Topics in Stroke Rehabilitation

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Experiences of participation in everyday activities

for people with stroke in Nairobi, Kenya

Julius Kamwesiga, Aileen Bergström, Andrew Bii, Lena von Koch & Susanne
Guidetti

To cite this article: Julius Kamwesiga, Aileen Bergström, Andrew Bii, Lena von Koch &
Susanne Guidetti (2023) Experiences of participation in everyday activities for people
with stroke in Nairobi, Kenya, Topics in Stroke Rehabilitation, 30:5, 483-492, DOI:
10.1080/10749357.2022.2070360

To link to this article: https://doi.org/10.1080/10749357.2022.2070360

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TOPICS IN STROKE REHABILITATION
2023, VOL. 30, NO. 5, 483–492
https://doi.org/10.1080/10749357.2022.2070360

Experiences of participation in everyday activities for people with stroke in

Nairobi, Kenya
a a
Julius Kamwesiga , Aileen Bergström , Andrew Biib, Lena von Koch c
, and Susanne Guidetti a

a
Division of Occupational Therapy, Department of Neurobiology Care Sciences and Society, Karolinska Institutet, Sweden; bDepartment of
Occupational Therapy, Kenya Medical Training College (KMTC), Nairobi, Kenya; cDivision of Family Medicine and Primary Care. Department of
Neurobiology Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden

ABSTRACT ARTICLE HISTORY

Background: Stroke is currently one of the greatest causes of disability and death in Kenya. Received 26 October 2021
Previous research indicates a lack of knowledge regarding how participation in everyday life is Accepted 18 April 2022
experienced after a stroke in Sub-Sahara Africa. KEYWORDS
Objectives: The aim was to explore and describe experiences of participation in everyday life for Activities of daily living;
people who had had a stroke living in Nairobi, Kenya. occupational therapy; stroke;
Methods: A qualitative study design using semi-structured interviews with nine people who have rehabilitation
had a stroke, together with their caregivers. The inclusion criteria were: 1) stroke diagnosis 2) no
psychiatric diagnosis, and 3) ability to understand and respond to instructions in English, or local
language. All participants were living in the community, members of the Stroke Association of
Kenya, and participated voluntarily. The transcribed interviews were analyzed using qualitative
content analysis.
Results: The participants expressed their experiences of participation in everyday life, along with
how resources and barriers affected their participation. Three categories were found:1) A sense of
satisfaction at being involved in everyday life, 2) Challenges in doing everyday activities and social
participation, and 3) Dependence as enabling or hindering participation.
Conclusions: After stroke, people’s experiences of participation in everyday life changed.
Performing activities that the person found meaningful added a sense of increased participation
and satisfaction. The experience of being dependent in everyday activities and finances appeared
to reduce perceived participation. Participation in a group connected to a patient association with
like-minded people contributed to a new role, and a sense of belonging.

Background and knowledge of stroke among rehabilitation practi­

African countries are undergoing epidemiological
transition, which is driven by changes in socio-
demography and lifestyle,1,2 and non-communicable
diseases (NCDs) have increased in Africa.3 Stroke
causes more deaths and disabilities in low-income
countries than in high-income countries (HIC).4 In
low- and middle-income countries (LMIC), infectious
diseases are often prioritized, resulting in the fact that
resources allocated for stroke prevention and treat­
ment are limited.5,6 Today, stroke is one of the leading
causes of death in Kenya.5,6 However, the clinical
epidemiological data available on stroke in Africa to
adequately inform various efforts for effective care and
rehabilitation is limited.7 Moreover, research on
stroke rehabilitation in an African context is lacking
tioners, as well as among those affected, is also
limited.7,8
Recovery after a stroke is often demanding and
can take a long time. After a stroke, it is common
for the person to experience a changed life situa­
tion, requiring them to learn to adapt to the new
situation.9–11 Activities that have previously been
taken for granted may, for some people, be impos­
sible to perform in the same way as before.9,10,12
The feeling of satisfaction at being able to parti­
cipate in desired everyday activities, such as taking
care of oneself and one’s household, as well as
participation in social and leisure activities, may
be affected by limitations in physical capacity
because of stroke.9,12 In a study from Uganda, the
major perceived consequences after a stroke were

