on the situation diagnosis. At the end of each EfH session

a checklist was used to assess the addressed themes. Thus,

the knowledge of users and families who participated in the

sessions regarding the themes addressed in the two

sessions, adding to the objectives and result indicators

defined for this intervention project, as exposed in Table 1.

Table 1 – Assessment of Prioritized Nursing Diagnoses applied to 14 participants, of which four are relatives who participated

in the two EfH sessions.

Nursing Diagnosis: Deficit in knowledge about their diet regimen

Result Indicator

Goal

Result

Percentage of users/family who received

intervention able to identify five foods that interfere

with OAC the most.

80% 85.71%

Nursing Diagnosis: Compromised disease self-management

Result Indicator

Goal

Result

Percentage of users/ family who received

intervention able to identify three danger situations.

Percentage of users/ family who received

intervention able to identify two actions to reduce

risk.

90% 92.85%

Nursing Diagnosis: Family’s knowledge about patients’ relatives’ ability to manage the disease is compromised.

Result Indicator

Goal

Result

Percentage of family who received intervention able

to identify three areas where their relative needs

support.

50% 100%

Nursing Diagnosis: Deficit in knowledge about their pathological process

Result Indicator

Goal

Result

Percentage of users/ family who received

intervention able to identify the reason for taking the

anticoagulant.

70% 92.85%

Table 1 shows that the proposed goals were achieved

despite the difficulties perceived in families’ adherence to

the project and motivation of all users who responded to

the questionnaire to participate in EfH sessions. The two

programmed sessions presented more user adherence

because the sessions had been carried out on the day of

their consultations, thus the number of participants was

smaller than that of questionnaire responders. It was found

that the users, who were mostly older persons, remain alone

during their vigilance and monitoring consultations in order

to maintain disease management within their physical and

mental abilities.

Discussion

This project aimed to strengthen mapping carried out via

scoping review. As stated by Madrid,12(p.463) “The education

level and patients’ knowledge have a direct influence on the

global management of the anticoagulation.”;

Alphonsa13(p.668) says that “Patient’s knowledge about OAT

was suboptimal.” The findings support the need for

educational interventions to improve the knowledge

regarding OAT and, thereby, achieve an appropriate and

safe secondary prevention of stroke.” Moreover, Viola,

Fekete and Csoka14(p.1265) say that “The lowest frequency of

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correct answers regarded the questions on drug interactions

(10.2%) and diet (11.4%).” There is also a need for

“(…)developing new strategies for patient education to

improve knowledge on the treatment with oral

anticoagulants.”. The questionnaires used in this project

found an older population (mode equal to 87 years of age),

with low education level (67% completed basic education),

where 28% of the sample is not able to justify why they take

OAC, and 78% of them do not acknowledge the

medication interaction; on the other hand, regarding the

foods that may interfere with it, 50% of them can identify

five foods. After intervention with this group, EfH showed

that new knowledge about the disease was acquired, along

with alert signals and actions to take in order to minimize

risk and promote self-care improvement. These sharing

moments, organized by the nurses who take care of this

community, create moments of great learning. Not only

does the target group participates actively in them, but also

raises questions and identifies difficulties to train

themselves in disease management. All articles highlight the

education factor as a key point for the users’ understanding

and participation in disease management, thus

demonstrating the importance of the EfH sessions and

how pertinent they are regarding user training. This is an

intervention area of the nursing community specialist,

where they must invest in these actions to improve health

literacy in the community and develop and document it

through clinical investigation. No articles written by

Nursing professionals were found in this intervention area.

