Disability and Rehabilitation

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The experience of occupational identity disruption

post stroke: a systematic review and meta-
ethnography

Maria M. Martin-Saez & Neil James

To cite this article: Maria M. Martin-Saez & Neil James (2019): The experience of occupational
identity disruption post stroke: a systematic review and meta-ethnography, Disability and
Rehabilitation, DOI: 10.1080/09638288.2019.1645889

To link to this article: https://doi.org/10.1080/09638288.2019.1645889

Published online: 02 Aug 2019.

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DISABILITY AND REHABILITATION
https://doi.org/10.1080/09638288.2019.1645889

ORIGINAL ARTICLE

The experience of occupational identity disruption post stroke: a systematic

review and meta-ethnography
Maria M. Martin-Saeza and Neil Jamesb
a
Occupational Therapy Department, Cambridge University Hospitals NHS Foundation Trust, Cambridge, UK; bSchool of Health Sciences,
University of East Anglia, Norwich, UK

ABSTRACT ARTICLE HISTORY

Purpose: After a stroke, most individuals cannot participate in some of their valued occupations, disrupt- Received 21 October 2018
ing their occupational identity. The aim of this interpretive synthesis is to systematically review the exist- Revised 15 July 2019
ing body of research to develop an understanding of the experience of occupational identity disruption Accepted 16 July 2019
post-stroke.
KEYWORDS
Methods: A systematic review of the literature that included nine electronic databases, reference lists Occupations; stroke;
screening and grey literature checking was completed. Ten studies published between January 2012 and occupational therapy;
October 2018 were included. Meta-ethnography was used for the interpretive synthesis. rehabilitation; self-concept;
Findings: A three-staged process model was created. Stage 1 illustrates the four factors involved in occu- adjustment disorders;
pational identity disruption: “A fragmented and externalized body”, “losing control, freedom and identity continuity
independence”, “changed social and familial interactions”, and “occupational participation loss”. Stage
two explains the experience of occupational identity disruption: “Occupational identity loss”, “a de-valued
self”, and “threat to identity continuity”. Stage three shows the individual’s coping strategies: “protecting
one’s self”, “social isolation”, and “re-inventing one’s occupational self”.
Conclusions: Stroke impacts on an individual’s occupational identity, compromising the continuity of a
stroke survivor’s sense of self. However, occupational identity is fluid; this can be used to support individ-
uals to re-invent the occupational self. A conceptual model was developed to support the application of
these results in clinical practice.

ä IMPLICATIONS FOR REHABILITATION

Occupational identity disruption impacts on stroke survivors’ self-value and sense of self continuity.

Health care professionals’ understanding of stroke survivors experience of occupational identity dis-
ruption could contribute to realign stroke survivors and clinicians’ rehabilitation goals.

Occupational participation and social interaction should be core aspects of stroke rehabilitation.

Occupation-focus rehabilitation could provide opportunities for stroke survivors to pursue their
desired occupational identity.

Introduction Self-identity is recognized as being a comprehensive concept

Stroke is the third most common cause of disability in the world
[1] and could be considered the largest cause of complex disabil-
ity in adults [2]. The World Health Organization [3] defines disabil-
ity as covering three aspects: impairments in body functions,
activity limitation, and participation restrictions. A stroke can
impact on all three of these aspects and can be experienced as a
life-changing event requiring intensive rehabilitation to enable
ongoing participation in meaningful occupations.
Rehabilitation services are dominated across the stroke care
pathway by the biomedical model of illness. In that, it centres on
treating the stroke as a body dysfunction with little attention
given to disability [4] and minimal intervention focused on partici-
pation. Rehabilitation programs are therefore defined in relation
to physical recovery [5] and directed by improvement in the phys-
ical and cognitive areas with only a marginal component focused
on rebuilding an individual’s self-identity [6]. It is not surprising
that stroke survivors feel that clinicians’ goals do not correspond
with their own [7–9].
describing the uniqueness of a person [10] and can be under-
stood as “that active and dynamic understanding of self which
people derive from interactions between themselves and their
environments” [11, p. 45]. Occupational identity is a component
of personal identity [12] and has a more specific nature than the
wider concept of self-identity [6]. Similarly to the identity defin-
ition by Bernd [11], occupational identity is practically built in
everyday ways [13] and is influenced by the environments in
which occupations take place.
According to Kielhofner [14, p. 106], occupational identity is “a
composite sense of who one is and wishes to become as an occu-
pational being generated from one’s history of occupational par-
ticipation”. Occupational participation therefore refers to
engagement in employment, leisure, or daily living activities that
are part of one’s sociocultural environment and that are desired
and/or needed for one’s well-being. Occupational identity is the
actively constructed knowledge about who one is that is mod-
elled by what one does. It is a dimension of the main construct