CONTACT Susanne Guidetti susanne.guidetti@ki.se Division of Occupational Therapy, Department of Neurobiology Care Sciences and Society,
Karolinska Institutet, Stockholm, Sweden
Please address correspondence to Globalization and Health
© 2022 The Author(s). Published with license by Taylor & Francis Group, LLC.
This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-
nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built
upon in any way.
484 J. KAMWESIGA ET AL.
impaired hand function, reduced strength, and lim­
ited participation in daily life.7 Most household
activities, such as washing clothes, retrieving water
from the well or washing dishes, are commonly
done manually in low-income countries,11 and
can be significantly impacted after having a stroke.7
Different roles related to activity in everyday life
may be disrupted or completely lost after having a
stroke, and the person may experience restrictions
in participation.7,11 Not being able to live up to
expected roles or being unable to perform activities
of daily living (ADL) independently, could contri­
bute to a reduced quality of life.7,13 A study in
Kenya showed that young people with stroke
experienced, among other things, difficulties in
maintaining the roles they had before the illness.14
Studies from Kenya and Uganda have shown that
there was a need for a role shift when becoming the
caregiver through having to take great responsibil­
ity for the person who had had a stroke and that
person’s health.9,11,15
In many African countries, economic factors are
a major hindrance to seeking healthcare and reha­
bilitation after stroke. The fees for healthcare are
high, and most people cannot afford the care they
need. People who were disadvantaged financially
were, generally, in greater need of care but in the
absence of assets they chose not to seek it.9,16 The
person who has had a stroke and the family need to
take responsibility for attaining rehabilitation.7–9
However, it is not only about the fees, but also
about being able to transport oneself to care and
rehabilitation. Moreover, access to rehabilitation
services is inadequate due to the low number of
rehabilitation professionals.
In summary, access to stroke rehabilitation is
limited in low-income countries in Sub-Sahara
Africa17 e.g. Kenya. For people who have had a
stroke, participation in meaningful everyday life
activities is an important goal for successful reha­
bilitation. However, available knowledge regarding
everyday life after stroke is based on studies from
HIC and findings may not be applicable to people
living with a low-income in an African context.
Hence, further studies of everyday life after stroke
in an African context could help demonstrate the
need for improved rehabilitation services.
Therefore, the purpose of this study was to explore
and describe experiences of participation in every­
day life for people living in Nairobi, Kenya who
have had a stroke.
Method
Design
A qualitative interview study.
Study setting and participants
In November 2018, members of the Stroke
Association of Kenya (SAK), comprised of people
who had had a stroke, caregivers, spouses, parents,
children, and siblings, were invited to participate in
a seminar about stroke. The invitation also
included information about the possibility for
stroke victims, alone or together with caregivers,
to take part in an interview about experiences of
participation in everyday life after stroke. Thirty
people who had had a stroke provided their tele­
phone numbers at the seminar, indicating willing­
ness to be contacted to participate in the study. The
inclusion criteria for participants with stroke were:
1) stroke diagnosis, 2) no psychiatric diagnosis, and
3) ability to understand and respond to instructions
in English, or local language. All participants were
living in the community, all were members of SAK
and participated voluntarily.
Data collection
A researcher assistant sought contact with all parti­
cipants who had provided their telephone numbers
at the seminar. Nine people were reached and
agreed to participate. The interviews conducted by
the research assistant took place in the participants’
homes or at the campus of Kenya Medical Training
College (KMTC) in Nairobi. Four of the nine par­
ticipants were accompanied by their caregivers
(n = 5), who also participated in the interviews.
Therefore, verbal, and written information
regarding the study and consent was sought from
both the person who had had a stroke and their
accompanying caregivers (n = 14). A semi-
structured interview guide (Appendix 1) with
open questions and possible follow-up questions
 TOPICS IN STROKE REHABILITATION 485

developed by the authors (LvK, SG) was used. The Table 1. Demographic data, gender, age, number of years after
interview guide had been developed and tested in stroke, information providers who answered the questions.
Accompanying
an earlier study in Uganda.18 The guide included Person with stroke Years after caregivers
questions regarding the pathway from stroke onset n= 9 Sex Age stroke n=5
1 Man 70 4 wife,the person’s
to the time of the interview, and experiences of driver
participation in everyday life after stroke. The inter­ 2 Woman 26 22 -
3 Man 65 2 wife
views were audio recorded and lasted between 60 4 Man 57 9 -
and 90 minutes. 5 Man 39 5 wife
6 Woman 31 10 -
7 Man 70 2 -
8 Woman 48 2 adult son
Data analysis 9 Woman 58 10 -