Conclusion

The community intervention nursing specialists play a

central role in doing follow-up and guide the community in

managing their health project. EfH fostered moments of

learning and growth in order to improve the community’s

health state. By making use of on the health diagnosis and

the Dorothea Orem's Self-Care Deficit Theory and the

support-education system, it was possible to identify the

self-care deficiencies of the hypocoagulated users and their

families in disease management, as well as outline strategies

to train them in order to improve their self-care skills. The

EfS sessions made learning moments possible through the

users’ sharing knowledge and experiences, and a debate that

improved their skills regarding their disease, medication

and food interaction, as well as their identifying risk

situations and measures to be taken in order to minimize

risks and maintain a healthy, balanced life. The community

interventions that were carried out during this project were

very enriching due to the engagement of the whole

multidisciplinary team. This helped divulge information

and stimulate the users’ and their families’ participation,

thus, all together will improve health literacy in the

hypocoagulation area. However, we must focus on families

due to a difficulty we noticed in integrating them in

participating in the project and the health care intervention.

The families’ time availability difficulty was one of the

limitations we noticed in the intervention project. The

available internship time to make interventions with users

and their families is also minimal because only after a

favorable opinion from the ethics commission can we

interview and engage them in the project.

Making interventions in this community, improving their

self-care skills, engaging a multidisciplinary throughout

their route contributed to promote knowledge and develop

investigation in Nursing. However, other questions

emerged during community intervention. Noticing that this

community has a high percentage of older persons who

manage their health project on their own, led the team to

the following questions: How to make an early detection of

cognitive decline and intervene to promote better nursing

care? How to alert families to a new reality and intervene in

family readaptation in advance? How to support families in

rearranging functions or even taking over new roles?

Authors’ contributions

RR: Study conception and design; Data collection; Data

analysis and interpretation; Statistical analysis; Manuscript

writing.

ES: Study conception and design; Data analysis and

interpretation; Statistical analysis; Critical revision of the

manuscript.

FP: Data analysis and interpretation; Critical revision of the

manuscript.

Conflicts of interest and Funding

The authors declared that there is no conflict of interest.

References

1. Direção Geral da Saúde. Programa nacional para as

doenças cérebro cardiovasculares. Lisboa: DGS; 2017.

2. Regulamento nº 428/2018. Competências específicas

do enfermeiro especialista em Enfermagem

Comunitária. Diário da República 135, II Serie; 2018 jul

16:19354-19359 Disponível em:

https://dre.pt/application/conteudo/115698616.

3. Carvalho A, Carvalho G. Educação para a saúde:

Conceitos, práticas e necessidades de formação. Loures:

Lusociência; 2006.

4. OMS. Carta de Ottawa para a Promoção da Saúde. 1ª

Conferência Internacional sobre a Promoção da Saúde.

Canadá. 1986.

5. Vitor A, Lopes M, Araújo T. Teoria do déficit de

autocuidado: Análise da sua importância e

aplicabilidade na prática de enfermagem. Esc Anna

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6. Figueiredo M. Modelo dinâmico de avaliação e

intervenção familiar: Uma abordagem colaborativa em

enfermagem de família. Loures: Lusociência; 2012.

7. Nunes M. Cartilha metodológica do planeamento em

saúde e suas ferramentas de auxílio. Lisboa: Chiados

Editora; 2016.

8. Rodrigues F. A saúde planeada: Metodologia

colaborativa com a comunidade. Lisboa: Lisbon

International Press; 2021.

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pública. Lisboa: Lidel; 2020.

10. Imperatori E, Giraldes M. Metodologia do

planeamento em saúde: Manual para uso em serviços

centrais, regionais e locais. 3ª ed. Lisboa: ENSP; 1993.

11. George J. (Coord.). Teorias de enfermagem: Os

fundamentos à prática profissional. 4ª ed. Porto

Alegre: Artmed; 2000.

12. Hernández Madrid A, Potpara TS, Dagres N, et al.

Differences in attitude, education, and knowledge

about oral anticoagulation therapy among patients

with atrial fibrillation in Europe: result of a self-

assessment patient survey conducted by the

European Heart Rhythm Association. Europace

[Internet]. 2016 Mar; 18(3):463-7. doi:

10.1093/europace/euv448

13. Alphonsa A, Sharma KK, Sharma G, Bhatia R.

Knowledge regarding oral anticoagulation therapy

among patients with stroke and those at high risk of

thromboembolic events J. Stroke Cerebrovasc. Dis.

