| 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]. 2023 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 Sousa
1
orcid.org/0000-0002-6577-4344
Maria Alice dos Santos Curado
2
orcid.org/0000-0002-9942-7623
1
MSN, RN. North Lisbon University Hospital Centre,
Santa Maria Hospital, Neonatal Intensive Care Unit.
Nursing Research, Innovation and Development
Centre of Lisbon (CIDNUR).
2
PHD, 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 family
3,4
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 inconsistent
7–9
, 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 checklist
16
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
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 instrument
15
, 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)
1
st
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
of
consensus
Inadequate environment;
lack of privacy; absence
of
protocols
Semi-structured
interviews
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DOI: 10.56732/pensarenf.v27i1.200
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, and
3,20–22
attitudes
23–26
of
nurses towards the implementation of neonatal palliative
care and the challenges
24,27
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
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 opinions
24
(n=1), the National Survey of
NICU Nurses' Perceptions of End-of-Life Care
7
(n=1) and the
Neonatal Palliative Care Attitude Scale - NiPCAS
12,20,25,31
(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 - NiPCAS
11
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 countries
12,25,31,33,34
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 curricula
37
, health services and
institutions
27
should promote PC training at different levels
and create a culture that promotes and supports the
philosophy of PC
3,9,38
, 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
recommendations
39
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 parents
40
, 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 team
22
, 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 obstacle
27,36
, 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 continued
22,27,36,38,41
, 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 realistic
7
, and
parents should be incorporated into the definition of the
anticipatory care plan
4,30,34
, 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 privacy
3,7,23,25
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 NPC
42,43
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 NPC
3,9,17,41,44
, promoting
inconsistency of care and increased stress for parents and
health team. The lack of guidelines, protocols or
organizational policies
9,21,22,24,26
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-life
7,17,19,30,35,44
, relates
PC with dying and death. This relationship between PC and
death promotes ethical dilemmas and moral distress in
nurses
27
, since they experience feelings of personal failure
37
in the face of death and parents' expectations and
demands
27,34,38,41
, 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 conditions
45
, 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.
Pensar Enfermagem / v.27 n.01 / march 2023 | 13
DOI: 10.56732/pensarenf.v27i1.200
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