The interviews were transcribed verbatim to 298

pages of text, and qualitative content analysis was
applied19 by the authors. Initially, all interviews
were read through to get a grasp of the material, a
sense of the whole, and a general understanding of
descriptions of the participants’ experiences of taking
part in everyday activities was obtained. The next
step was to condense sentence-units to codes.
Similarities and differences between the codes were
analyzed and thereafter divided into categories.19
Quotes were selected from the interviews to ensure
the credibility of the results.16 This was a process of
further abstraction of data at each step of the analysis,
from the manifest and literal content to latent mean­
ings. These findings, together with the reflections
from the first author (who had a familiarity and
cultural awareness of East Africa), and the sample
in the study were discussed with all authors as an
experienced research group, in a structure of infor­
mal triangulation.20 Moreover, to enhance quality
and transparency, the study was reported in confor­
mance with the consolidated criteria for reporting
qualitative research (COREQ) Guidelines.21
Results
The demographics of the nine participants are
described in Table 1.
Three categories were identified from the analy­
sis of the interviews with the participants: 1) A sense
of satisfaction at being involved in everyday life, 2)
Challenges in doing everyday activities and social
participation, and 3) Dependence as enabling or
hindering participation.
The analysis revealed that the participants felt
thankful for being involved in daily activities in
different ways. The participants described that
they had come a long way in their acceptance of
life after stroke and of living with the restrictions in
participation that they experienced. They had come
to understand their challenges and limitations in
performing daily activities and participating in
everyday life. They expressed that they had
accepted their lives, despite meeting difficulties in
carrying out activities with a sense of participation,
regardless of limitations. By changing their way of
thinking, they created conditions for experiences of
satisfaction. Limitations in performance of every­
day activities enabled the participants to think of
new ways to manage the activities.
“But after some time, as I was coming to . . . my
rehab and I was taught you know, these occupa­
tional (therapists) they really taught me, they really
taught me, they told me ey, don’t accept everything to
be done for you – do it yourself . . . . And I started
doing things myself. Then slowly I increased my
independence.” (participant 4)
“To have a positive attitude towards life . . . . Eh
. . . and to accept any situation as it comes . . . . Mmm
to accept it and move on!” (participant 8)
When they successfully performed desired activ­
ities, activities they needed and wanted to do, it
brought motivation and gave them hope and
impetus to achieve independent living. By not
accepting help from other people to do things,
and challenging themselves in more demanding
activities, a greater participation and increased
satisfaction in everyday life was achieved.
A sense of satisfaction at being involved in everyday
life
The participants expressed how they slowly, and
through repetition, became familiar with perform­
ing their daily activities again after they had had a
486 J. KAMWESIGA ET AL.
stroke. The experience of performing activities by
themselves also increased their sense of participat­
ing in everyday life. One participant expressed that
it was important to contribute to the family’s every­
day life, even if it was just to help cook rice for
dinner. By participating in home chores, the parti­
cipants who had had a stroke felt important and as
being part, of and belonging to, the family. One
participant described that through involvement in
home chores, he had also learned to handle almost
all cooking independently.
“It has changed, what else. I told you nowadays, after I
have improved, I can do most of the cooking, I like doing
it myself.” (participant 7)
The experience of being independent was some­
thing that helped the person who had had a stroke
to feel important and more involved in everyday
life. The drive to constantly improve skills and
become better, indicated to the participants that
doing more difficult and demanding activities was
possible. Several of the participants stated that
when they tried to carry out activities on their
own, it also resulted in increased participation and
the feeling of being satisfied with themselves.
“And I started doing things myself. Then slowly I
increased my independence.” (participant 4)
“But if it’s something that I can do on my own I take care
of that.” (participant 2)
Returning to the previous work that the partici­
pants had before stroke gave them great satisfac­
tion. It was a good opportunity to participate in an
activity that was valued by the participants. Two of
the participants mentioned that their former
employers had made changes in their work tasks,
which facilitated and enabled participation in their
work situation. One person was satisfied with his
new work situation and liked to work part time.
“Now I prefer to teach part-time . . . . I really, my
feeling really got a lot of empowerment. Cause now I
am interacting with other students.” (participant 9)
The adaptation of the work made it possible for
these participants to experience their work as satis­
factory. Several participants had found new ways of
living where they felt involved and gained a sense of
satisfaction; some had, for example, started their
own businesses. Working for the association SAK
(Stroke Association of Kenya) proved to be
meaningful for several of the participants, as this
gave them opportunities to supply peer-support to
others who had had a stroke. They provided sup­
port by using their own experiences as examples of
how to get involved and participate in everyday life.
The feeling of being able to help and encourage
others who were in the same situation as they had
once been, was perceived as very satisfying.
Working for the SAK also entailed the task of
spreading vital information about stroke and life
after stroke, which was expressed as promoting a
sense of satisfaction. One of the participants felt
that the illness had an inherent meaning.
“So I find I’m able to help, to reach out to more people,
encourage them and think, I find a lot of . . . fulfilment in
that . . . . Being active and reaching out. Being able to be
there for someone else even with my limitations.” (partici­
pant 9)
Challenges in doing everyday activities and
social participation
Many participants experienced it as challenging to
carry out daily activities, e.g. washing and preparing
food. They expressed that lost hand function was
contributing to restricted participation in doing
things since many activities required the use of two
hands. All the female participants expressed how
they were no longer able to use their hands at an
optimal level and therefore had lost their expected
and desired roles as cook for their family members.
One participant described her experience as follows;
“I prepare my own food . . . . It is sometimes a
challenge, but I, but I do . . . . Mmm taking food from
the plate was a problem. Even right now sometimes.
The right hand does not work properly.” (participant 8)
“Sometimes even I do the dishes and wipe the
dishes but, I have to be sitting because when I
stand, it becomes very heavy.” (participant 7)
One wife to the person who had had a stroke
expressed that:
“You know he uses one hand, this one he does not
use . . . . Yes he uses the left hand to feed himself.”
(wife participant 1).
Impaired hand function was a challenge and
seemed to restrict participants’ taking part in both
the food situation and in the work situation.