CONTACT Maria M. Martin-Saez maria.martinsaez1@nhs.net Occupational Therapy Department, Cambridge University Hospitals NHS Foundation Trust, Hills
Road, Cambridge CB2 0QQ, UK
ß 2019 Informa UK Limited, trading as Taylor & Francis Group
2 M. M. MARTIN-SAEZ AND N. JAMES
of self-identity and contributes to one’s self-concept. It is
expected, therefore, that a stroke will have an important impact
on occupational identity. Limitations to occupational participation
imposed by the stroke syndrome, combined with an often chal-
lenging physical, social, cultural, political, and economic environ-
ment, are likely to influence the perception of oneself as an
occupational being.
While it is well recognized in the literature that stroke influen-
ces an individual’s identity [15] and ability to participate in occu-
pations [5], the relationship between identity and occupation has
only recently been explored; the result is that a reciprocal and
multifaceted association between occupation and identity is now
evidenced [16]. These studies have investigated constructs that
have an intimate relationship with occupational identity from the
perspective of stroke survivors, such as occupational adaptation
[17], occupational gaps [18], or role performance and sense of self
[19]. Other studies have explored occupational identity recon-
struction in individuals with medical conditions other than stroke
[20,21]. Hole et al. [22] studied how stroke rehabilitation trans-
formed stroke survivors’ identity; unsurprisingly, occupational par-
ticipation was highlighted as an essential factor supporting the
notion that occupational identity is a central dimension of an
individual’s sense of self post-stroke.
Nevertheless, this growing body of evidence only partially
addresses occupational identity and the centrality that this has in
one’s construction of a self-concept. Significantly, very little is
known about the process of occupational identity disruption from
the perspective of stroke survivors. For health care professionals,
understanding the experience of each individual as “doer” in her/
his own world is essential to meet individuals’ wishes and needs
in rehabilitation from an occupational perspective [9].
Accordingly, the aim of this study was to systematically review
the existing body of research to develop an understanding of the
experience of occupational identity disruption post-stroke.
Materials and methods
Design
A systematic review of the literature and interpretive synthesis
was conducted using the meta-ethnography method described
by Noblit and Hare [23] that has been reviewed by France et al.
[24,25]. This systematic review was registered with the
International Prospective Register of Systematic Reviews
(PROSPERO: CRD42017067506). Studies that addressed occupa-
tional identity disruption post-stroke, even if only addressing the
subject partially, were amalgamated and reinterpreted in an
interpretive synthesis.
Meta-ethnography, the chosen methodology for data analysis
of this interpretive synthesis, incorporates processes designed to
preserve the meaning of the papers synthesized. This is unique to
this approach [24] and essential when synthesizing studies with
different aims. In addition, meta-ethnography is an appropriate
method to produce conceptual models and new theories [24],
which was the purpose of this interpretive synthesis.
By going beyond individual reports about occupational iden-
tity disruption post-stroke and re-conceptualizing the findings, a
higher level conceptual framework was created, to better under-
stand a phenomenon of high relevance in stroke rehabilitation.
Similarly to Fallahpour et al. [26], the psychological perspective
often used to analyse identity change post-stroke was trans-
formed into an occupational perspective, focusing on the daily
occupational experiences of the participants, to create a concep-
tual framework supported by occupational sciences [27].
Search strategy
Studies were identified through systematic searches of nine data-
bases (see PRISMA flow diagram in Figure 1) [28], using a mixture
of free-text terms and subject headings (see search strategy in
Table 1).
Two grey literature databases – Open Grey and EThOS – were
searched. Consultation with experts in the field and reference list
review of papers considered for full-text assessment completed
the search. Some limits were applied to the search strategy and
only papers written in the English language and published in the
last 5 years (2012–2018) were included since the findings of this
interpretive synthesis needed to be based on the latest evidence.
The systematic search was re-run in October 2018 and one new
study was identified [9]. This study focussed on the re-construc-
tion of occupational identity post-stroke rather than the process
of disruption. Their proposed model of re-establishing occupa-
tional identity post-stroke is discussed in the Conclusions section.
The first author carried out the systematic literature search that
was reviewed by the second author, who is an experienced quali-
tative researcher.
Inclusion and exclusion criteria
Inclusion/exclusion criteria were used to select relevant papers.
Papers reporting qualitative empirical studies using accepted
qualitative methods published in peer reviewed journals were
included in the synthesis. Only papers that explored occupational
identity disruption from the perspective of those who had experi-
enced a stroke were included. Papers published from 01 January
2012 to date and written in the English language were eligible.
Papers that focus 50% of their finding on occupational identity
disruption for stroke were included.
Papers reporting on quantitative, mixed methods studies, inter-
pretive synthesis, and non-empirical studies were excluded.
Studies that included patients with diagnosis other than stroke or
the perspective of carers or relatives were rejected.
Quality assessment
The Critical Appraisal Skills Programme (CASP), Qualitative
Checklist [29] is a widely used tool [30] commonly utilized in
meta-ethnographic studies [31,32] to assess quality. To ensure the
selected studies met minimum quality standards to be included
in the synthesis, the authors critically appraised each study report
using the CASP Qualitative Checklist.
Table 2 describes the performance of the selected studies in
CASP. All studies were critically appraised by the first author and
one third of the studies were also reviewed by the second author.
Disagreements were resolved by discussion and careful examin-
ation of the study reports.
Overall, the 10 selected papers were evaluated as having good
methodological quality. All study reports provided a good ration-
ale for conducting the studies, their findings were clearly linked
to the research questions and backed with participant quotes. All
papers demonstrated credibility and were conducted following
ethically sound methods. No papers were excluded from the inter-
pretive synthesis due to methodological weakness or were given
different weighting in the findings of this interpretive synthesis.
Data extraction
Studies were carefully and repeatedly reviewed to identify the key
metaphors and concepts expressed within each individual study,
 OCCUPATIONAL IDENTITY DISRUPTION POST-STROKE 3

Figure 1. PRISMA flow diagram.

Table 1. Search strategy.