[Internet]. 2015 Mar; 24(3):668–72. Disponível em:

http://dx.doi.org/10.1016/j.jstrokecerebrovasdis.20

14.11.007 .

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)

How to cite this article: de Souza JB, Beckert RAT, Pilger KCP, Mafra SK, Rosario E, Ost KM, Moura V.

Hospitalization experiences: the perspective of individuals admitted to the medical clinic. Pensar Enf

[Internet]. 2023 De

c; 27(1):153-160. Available from: https://doi.org/10.56732/pensarenf.v27i1.268

Hospitalization experiences: the perspective of

individuals admitted to the medical clinic

Abstract

Introduction

Contemporary society is witnessing a population that struggles to look after their health

due to the relentless pace of their lives, consequently rendering them susceptible to the

experience of hospitalization. Within this context, individuals relinquish their autonomy

and are confronted with a plethora of reactions and emotions, requiring an individualized

and humane approach for a prompt and effective recovery.

Objective

To comprehend the lived experience of hospitalization, from the perspective of individuals

admitted to the medical clinic.

Methods

This is an exploratory study, with a qualitative approach, and draws upon partial data from

a matrix research project, rooted in the theoretical framework of Health Promotion. The

manuscript has been organized in adherence with the consolidated criteria for reporting

qualitative research (COREQ). It was conducted with a cohort of 15 inpatients from the

medical clinic department of a public hospital in the Southern region of Brazil. Data was

collected by the authors, using a semi-structured questionnaire, between September and

October 2021. Thematic content analysis was used to organize and interpret the data.

Results

Two categories emerged: the first highlighted the experiences lived during hospitalization.

While some participants felt secure and supported by the multi-professional team, others

perceived the hospital environment as a place associated with pain and suffering. The second

category emphasized the sentiment of longing experienced during hospitalization, such as

for spending time with family, friends, leisure activities, and daily routines.

Conclusion

The experience of the hospitalization process triggers feelings of security, vulnerability, and

longing. The importance of qualified professionals to facilitate moments of effective and

compassionate care within the hospital setting is evident.

Keywords

Hospitalization; Humanization of Care; Health Promotion; Nursing.

Jeane Barros de Souza1 (In Memoriam)

https://orcid.org/0000-0002-0512-9765

Richard Augusto Thomann Beckert2

https://orcid.org/0000-0002-3788-0991

Kelly Cristina de Prado Pilger3

https://orcid.org/0000-0002-5670-7799

Samantha Karoline Mafra4

https://orcid.org/0000-0002-3305-6516

Evelyn do Rosario5

https://orcid.org/0009-0003-2644-7476

Kasey Martins Ost6

https://orcid.org/0009-0007-5060-5728

Vitória de Moura7

https://orcid.org/0009-0008-2862-5340

1 Post-doctorate in Nursing, Universidade Federal da

Fronteira Sul, Chapecó/SC, Brazil.

2 Undergraduate Student in Nursing, Universidade

Federal da Fronteira Sul, Chapecó/SC, Brazil.

3 Undergraduate Student in Nursing, Universidade

Federal da Fronteira Sul, Chapecó/SC, Brazil.

4 Undergraduate Student in Nursing, Universidade

Federal da Fronteira Sul, Chapecó/SC, Brazil.

5 Undergraduate Student in Nursing, Universidade

Federal da Fronteira Sul, Chapecó/SC, Brazil.

6 Undergraduate Student in Nursing, Universidade

Federal da Fronteira Sul, Chapecó/SC, Brazil.

7 Undergraduate Student in Nursing, Universidade

Federal da Fronteira Sul, Chapecó/SC, Brazil.

