| 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 (A‐
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 A‐FROM 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
MEDLINE
PSYCHOLOGY AND
BEHAVIORAL SCIENCES
COLLECTION
SCOPUS
(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))
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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
Figure 1 - PRISMA 2020 flow chart15
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
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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;
- Loss 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.”
- Process 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
supportS3;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 aphasiaS3;S6;S8.
LANGUAGE AND
RELATED
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 servicesS1;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; spiritualityS2;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
opinionsS1;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 aphasiaS2;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 worldS2;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 participationS5;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 aphasiaS2;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 moodS3;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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