1. Stroke OR "cerebrovascular accident" OR "cerebrovascular insult" OR “cerebrovascular disorders” OR CVA OR post-stroke OR “brain ischemia” OR "ischemic
accident" OR "cerebral ischemia" OR "lacunar infarct" OR “cerebral infarct” OR "cerebral hamorrhage" OR "cerebral bleed" OR “intracranial hamorrhage”
OR “intracranial bleed” OR “brain hematoma” OR “brain haematoma” OR “brain thrombosis” OR “brain embolism”
2. (Brain or cerebral or intracerebral or intracranial or parenchymal) ADJ5 (haemorrhage OR hemorrhage OR hematoma or hematoma)
3. Stroke (MeSH term)
4. Cerebral ischaemia (MeSH term)
5. Intracranial haemorrhages (MeSH term)
6. Intracranial embolism and thrombosis (MeSH term)
7. 1 OR 2 OR 3 OR 4 OR 5 OR 6
8. Identit OR “self-concept” OR “self-perception” OR “self-identit” OR “occupational identity” OR “occupational adaptation” OR “occupational competence” OR
“occupational participation” OR “role-change” OR “meaningful activit” OR “biographical disruption”
9. Social identity (MeSH term)
10. Self concept (MeSH term)
11. 8 OR 9 OR 10
12. 12. 7 AND 11
4 M. M. MARTIN-SAEZ AND N. JAMES

which were extracted and recorded in a grid. Participants’ quotes process of linking translated secondary themes with
supporting themes and the original author’s interpretations were interpretations.
also included. The first author individually obtained key themes The process of synthesising the translations was carried out by
from all papers and second author extracted data from one third the first author and reviewed closely by the second author. Any
of the papers to ensure rigor and avoid selection bias. disagreements were resolved by in-depth discussions.
From the synthesis of translations a line of argument synthesis
was developed. Definitions of line of argument are diverse [41]. A
Data synthesis picture of the whole based on studies of the parts [32,42] is the
With the aim of developing new interpretations about the process definition that best represents the stance of the researchers.
of occupational identity disruption post-stroke, the selected stud- The final step of meta-ethnography consisted in finding ways
ies were synthesized using the seven-phased meta-ethnography to communicate the synthesis effectively to the audience it is
method described by Noblit and Hare [23] (see Table 3). Table 4 intended for [23]. It was decided to present the line of argument
illustrates the definitions used in the analysis. synthesis as a conceptual model to capture the complexity and
The studies were organized chronologically and the key dynamic nature of the occupational identity disruption process.
themes of the earliest published paper were compared with the
key themes from the second earliest published paper. The synthe- Results
sis of the two was then compared with the key themes of the
third earliest published paper and so on in a process called recip- The literature search produced 106 abstracts and 49 full-text
rocal translation. Each key theme was carefully revised to ensure papers that were reviewed by the first author. One-third of the
it had a similar meaning across papers. The translated key themes full-text assessments were also examined by the second author to
across papers gave rise to the secondary key themes. Table 5 ensure rigor in the application of inclusion/exclusion criteria and
shows examples of translating studies. to minimize bias [43]. See PRISMA flow diagram in Figure 1 for
During the synthesis, it was apparent that the individual stud- reasons for study exclusion. A total of 10 studies representing the
experience of 111 stroke survivors were selected for inclusion in
ies contained different elements of the occupational identity dis-
the synthesis. Table 6 illustrates the characteristics of the studies
ruption construct and therefore it was assumed that a line of
included in the synthesis.
argument synthesis could be completed. In so doing, the meta-
A line of argument synthesis based on a re-interpretation from
phors were written to articulate the similarities between study
the reciprocal translations [46] is presented. Ten third-order con-
outcomes [39].
cepts constructed from the data were conceptualized in the
Translating the secondary key themes into one another led to
model of occupational identity disruption post stroke presented
new interpretations [24]. The secondary key themes were grouped
in Figure 2.
into broader categories according to the emerging concepts, and
The model has been divided into three different stages (see
the themes expressed in relation to occupational identity disrup- Table 7 for a conceptual map of the synthesis) that occur in a
tion (e.g., the body as an instrument for participation). A compari- temporal succession and illustrate respectively what factors
son of conceptual terms across studies was carried out using the impact on occupational identity disruption, how is this experi-
principal investigator’s own interpretative language [40] in an enced and how individuals cope. However, the third-order con-
iterative process that re-conceptualized secondary key themes cepts overlap considerably and the three-stage division is
into third-order concepts. Mind-maps were used to support the somehow artificial since the stages intersect with each other sig-
nificantly. Thus, some third-order concepts are explained across
Table 2. Performance in CASP criteria of study included in the synthesis. sections to reveal different layers of meaning to support under-
CASP [33] [29] [25] [32] [34] [28] [7] [30] [31] [35] standing of occupational identity disruption within the context of
C1 Yb Y Y Y Y y Y Y Y Y these themes.
Ca2 Y Y Y Y Y Y Y Y Y Y
C3 Y Y Y Y Y Y Y Y Y Y
Table 4. Definitions of terminology used in the analysis.
C4 Y Nc N Y Y Y N N Y Y
C5 Y Y Y Y Y Y Y Y Y Y Key themes: The author’s original views and interpretations of participants views
C6 N N Y Y N N N Y N N about occupational identity disruption post stroke.
C7 Y Y Y Y Y Y Y Y Y N Secondary key themes: Broad themes that encompass the key themes across
C8 Y Y Y Y Y Y Y Y N Y studies obtained through the process of reciprocal translation (comparing the
C9 Y Y Y Y Y Y Y Y Y Y meaning of metaphors of studies with one another to identify similarities
C10 Y Y Y Y Y Y Y Y Y Y across papers).
Third-order concepts: The investigator’s interpretations of the selected author’s
Papers named by first author’s surname and year of publication.
a understanding of occupational identity as experienced by participants post
C stands for criterion.
b stroke.
Y stands for yes.
c
N stands for no.