Corresponding author

Vitória de Moura

E-mail: vitoriamoura16.rb@gmail.com

Received on: 19.03.2023

Approved on: 05.10.2023

154

| Moura, V.

Qualitative Original Article

Introduction

In contemporary times, people demand swift and effective

solutions, aiming to save time and accomplish numerous

tasks. To achieve this goal, individuals often resort to

various practices, some of which may be inadequate, such

as the consumption of ultra-processed foods and self-

medication to alleviate certain conditions. Such practices

seem to offer effective solutions at first glance. This results

in numerous long-term detriments, such as the marked

increase in chronic diseases, an alarming trend in society.1

Thus, it is evident that due to the fast-paced routine, many

individuals lack the time to indulge in leisure or to prioritize

and promote their health. Consequently, they fail to

contemplate the pleasures of daily life, such as freedom,

autonomy, and well-being, rendering daily existence even

more exhausting and demotivating,2 subjecting themselves

to the risk of illness and occasionally requiring

hospitalization.3

The hospitalization process can pose a threat to the

autonomy and social roles enacted prior to admission, as

the individual shifts from an active role to that of a patient,

relinquishing their independence, privacy, and interaction

with their support group.4 These circumstances can

provoke diverse reactions and feelings, given the

uniqueness of each individual; however, certain sentiments

are recurrent, including longing for home or family,

alongside the potential perception of the hospital

environment as an unpleasant place. Conversely, being

present in an environment that is reminiscent of pain,

suffering, and fear tends to evoke an appreciation for what

was experienced previously. Therefore, the individual,

vulnerable in this situation, requires a holistic, humanized,

and multi-professional approach to achieve a prompt and

satisfactory recovery.5

In this context, humanization emerges as a means to

preserve the basic rights of the hospitalized individual,

reinforcing the need for dignified and respectful treatment

while safeguarding their agency and autonomy.

Humanization in the healthcare domain has received a great

deal of attention in recent years, given the imperative of this

practice across all procedures and protocols. As a result, in

2003, the Brazilian Ministry of Health published the

National Humanization Policy (NHP) with the aim of

implementing the principles of the Brazilian Unified Health

System (SUS) in the routine of health services.

Furthermore, it is crucial to emphasize that the NHP is

applicable across all sectors, regardless of the level of

complexity, as it is grounded in the qualification of care.6

Therefore, to ensure humanization, it is imperative to

attend to the patient with a multidisciplinary team, with

professionals such as nurses, physicians, physiotherapists,

nutritionists, speech therapists, among others. Teamwork

is essential to guarantee more effective and higher-quality

care across all areas of healthcare services, especially in the

medical clinic, where patients are admitted with various and

sometimes impactful diagnoses, requiring more complex

procedures and treatments.7

It should be highlighted that multidisciplinary teamwork

can contribute to enhancing empathy among professionals,

making them more efficient and compassionate in

providing healthcare to the hospitalized individual and their

family. However, it is essential that collaborative efforts are

undertaken by all and not merely a subset of professionals

within a specific unit or sector.8 Additionally, nurses are

indispensable during the hospitalization process, as they

accompany the patient from admission to discharge, and

are responsible for managing the nursing team, which will

carry out all the care and procedures necessary to assist the

individual's health, ensuring their comfort and significantly

contributing to their recovery. Moreover, it is crucial to

attend to each patient in an integral and holistic manner,

continuously evaluating both the environment and the

individual, considering not only physical aspects but also

psychological, emotional, social, cultural, and spiritual

dimensions, ensuring greater well-being and quality in the

provision of healthcare.9-10

Furthermore, in line with humanized care, the principle of

comprehensiveness, which, along with others, underpins

the SUS in Brazil, is valued in the NHP and was further

emphasized in the National Health Promotion Policy

(NHPP). In the NHPP, comprehensiveness is defined as

the articulation and harmony among health services, as well

as the broadening of the workers' and health services'

listening capacities towards patients, considered universal

citizens deserving of care without prejudices or privileges.