The experience of no longer being able to inter­
act and socialize as before was conveyed as challen­
ging and contributed to a decrease in social
participation. Several participants expressed the
challenge of not being able to move and socialize.
They stated that they stayed at home all the time
and hence were less involved in social interactions
and missed out on making new community rela­
tionships. Furthermore, they reported a challenge
to interact with old friends since it seemed as
though the friends did not know how to respond
to the person’s changes after the stroke.
One participant expressed: “Because I can’t meet
friends. And some friends when you are sick they
cannot move near you.” (participant 3). When the
participants stayed at home, they experienced that a
social distance was created through a lack of under­
standing of their problems after stroke.
“Yes, yes he has changed because now he has
changed his friends. The friends that used to be
there are not there anymore. So most of the times
the TV is his friend.” (wife of participant 5)
Some of the participants mentioned that before
they had contacted SAK, they found social interac­
tions challenging. Their contact with SAK, a con­
text where there was a good understanding of
stroke, increased their social participation. The
contact with others who had had a stroke and the
new role as an SAK member, changed their view of
themselves.
The dependence as enabling or hindering
participation
The participants described different aspects of
dependence that enabled or hindered their partici­
pation in everyday life. Some participants expressed
how they were dependent on other people to per­
form ADL. They needed support to cope with toilet
visits or when shopping. Other participants were
dependent on others to finish activities.
“When I do the washing, I’m done with my wash­
ing, ready to put my clothes on the hanging line. I
must call someone to come and help me with the
hanging.” (participant 2)
One person described the need of assistance in
dressing and showering. Another person expressed
their need of support as
TOPICS IN STROKE REHABILITATION 487
“Because I can’t wash myself, so she has to help
me. Dressing . . . She dries my body with the towel,
she dresses with other clothes.” (participant 3)
Some participants described the dependence on
another person as a resource, while other participants
perceived it as an obstacle. The participants who
interpreted dependence as a resource felt that the
assistance from another person promoted their parti­
cipation, and that together they created the conditions
for the person to cope in everyday living. However,
those who interpreted dependence as an obstacle did
not experience increased participation. They
expressed that the helper did everything for them
and therefore participation was lost. One of the parti­
cipants expressed the support and assistance as humi­
liating. It was degrading to be dependent on another
person in everyday life, e.g. being dressed, bathed, etc.
“Yeah it was very uncomfortable too. And even
dressing, becomes difficult . . . . You have to depend
on someone to dress you. Just to dress you, yeah.”
(Participant 9)
Almost all participants felt dependent when they
needed to move somewhere. Being unable to drive a
car was perceived as a major limitation that contrib­
uted to restricted participation in everyday life.
Several of the participants said that it was too expen­
sive to take taxis everywhere they wanted to go.
Instead, they had to miss out on the activities that
they felt were important. The participants either
depended on another person or had to pay to move
from one place to another. Spontaneity in planning
was lost, with a reduced sense of freedom and
independence.
“Yes driving . . . . Mmm cause now I have to, depend on a
driver, the taxi. Uh I don’t like that . . . . I lost my free­
dom.” (participant 9)
“Hiring vehicles, OT this day, we have a clinic, we have
what we have, what is, so we cannot afford.” (participant
1)
The participants expressed that the lack of money
was a limiting factor, and they could not get
involved in the activities that they wanted to do.
They also described how they were short of money
and had to choose between medication and rehabi­
litation. The lack of money made it difficult since
they needed to pay for the rehabilitation service,
added to the high costs of transportation to get to
the rehabilitation clinic.
488 J. KAMWESIGA ET AL.
“So when I get money, we come. When I don’t