Table 3. The seven phases of meta-ethnography proposed by Noblit and Hare [23].
Meta-ethnography phase Brief explanation
Phase 1: Getting started Determining the focus of the synthesis
Phase 2: Deciding what is relevant to the initial interest Identifying the studies to be synthesized
Phase 3: Reading the studies Reading of selected studies to identity “interpretive metaphors” [23, p. 28]
Phase 4: Determining how the studies are related Establishing how the studies are related to decide how to synthetize them
Phase 5: Translating the studies into one another The metaphors are compared or “translated” within and across studies
Phase 6: Synthesizing translations Translations are compared with one another in a second level of synthesis
Phase 7: Expressing the synthesis Tailoring the communication of the synthesis to the intended audience
 OCCUPATIONAL IDENTITY DISRUPTION POST-STROKE 5

Table 5. Example of translating studies.

Secondary key themes
The means for participation, the body, is strange
and unfamiliar
Body changes (physical, cognitive, emotional)
impact on ability to participate in meaningful
activities and create feelings of vulnerability
and guilt.
Key themes
Body parts were referred to using words that expressed detachment: “pig’s arm”. Strange sensations threatened
the union between body and self.
[33, p. 26]
Participants are constantly aware of their speech impairment. “[ … ] but I have suffered from it for four years and
I’m waiting for the first day that I don’t remember its existence” [35, p. 1832]
Their bodies being present physically but not present to do – a senseless, passive body, such as “an object on
the bed” [26, p. 531]
Participants described their bodies as changed and described a decreased connection between body and world:
“My head and my brain hurt, it feels like someone hugs my head like a foam sponge and squish, squeezing it
from the outside” [36, p. 849]
Both physical and cognitive fatigue were described as extremely frustrating experiences that interfered with
stroke survivors’ former roles in work and family life. The need to rest after activities made working life
impossible for most. At home, they had to entrust their former duties to their spouses. [33, p. 23]
For some people the ability to socialize was compromised due to functional limitations like fatigue: “sometime
sad with, you know, why, you know, out of work, you know, socializing [ … ] and I’m tired, exhausting because,
you know getting up, shower, takes time.”
[37, p. 7]
“They had trouble participating because he lost his chain of thought. Between the meetings, he struggled to
remember his case history to be prepared for the next meeting. His poor memory also greatly influenced the
manner in which he cared for his youngest child.”
[38, p. 204]
Bodily restrictions had serious consequences for the participant’s abilities to carry out practical tasks in daily life:
“at work, for example, if I find myself slow and realize I did the work a lot faster before. Nowadays it frustrates me.
I don’t like it, you know.”
[7, p. 2113]

Table 6. Characteristics of the studies included in the synthesis.

Source paper Sample population Participants
N ¼ 10 N (gender) age Research design Data collection Living circa/severity Time post-stroke Research aim
[7] N ¼ 8 (4 women) Systematic text Interviews Home dwellers/NIHSSc 6–8 months Explore the experience of
Norway Aged 45–80 condensation maximum score of 6. mild stroke in the
Mild stroke context of ESDd
[26] N ¼ 8 (4 women) Phenomenology Interviews Home dwellers/2 walked 5 months–2.5 years Explore participation in
Iran Aged 45–68 without aids, 4 with stick everyday occupations
and 1 w/ch user. post-stroke
[38] N ¼ 1 (male) Phenomenology Interviews Home dwellers/left-sided 6 weeks–1.5 years How masculinity is
Norway Aged 45 paresis, apraxia, and challenged in a young
aphasia stroke individual
[33] N ¼ 23 (9 women) Phenomenology Interviews Home dwellers/all but 2 3–25 years Explore how bodily changes
Norway Aged 32–68 had paresis, 9 depended influenced the
on others, perception of self post
9 used stick, 3 w/chb users stroke
[44] N ¼ 8 (4 women) Systematic text focus groups Home dwellers/mild to 3 months– Explore older adults’
Norway Aged 69–88 condensation moderate stroke not stated experience of
occupational changes
post stroke
[45] N ¼ 7 (4 women) Secondary template interviews Home dwellers/mean NIHSS 4–6 weeks Explore the experience of
Australia Aged 36–80 analysis 6.1 (range 1–11) ranging home for people with
from mild to severe stroke
stroke
[35] N ¼ 6 (3 women) Phenomenology 2–3 interviews, Home dwellers/all had 1–4 years Explore the experience of
Sweden Aged 46–76 observations difficulties using right engaging in everyday
hand and mild to occupations for
moderate aphasia. individuals with aphasia
[37] N ¼ 17 (11 women) Direct content Interviews Home dwellers/a range of 1–12 years Explore the experience of
UK Aged 23–55 analysis symptoms from mild stroke among young
aphasia to left sided individuals
paralysis
[34] N ¼ 22 (7 women) Phenomenology Interviews Home dwellers/hemiplegia, 6 months–9 years Explore how living with
Norway Aged 20–61 spasticity, cognitive stroke impacted on
deficits family life
[36] N ¼ 11 (5 women) Phenomenology interviews Home dwellers/9 had 11–13 years Explore the impact of
Sweden Aged 50–67 cognitive deficits. stroke in everyday life
Physically from w/ch use 11–13 years post stroke
to invisible symptoms.
a
Circ stands for circumstances.
b
w/ch stands for wheelchair.
c
NIHSS stands for National Institute of Health Stroke Scale.
d
ESD stands for early supportive discharge.
6 M. M. MARTIN-SAEZ AND N. JAMES

Figure 2. Conceptual model of occupational identity disruption post stroke.