This comprehensive approach is applied in the spheres of

health promotion, prevention, protection, and recovery.11

In this context, the Social Determinants of Health are

essential in healthcare, as they consider aspects of an

individual's life that extend beyond illness and the

biological body, such as work, the environment in which

the person lives, social, cultural, economic, ethnic, and

behavioral issues, among others.12

Health promotion, an essential aspect of the SUS and the

backdrop of the aforementioned policies, can be seen as a

promising strategy to produce health and address related

challenges. This notion was further emphasized in the

Ottawa Charter, a document born out of the First

International Conference on Health Promotion. The

charter defined health promotion as a process of

empowering individuals, communities, and society to have

greater control and autonomy, utilizing personal and social

resources, in pursuit of improvements in quality of life and

health.13-14

The Charter outlined five action areas which concern

healthy public policies, environments favorable to health,

community action, autonomy and development of personal

skills, and reorientation of health services in the light of

health promotion. The document emphasizes the

importance of collectively building health, self-care, and

caring for others. Specifically, it indicates that these items,

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in addition to holism, which is related to

comprehensiveness, and ecology, are indispensable for the

development and implementation of health promotion

strategies.13-14 The document also outlines commitments

for participating countries in pursuit of effective health

promotion. In Brazil, the NHPP highlights the five axes

derived from the Charter and aims to fulfill these

commitments related to the development of public policies,

equity, valuing the individual/community in their health-

disease process, the reorganization of health services to

achieve health promotion, among others.13,15

Based on the foregoing, the following research question

emerged: What is the experience of the hospitalization

process like from the perspective of individuals admitted to

the medical clinic? It is believed that by shedding light on

the demands of those experiencing hospitalization, it is

possible to reflect upon and implement strategies to qualify

healthcare assistance in the hospitalization process.

Moreover, considering the diversity of the population

served in the hospital network, both in terms of age and

culture, it is essential to perceive the factors involved in

recovery during this process, so as to make the hospital

environment more welcoming and pleasant. Therefore, the

objective of the study was to comprehend the experience

of the hospitalization process from the perspective of

individuals admitted to the medical clinic.

Methods

This is an exploratory study with a qualitative approach,

grounded in the theoretical assumptions of Health

Promotion. The manuscript was organized following the

consolidated criteria for reporting qualitative research

(COREQ).

The research took place in a referral public hospital in the

West of Santa Catarina, Brazil. Participants were 15

individuals, selected for convenience from those who met

the inclusion criteria: aged over 18 and hospitalized in the

medical clinic at the time of data collection. Lack of

physical and communicative aptitude to respond to

interview questions was the exclusion criterion. The

participants were intentionally selected, and all those

approached accepted to be part of the study.

Data collection was conducted through semi-structured

interviews carried out by the authors in the participants'

rooms, between September and October 2021. Each

interview had an average duration of 40 minutes and

followed a guide encompassing questions about the

experience of the hospitalization process and the feelings

evoked during the admission. All interviews were recorded

and subsequently transcribed into digital files.

Thematic content analysis was employed to organize and

interpret the data, which aims to uncover the central

significance that constitutes communication, prioritizing

interpretative approaches over statistical interference. In

the preliminary analysis stage, the transcribed data was

briefly skimmed to organize the content and define the

units of analysis. In the second stage of material

exploration, the data were coded to attain a comprehensive

understanding of the text. In the third stage, the data were

categorized and sub-categorized through classification and

interpretation.16 Two categories emerged from the analysis:

1) Experiencing hospitalization; 2) Longings evoked during

hospitalization, which will be discussed subsequently.

The study was approved by the Research Ethics Committee

of a public university in Santa Catarina, under opinion No.

4,960,473/2021, on September 9, 2021. It is emphasized

that, prior to data collection, all participants read and signed

the Informed Consent Form (ICF). To ensure anonymity,

the interviewees were labeled according to basic human

needs, based on the content of their testimonies. Hence,

the following pseudonyms were used: Food, Shelter, Rest,

Family, Friendship, Work, Self-esteem, Clothing, Health,

Hydration, Exercise, Safety, Spirituality, Sleep, Resilience.

Results

Participants' age ranged from 39 to 82 years, which

included four females and 11 males. The period of

hospitalization at the time of the interview varied from 2 to

30 days. In the first category, the interviewees reported that

they received adequate care and were well looked after

during their hospitalization. Additionally, they mentioned

that while at home, they experienced a feeling of impending

death, but upon receiving hospital care, they noticed an

improvement in their condition, which put them at ease.

"For me, it's good to be in the hospital. They are treating

me well, and I've already improved [...]” (Food)

"Now I'm fine, I feel better here. In fact, the doctor told

me I’d only be heading home tomorrow, and I felt at ease."

(Shelter)

"As I was at home [...] I thought I was going to die [...]

Being here in the hospital, I received all the care and I'm

fine [...]" (Rest)

The participants also discussed the administration of pain-

relief medications and the multi-professional work for

physical well-being in hospital care.

"...The medications are being administered correctly, so I

feel good." (Friendship)

"It's good because you don't feel pain, you're being taken

care of in the best possible way..." (Family).

"[...] The staff's visits can be entertaining, there are

physiotherapists, speech therapists, the whole team here,

the team of pharmacists, very good nurses, their care is very

good [...] It's clear, in these 6 days here, what good patient

treatment looks like [...]" (Work)

On the other hand, they revealed their dislike for the

hospital space, as it represents an environment visited

during illness, in a more serious state of health, leading

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them to associate hospitalization with something

unpleasant and a tiring period.

"It's bad because we're here all the time, lying down."

(Family)

"I don't like being in the hospital because whoever comes

here is because they're not well, they're sick, so it's bad."

(Self-esteem)

"Oh, it's tiring [...]" (Clothing)

In the second category - longings evoked during

hospitalization -, the interviewees mentioned missing the

comfort and routine of their lives at home, along with the

freedom experienced in their households, as the hospital

environment imposes various restrictions.

"I miss everything: my bed, the food. Everything is

different here. At home, we feel more at ease."

(Friendship)

"Oh, I like being at home, walking, having visitors over, and

now I have nothing here in the hospital." (Health)

"Oh, we miss home, of course, because it's freer there, there

are no restrictions. Here, everything is regulated, and if you

don't follow orders, you won't get better." (Food)

Hospitalization led the participants to miss being with their

families. Missed conversing with them, taking care of them,

and having them close, revealing their concern for them:

"My husband [is alone], I'm very worried about him."

(Hydration)

"I miss looking after my granddaughters [...], miss my

daughter. [...]" (Shelter)

"I miss my daughters and my mother." (Clothing)

Moreover, the interviewees mentioned feelings of longing

related to their contact with neighbors, friends, and

colleagues, as well as the work activities they engaged in

before hospitalization:

"[I miss] my neighbors because we used to visit [each

other]. I always took some time out for everyone, to help

people too, and now I've been here for almost 30 days."

(Family)

"Chatting with my colleagues, I miss that." (Exercise)

"Working, for sure, I miss it a lot [...]" (Family)

Additionally, the participants reported missing the leisure

moments that were part of their daily lives, in which they

set aside time to promote self-care, have fun, attend church

services, and experience the freedom of life.

"Going to the [beauty] salon, dressing up." (Safety)

"Oh, being free, drinking mate. I miss it very much..."

(Exercise)

"I wanted to be having a beer [...] and singing [...] That's

what we used to do, right?" (Rest)

"[...] I can't attend the worship service." (Health)

It was clear, in the interviewees' testimonies, the

deprivation of various significant aspects of their lives due

to the hospitalization period, as they expressed longing for

their routines, frequented environments, their families,

friends, and leisure activities. It became evident that the

hospital environment is perceived as a place that evokes

pain and suffering, as well as a space that provides security

and support due to the care routines performed by

the professionals.