Table 7. Conceptual map of the synthesis. An externalized body. This refers to a stroke survivor’s perception
Stage 1: The four factors responsible for occupational identity disruption post post stroke that their affected body parts did not belong to them;
stroke
“It was strange, I felt that my own arm was somebody else’s [ … ]”
1. An externalized and fragmented body
1.1. An externalized body [33, p. 24). Consequently individuals “were connected differently to
the world” [26, p. 531].
2. 1.2. A fragmented body
3. Losing control, freedom and independence A fragmented body. This captures the experience of a broken
2.1. Powerlessness body that restricts occupational participation “I do not understand
why I feel so tired … I did manage so many things before [ … ]”
4. 2.2. Taking on involuntary occupations
5. 2.3. Lack of control over one’s life [44, p. 150].
6. Occupational participation loss When individuals attempted to engage in occupations, their
3.1. Living a meaningless life “faulty” and “detached” bodies did not support their intentions,
disrupting their occupational identity and bringing feelings of
7. 3.2. A challenging everyday life diminished self-worth.
8. 3.3. Changes to occupational meaning and satisfaction
9. Changed social and familial interactions
4.1. Not being understood by others
Losing control, freedom, and independence
10. 4.2. A change for the entire family This relates to how stroke survivors felt that they needed support
Stage 2: The experience of occupational identity disruption from others to participate in their valued occupations and felt
1. Occupational identity loss uncertain about whether they had the abilities required to
2. A devalued self
3. A threat to identity continuity achieve their desired goals.

Stage 3: Coping with occupational identity disruption
1. Protecting one’s self
2. Social isolation
3. Re-inventing one’s occupational self
Stage one: the four factors responsible for occupational identity
disruption post-stroke
An externalized and fragmented body
This relates to how the body is conceptualized as the instrument
for occupational participation and includes the cognitive and
emotional processes involved in participation.
Powerlessness. This was highlighted by individuals feeling unable
to act when and how they wanted: “I want to be independent
(altered voice from eager to monotonous), but when you have suf-
fered stroke, there is nothing to do about the situation.” [7,
p. 2114].
Taking on involuntary occupations. This expresses how stroke sur-
vivors felt a lack of freedom through having to take on roles and
occupations that were not their choice. A participant reported
feeling stressed by changing her enjoyable walks for unpleasant
physical therapy: “I previously used to go walking in a park close to