Discussion

The hospital environment is complex and demands

knowledge and efficiency from professionals to provide

quality care. In this context, safety within the hospital

setting is essential. It contributes to minimizing harm

associated with health care to an acceptable level for the

institution. This consideration includes the infrastructure,

professionals' expertise, and material resources of the

respective health service.17

Medication management is crucial in this setting and

requires professional responsibility, which is tasked with

addressing doubts and treating each need individually to

provide comfort and well-being. It is known that the use of

medications is not limited to a therapeutic practice based

on the biomedical model. When used correctly and

rationally, they become important mechanisms for the

prevention, maintenance, and recovery of health, reducing

symptoms, and providing physical and mental well-being.18

Another critical element in the hospitalization process is

the promotion of a suitable and humanistic environment.

This encompasses the building's physical structure, which

is developed through architectural design. The design aims

to meet criteria for enhancing patient satisfaction and

comfort. This involves the implementation of

organizational methods that facilitate their stay and

integration within the hospital. The architectural design

aims to harmonize and seeks to meet the different realities

of the hospital setting, promoting well-being and creating

spaces that provide physical and psychological support to

patients, as the environment is essential to the quality of

care.19

Furthermore, hospital environments can induce stress and

tension. And sometimes, physical structures do not provide

the comfort of human sensitivity, attention, and care,

despite being an important aspect in the recovery of

patients. Humanizing the environment is significant, as it

contributes to improved patient experiences and outcomes.

This approach should be practiced in the training of

professionals, ensuring they develop effective strategies to

meet the individual needs of each person in a

comprehensive and humanized manner. This effort makes

each sector as welcoming and pleasant as possible for

patients, their families, and co-workers.20

Moreover, professional training and interdisciplinary work

are essential for promoting effective health care.21 Both

ensure greater resolution, shorter durations, and reduced

health spending, enabling comprehensive and humanized

care.9 As a tool for ensuring professional qualification,

continuing education is mentioned, encompassing

specialization and ongoing professional development,

along with permanent education, addressing work process

demands, aiming for more qualified health care.22 To

Pensar Enfermagem / v.27 n.01 / December 2023 |

157

DOI: 10.56732/pensarenf.v27i1.268

Qualitative Original Article

encourage multi-professional practice, there are residency

programs in this field, which combine theoretical-practical

knowledge with teamwork and intense insertion in health

services.23

Another critical consideration for professionals working in

the hospital environment is that, during the experience of

hospitalization, patients commonly feel longing, whether

for work, habitual activities as a means to occupy time and

ensure financial support, friends and family, or gatherings

for leisurely conversation and distraction. Furthermore,

there is the longing to attend religious centers, participating

in worship, and strengthening spirituality. Thus, longing

signifies the absence felt from what was experienced before

hospitalization.

Longing is understood as a human feeling that is difficult

to define and can symbolize the experience of pain or joy

related to the deprivation or distance from a beloved object

or person.24 Within the hospital environment, this

sentiment is common and can be evaluated to ascertain its

influence on the patient's treatment and recovery.4,25

These everyday activities that generate longing, when

restricted, can significantly impact the well-being of

hospitalized individuals, as they evoke feelings of

helplessness due to the loss of control over their own

bodies, as well as the inability to engage in daily activities,

along with feelings of anguish and anxiety resulting from

the disruption of routines, leisure moments, and contact

with family, all crucial for quality of life.26

Longing also arises from the hospital environment itself,

which typically evokes pain, suffering, and sadness, in

addition to subjecting patients to invasive procedures, the

loss of privacy, and autonomy. Therefore, it is essential that

each patient is seen as a unique individual, with a

comprehensive approach, considering each of their

statements, complaints, or feelings, in pursuit of an

effective and healthy recovery. Furthermore, through

dialogues with patients and attending to their complaints, it

is possible to improve the service, considering that they

benefit from daily care and are the most qualified to suggest

changes.4,25

To this end, the healthcare professional, especially in

nursing, plays an important role in ensuring a humanized

care that brings a sense of security and comfort in the

hospital setting.27 In addition to the safe administration of

medications, care in the hospital environment, and multi-

professional work, communication with patients promotes

a more welcoming space, as mentioned by the interviewees.