our place every morning at 7.15 am. Mornings make me cry, morn-
ings have been painful for me [ … ]” [26, p. 530].
Lack of control over one’s life. This illustrates the feelings stroke
survivors had about being unable to make choices about their
occupational participation “ … my time wasn’t my own time [ … ]”
[45, p. 430].
Undoubtedly, feelings of disempowerment, being at the mercy
of others and the inability to act freely have an impact on the
individual’s occupational identity and contribute to a devaluing
self-concept.
Occupational participation loss
The stories of participants expressed an intense experience of loss
due to being unable to participate in valued occupations.
Participants experienced feelings of emptiness and were
immersed in a daily struggle that changed the meaning and
pleasure obtained from occupational participation.
Living a meaningless life. Life felt hollow when valued occupa-
tions were no longer possible: “[ … ] I am not living. I have no life,
not at all, this is my life. What life is this? [ … ]” [26, p. 532].
A challenging everyday life. Participants described feelings of
being under-occupied and having meaningless routines: “The lack
of activities is retelling [sic]. There’s no crocheting and sewing and
that sort of thing, and I used to fill my time with that … ” [45,
p. 429].
Changes to occupational meaning and satisfaction. The meaning
of occupations altered and the reasons to engage in occupations
were different post-stroke, as illustrated by this participant: “I
wouldn’t write otherwise but I write a diary on purpose … I write,
write and with a pen eeh [ … ]no no, is not fun, no no” [35,
p. 1832].
The loss of valued occupations that structured daily life and
provided satisfaction left individuals with a meaningless experi-
ence of their own lives.
Changed social and familial interactions
The impact on family dynamics and the social network of the
stroke survivor was reported consistently across studies. Not feel-
ing understood and needing help changed the relationship with
others, mainly within the family environment.
Not being understood by others. Negative behaviours from
others weakened an individual’s self-concept. For example, a par-
ticipant felt judged on his ability to do electrical wiring by his
faulty speech: “People, I have such a feeling that they sort of don’t
understand, many think like that one can’t do it anymore.” [35,
p. 1831].
A change for the entire family. However, the biggest change
occurred within the stroke survivor’s family. Role reversal, inter-
generational changes and alterations in the person’s position in
the family were not uncommon.
In summary, the factors discussed and their close interactions
(represented by the arrows in Figure 2) are the essential compo-
nents of how the process of occupational identity disruption
post-stroke is developed and a sense of diminished self-worth is
established. The interaction between the four factors reinforces
each other, for example, the fragmented and externalized body
restricts occupational participation and occupational participation
loss feeds back to the individual the experience of a fragmented
OCCUPATIONAL IDENTITY DISRUPTION POST-STROKE 7
and externalized body. The process of occupational identity dis-
ruption is therefore dynamic and multifactorial.
Stage two: the experience of occupational identity disruption
Stage two is divided into three third-order concepts that repre-
sent the investigators’ interpretation of how occupational identity
disruption was experienced post stroke. This experience was in
intimate relationship with the four factors explained in the previ-
ous section and the interactions between them.
Occupational identity loss
Post stroke, individuals experienced an abrupt loss of their former
occupational selves when they were not able to participate in the
valued occupations by which they identified themselves: “It’s the
fact that the sport was my life, it was my pleasure, it was my job,
financially, everything [ … ]. And I lost it just like that, with literally
the turn of a page [ … ]” [37, p. 6]. The bigger the difference
between pre-stroke and post-stroke “doing”, the stronger the feel-
ing of occupational identity loss. For many, their pre-stroke occu-
pational self was the baseline they compared themselves with
post-stroke. This comparison brought feelings of frustration, sad-
ness and pain.
Stroke survivors’ difficulties in fulfilling their former roles and
meeting their own and others’ expectations was a major factor in
occupational identity loss and a source of suffering: “[ … ] So I am
not able to be what I wished to be, a real grandma. That is terrible
[ … ] [34, p. 7]. They were also uncertain about whether they
would be who they wished to be in the future: “Obviously, you
are thinking ahead [ … ] is this how it’s going to be? [ … ]”
[37, p. 7].
A devalued self
Occupational identity loss had an important impact on the per-
ception of self-worth. That is, the perception of oneself as some-
one having importance and significance: “[ … ] you feel you
haven’t as much value as before when you can no longer manage
work [ … ]” [33, p. 25]. Not being able to “do” and therefore “be”
their former selves brought feelings of “being useless”, “a parasite
of others” [7, p. 2117], “not needed any longer” or “redundant in
society” [44, p. 151–152]. Being active and useful demonstrated a
strong link with a positive self-value. The four factors responsible
for occupational identity disruption (see previous section) indi-
vidually and combined contributed to a devalued self as repre-
sented in Figure 2.
A threat to identity continuity
Post-stroke, individuals were not sure about who they were any
more due to lost roles, hobbies, and social participation activities:
“Who am I, maybe I am not the same person any longer” [33,
p. 24]. Indeed, a partial or total identity change related to occupa-
tional identity loss was reported in most studies reviewed: “It
really is like a bereavement, a stroke. I mean, it really was like that
woman had died, the one that wore high heeled shoes and walked
around and ran a business and had a fantastic memory [ … ]”
[37, p. 5].
The experience of occupational identity loss and a devalued
self generated doubts and uncertainties about who one was and
would be in the future, pose a threat to stroke survivors’ identity
continuity.
8 M. M. MARTIN-SAEZ AND N. JAMES
Stage three: coping with occupational identity disruption
Stage three explains how individuals post stroke coped with occu-
pational identity disruption, a process that threatened the sense
of self and brought feelings of worthlessness and uncertainty
about the future.
Protecting one’ self
After a stroke, individuals felt they could no longer cope with
social participation: “I don’t join them on a night out [ … ] I am not
able to dance [ … ], I am not active the same way they are, (it
would) not be very social, so it is no point” [34, p. 7]. “Being scruti-
nized”, “not meeting others’ expectations” [7, p. 2116], being per-
ceived “not as fun anymore” [37, p. 7] or the need to “preserve
their former image in the eyes of others” [26, p. 532], were among
the reasons given for avoiding social contact as a protective
mechanism. At the same time, most participants missed their
social relationships and felt isolated. Younger participants who
had dependants could not opt out of social participation: “You
just have to find the strength. [ … ] you have to find your hidden
power even though you do not know where to take it from” [7, p.
2116]. In contrast, single individuals who did not study or work
could choose to avoid social interaction. This group of people
also felt isolated and spent longer periods of time at home.
Social isolation
Most participants reported a loss of social network due to their
inability to engage in previous occupations with a loss of paid
employment being a main contributor to social isolation: “Yes, I
miss the whole work situation. The contact with my workmates and
having dealings [crying], yes [crying]” [7, p. 2115]. Participants
expressed how their social contact decreased as time passed by,
from being treated with “silk gloves” close to the stroke onset to
more distant contact later on [34, p. 7]. Social isolation reinforced
occupational identity loss as a result of losing important social
roles (i.e., friend, or participant in hobbies).
Re-inventing one’s occupational self
All papers, without exception, presented stories of occupational
identity disruption followed by stories of occupational identity
reconstruction. Indeed, both stories overlapped considerably and
while individuals were still grieving for their loss, they were at the
same time fighting to re-invent themselves, hoping to get their
autonomy and freedom back, fulfil their former or new roles, find
new ways of participating, gain control over the fragmented and
externalized body and re-establish social interactions. For some,
this battle was still on 13 years post-stroke. One of the main moti-
vators to continue fighting was the need to contribute, to release
the burden on their loved ones and feel useful: “Not just be a use-
less blob around this house that can’t do anything” [37, p. 8]. For
others, family commitments (e.g., young children) were a strong
volitional factor.
Post stroke, individuals had to discover new ways of participat-
ing to find meaning in life. Many identified alternative ways of
enjoying previous occupations: “My fingers do not work very well
any longer … but I do enjoy listening to music instead [of playing
piano]” [44, p. 153]. Others had to find occupations to replace
previous ones, particularly paid employment: “The boat has kept
me alive as well, all of this engages me, renting out and booking
and staying on with customers [ … ] [36, p. 849]. Going back to
work was key to reconstructing one’s occupational identity. Many
fought hard to go back to paid employment: “I have not got my
job back yet, but I’m holding on and I will win, I’m close, close now”
[36, p. 849]. Indeed, those who managed to return to paid
employment reported more life satisfaction than those who
did not.
In summary, coping with occupational identity disruption led
some individuals to opt out of social participation to protect their
already devalued selves. In addition, the impact of the four factors
responsible for occupational identity disruption post stroke led to
social isolation and the perpetuation of a negative vicious circle
that reinforced the occupational identity disruption process.
Eventually, most stroke survivors started re-inventing their occu-
pational selves in a journey that took them to test their skills and
find new ways of participating. In so doing, they continued to
learn about their bodies and experienced social interactions differ-
ently. They experienced occupational gain but also occupational
loss, so that re-inventing one’s occupational self often overlapped
with the process of occupational identity disruption.
Discussion
A model of occupational identity disruption post-stroke has been
developed for the first time (see Figure 2). The model describes
the main elements that influence the experience of occupational
identity disruption after a stroke and the impact this disruption
has not only on one’s self-concept, but also on how one interacts
with one’s world post stroke. As illustrated in the model, identity
is a dynamic and multifactorial process in which four factors
(identified in stage 1 of the model) are in fluid interaction with
each other, leading to occupational identity disruption post
stroke. In so doing, each factor reinforces the effect of the others,
demonstrating a kinetic and complex interplay.
Since occupational identity is part of the general self-identity
construct, it is expected that elements that impact on identity will
influence occupational identity. However, no study to date has
identified the four factors conceptualized in this interpretive syn-
thesis, which gives an indication that occupational identity is a
distinctive dimension within the general identity construct.
The conceptual model created in this interpretive synthesis
illustrates how the experience of occupational identity loss was
intimately connected with a perception of a devalued self.
Moreover, the stronger the feeling of occupational identity loss
the greater the perception of diminished self-worth. This connec-
tion was probably influenced by western societies’ culture, where
individuals identify themselves by what they do [18]. Indeed,
Hammell [47] proposed that the inability to participate in valued
occupations leads to diminished self-worth and identity loss,
which is in line with the findings of this synthesis.
Identity continuity is an important concept in stroke rehabilita-
tion [48] that is vital for stroke survivors’ well-being [49,50] as it
creates a sense of coherence over time [51]. When an individual’s
sense of continuity is broken due to a major illness like stroke, an
unplanned transition begins [52] to integrate oneself in the past,
present, and future as the same person. The findings of this syn-
thesis support the temporal dimension of occupational identity
and how occupational identity disruption puts identity continuity
at risk. Moreover, the threat to identity continuity is a major
motivator for individuals to protect themselves and withdraw
from social interaction soon after the stroke onset. However, re-
inventing one’s occupational self is also prompted by the need to
connect their past, present and future occupational selves [20].
Walder and Molineux [9], in their theoretical model of re-estab-
lishing an occupational identity post stroke, refer to how stroke
survivors confront the impact of the stroke on their daily life
according to their past, present, and future reality. Indeed,

humans seek a sense of continuity in occupational identity [12], a
complex process that could take a long time.
Previous studies [15,17] reported that 6–10 years post stroke,
individuals were still fighting to achieving occupational adapta-
tion and gain their lost social position. The present synthesis had
similar findings, supporting the notion that re-establishing one’s
occupational identity is a complex process. This complexity was
portrayed by Kielhofner [14] when describing how multiple factors
such as one’s sense of capacity or one’s perception of the envir-
onment were integrated over time, along with past experiences,
to craft a desired future. This conception that identity post-stroke
is fluid and in constant transformation was also identified by Ellis-
Hill et al. [49] as a component of the Life Thread Model. Walder
and Molineux [9] highlighted the complexity of occupational iden-
tity reconstruction post stroke, portraying an intricate and
dynamic process in which stroke survivors made connections
between three domains – self, others and reality – during the
adjustment process.
The fluidity of occupational identity post stroke can be
observed in that the process of re-inventing one’s occupational
self overlaps with occupational identity disruption. This intersec-
tion of processes has not been described in the literature as such,
but Eriksson and Tham [18] reported that individuals experience
normality when succeeding in occupational participation at the
same time as they felt “altered as doers”. This dual conception of
oneself as an occupational being is part of the process of testing
new skills, finding new ways of participating to find purpose and
meaning in life, regaining a sense of wholeness and continuity as
an occupational being.
Sorrow, doubts about the future and uncertainty were the feel-
ings identified by this synthesis as core to the occupational iden-
tity disruption process. These feelings were present when stroke
survivors chose to protect themselves and during the process of
re-inventing one’s occupational self. Indeed, uncertainty has been
labelled in other studies [53,54] as the feeling that dominated
individuals when negotiating a “new way of being and acting in
the world” [21, p. 2302]. A life dominated by “not being able to
do” [26, p. 530] connected individuals to their world differently, as
they were not able to express who they were as occupational
beings [55].
This synthesis found a strong bidirectional link between social
isolation and the process of occupational identity disruption. A
fragmented body that was in pain or exhausted could not sustain
social interaction and individuals often required help from others,
which made them lose their freedom and independence.
Concurrently, loss of valued occupations restricted occupational
opportunities for socializing that contributed to occupational par-
ticipation loss. Therefore, social isolation was identified as a con-
tributing factor in the process of occupational identity disruption
that added to the threatening of identity continuity. Certainly,
social relationships are important for support and contentment,
but also to maintain a sense of continuity [51]. Indeed, Walder
and Molineux [9] identified “connecting with others” as a key
aspect of reconstructing occupational identity post-stroke.
Occupational identity, according to Kielhofner [14], is an instru-
ment of self-definition and an outline for future action. Both
dimensions of occupational identity are supported by the findings
of this synthesis. Stroke survivors doubted who they were,
because their mechanism of self-definition could no longer pro-
vide the meaning and singularity that had characterized them as
individuals in the past. Similarly, re-inventing one’s occupational
self is a unique process determined by the individual’s desired
occupational identity. For example, some fought to be workers,
OCCUPATIONAL IDENTITY DISRUPTION POST-STROKE 9
others to resume previous hobbies, even if substantial modifica-
tions had to be introduced.
There is often a disconnect between patient’s and clinician’s
rehabilitation goals [8,56]. Understanding the process of occupa-
tional identity disruption in the context of an individual’s past but
also their desired future will facilitate shared decision-making
between stroke survivors, their care-givers and clinicians about
the aims of rehabilitation. Indeed, as demonstrated in this synthe-
sis, not being understood by others, including healthcare profes-
sionals, contributes to the process of occupational identity
disruption and social isolation. Understanding an individual’s pro-
cess of occupational identity disruption could enhance shared
decision-making between clinicians, stroke survivors and their
care-givers, focusing rehabilitation interventions not only on func-
tional goals, but also on restoring occupational identity
continuity.
The characteristics of occupational identity as a fluid and
dynamic process could be used in a creative way to support indi-
viduals in the process of re-inventing one’s occupational self. To
enable this process, it is paramount that healthcare professionals,
as well as the organizations they work for, recognize the need for
a more occupation-focused rehabilitation arena that is, rehabilita-
tion environments that put the stroke survivors and their occupa-
tional identity at the heart of the rehabilitation process, providing
opportunities for people to engage in valued occupations
through which they could pursue their desired occupational
identity.
From this perspective, medically led rehabilitation units in hos-
pital settings do not seem to be the best environment to provide
stroke rehabilitation. Indeed, hospitals provide limited choices for
occupational participation, and lack of engagement has been
found to limit long-term adjustment [57]. But stroke rehabilitation
continues after hospital discharge, led by community rehabilita-
tion teams or early supported discharge services. Occupation-
focused community rehabilitation interventions that could sup-
port stroke survivors for an extended period is crucial, since years
after stroke, individuals had not yet achieved occupational
adaptation.
Study limitations
This synthesis has used data that had already been analysed by
the authors of the selected papers rather than original interview
data from participants, which may be considered a limitation.
However, interpretive synthesis is a recognized qualitative
research methodology and a rigorous approach throughout the
research enquiry was used as described in the Materials and
methods section. In addition, meta-ethnography is a complex
method that lacks clarity regarding how is best conducted [41].
This weakness has been counteracted by using methodologically
strong papers that used meta-ethnography, such as [24,36], to
guide decision making during the data analysis process. The refer-
ence paper in using meta-ethnography [41] had not been pub-
lished at the time the data analysis for this interpretive synthesis
was completed.
This interpretive synthesis complies with the four components
of the GRADE-CERQual approach [58]. The primary studies sup-
porting the findings of this review are methodologically sound
(see Quality assessment section), the primary studies have similar
context to that of the synthesis question and the data are robust
without ambiguity. Indeed, the third-order constructs that
emerged in the analysis were supported by at least four different
10 M. M. MARTIN-SAEZ AND N. JAMES