Communication enables moments of sharing knowledge

and feelings, strengthening the relationship and bond

between the professional and the patient. It is also

important for this bond to be established with the family

during the hospitalization period, as they provide important

support in increasing the patient's confidence and

security.28

Dialogue with the hospitalized patient helps them to

choose the most appropriate course of action for their

health condition, contributing to the reduction of hospital

stay, as well as pain and risks to their well-being.28 These

behaviors can make the hospital environment more

humanized, allowing for less uncomfortable experiences

for both patients and their families who also experience this

period. Therefore, it is essential that professionals can

provide care while striving to enhance communication

continually throughout the work process, thus reflecting

the provision of safe and quality care.27

Conclusion

Considering the above, it is possible to understand the

hospitalization process from the perspective of patients

admitted to the medical clinic, who experience moments of

satisfaction and security when they feel cared for.

Therefore, good care and a welcoming environment

directly impact their well-being, providing comfort, hope,

and significantly facilitating their recovery.

On the other hand, they feel vulnerable, mainly due to

sudden changes in their routine and being deprived from

carrying out their daily activities, relying on the help and

care of the multi-professional team and others. This

situation is related to the perception of the hospital as a

place of suffering, anguish, restrictions, which evokes

longing for family, home, work, friends, and leisure

activities.

Thus, the significant importance of the multi-professional

work by professionals aligned with the principles of

comprehensive care becomes evident, willing to implement

new care strategies in the hospital environment. This

approach is essential to promote a humanized, qualified,

and efficient service, considering the needs and

individualities of each individual, recognizing all aspects of

the patient's life rather than just the illness. These aspects

will broaden the possibilities for effective recovery and

make hospitalization more bearable for the patient and

their family.

Among the limitations of the study is the focus on people

hospitalized in the hospital's medical clinic, most of whom

were living with chronic health conditions. The focus on

this cohort excluded other units of hospitalization, such as

the surgical clinic, which receives many people with acute

health conditions requiring other interventions. As a

contribution, the study demonstrates some of the feelings

experienced by hospitalized individuals regarding their own

condition, their stay in the hospital, and the multi-

professional team, providing insight into possibilities for

health promotion in situations such as the one presented

here. It also contributes to the development of a holistic

perspective in health care, seeking to address more unique

and individual patient concerns and needs. It emphasizes

the importance of hospital ambiance, as well as

158

| Moura, V.

Qualitative Original Article

contributing to the discussion of multi-professional work

in health and comprehensive care, all important aspects of

the NHP and the NHPP.

Authors’ contributions

JBS: Conception and design of the study; drafting the

manuscript; critical review of the manuscript.

RATB: Conception and design of the study; data analysis

and interpretation; drafting the manuscript; critical review of

the manuscript.

KCPP: Conception and design of the study; data analysis

and interpretation; drafting the manuscript; critical review of

the manuscript.

SKM: Conception and design of the study; data analysis and

interpretation; drafting the manuscript; critical review of the

manuscript.

ER: Conception and design of the study; drafting the

manuscript; critical review of the manuscript.

KMO: Conception and design of the study; drafting the

manuscript; critical review of the manuscript.

VM: Conception and design of the study; drafting the

manuscript; critical review of the manuscript.

Conflicts of interest and funding

The authors declare that there is no conflict of interest.

The authors declare that there was no funding.

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