Table 8. Studies supporting each of the third-order constructs that emerged from the synthesis.
Third-order constructs
Studies in An
order of externalized Changed Re-inventing
publication and Losing control, Occupational social and A threat to one’s
(most fragmented freedom and participation familial Occupational A identity Protecting Social occupational
recent last) body independence loss interactions identity loss devalued self continuity one’s self isolation self
[34] X X X X X X X X X
[26] X X X X X X X X X
[33] X X X X X X X X
[35] X X X X X X
[37] X X X X X X X X X
[38] X X X X X X X
[7] X X X X X X X X X X
[44] X X X X X
[36] X X X X X X X
[45] X X X X

papers (see Table 8), suggesting that the data are sufficiently rich
to support each of the findings.
Only studies in which 50% of the findings focused on occupa-
tional identity disruption were suitable for inclusion. Similarly,
studies that were published before 01 January 2012 and studies
published in any language other than English were excluded. The
extent to which these restrictions impoverished the data used for
the synthesis is unknown.
All participants in the papers synthesized were home dwellers
and younger individuals were over-represented (see the charac-
teristics of the studies included in the synthesis in Table 6);
therefore, the model of occupational identity disruption post-
stroke may not characterize the experience of stroke survivors
who live in nursing homes or those of more advanced age.
Despite these limitations, the model could still be used to pro-
vide some understanding and context to the individual’s experi-
ence of occupational identity disruption post-stroke; although,
the application of the model in these groups needs to be
explored further.
Conclusions
The findings of this synthesis support the notion that occupa-
tional identity is fluid, and that in its flow, the process of disrup-
tion and reconstruction overlaps and interacts in a complex
interplay to achieve occupational identity continuity. Occupational
participation is the main means of constructing a sense of who
one is as an occupational being and should be a central element
of stroke rehabilitation. A better understanding of an individual’s
personal experience of occupational identity disruption post
stroke could support clinicians, stroke survivors and their care-giv-
ers to focus rehabilitation not only on functional gains but also
on occupational identity reconstruction.
Disclosure statement
No potential conflict of interest was reported by the authors.
Funding
Maria M. Martin-Saez is funded by the National Institute for
Health Research (NIHR) [Masters in Clinical Research] for this
research project. This paper presents independent research. The
views expressed are those of the authors and not necessarily
those of the NHS, the NIHR or the Department of Health and
Social Care. This manuscript was prepared during a research fel-
lowship funded by Addenbrookes Charitable Trust and Cambridge
Biomedical Research Centre.
ORCID
Maria M. Martin-Saez http://orcid.org/0000-0003-1926-3583
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