have money, I don’t come.” (participant 5)
Several of the participants had lost their role as
revenue earners, and instead they were dependent
on others to support the family, which affected
them negatively.
“Because it has brought in the poverty. Because
before they were just relying on me. Again, I was a
very different person.” (participant 3).
Participants who were unable to return to work lost
their important role as breadwinner, which appeared
to lower their self-esteem and satisfaction with life.
Overall, the people described that their partici­
pation in everyday life had changed and been
affected after their stroke, but it had also had a
major impact on the lives of their families.
Discussion
The findings of the present study revealed experi­
ences of participation in everyday life by people
living in Nairobi, Kenya who had had a stroke,
and described three categories of experiences as: a
sense of satisfaction at being involved in everyday
life; challenges in doing everyday activities and social
participation; and dependence as enabling or hinder­
ing participation. The findings disclosed that the
participants felt grateful and satisfied for being
involved in daily activities in different ways. They
described that they had come to some acceptance of
their present life situations and living with restric­
tions in participation after stroke. They had come
to accept the challenges and limitations in perform­
ing daily activities and participation in everyday
life. They also described different aspects of depen­
dence that enabled or hindered them, and the way
in which that impacted their participation in every­
day life. Acceptance of the changes after stroke
appeared to encourage the participants to test and
challenge themselves in activities and in using new
strategies, e.g. performing activities while sitting
instead of standing.
To belong to a patient organization such as SAK
seemed be a sign of acceptance of the change that
the stroke had inflicted on everyday life. In the
following, we discuss some of these findings of
experiences of participation in everyday life after
stroke in Nairobi, Kenya that might also be relevant
also for other LMICs.
The participants experienced challenges in parti­
cipation after stroke, such as having to stay at home,
which is in line with another study conducted in
Rwanda,22 describing that isolation in the home
can mean less participation in everyday life and
fewer social relationships. Our findings indicate a
decrease in social interaction as the friendship-
circles diminished. The participants were socially
withdrawn due to their disabilities caused by stroke,
which made taking part in everyday life even more
difficult. Visible disabilities, e.g. a strange gait or
unclear speech, could be daunting and difficult for
other people to interpret. This probably also
imposed restrictions in social participation, which
relatives and friends did not know how to deal
with. Eriksson and colleagues23 also found that
reduced functioning and change in everyday life
after a stroke affected social participation.
Furthermore, participation in activities could be
improved through interaction and communication
with friends.24 Some participants in the present
study mentioned that before they contacted SAK,
they experienced challenges in social interaction,
but through their contact with SAK, a contextual
environment where an understanding of stroke
already existed, the conditions for social participa­
tion increased and the risk of being misunderstood
decreased accordingly. By getting in touch with the
SAK and having contact with others who had had a
stroke, their view of themselves also changed, and
they had a new role as a SAK member.
The participants expressed that being involved in
the SAK enhanced their feeling of participation by
contributing with their own experiences of stroke
and encouraging other members who had had a
stroke to cope with daily activities. The fact that
their knowledge could help others to better under­
stand their own situation gave them satisfaction
and a sense of pride. This may well be what
Kielhofner3 has described as engaging activities in
the contextual description of the engaging activities
which have an inherently meaningful context that,
among other things, contributes to an enhanced
sense of conscientious purposefulness.
The respondents experienced that participation
created a commitment by dissemination of knowl­
edge about stroke and by encouragement of others.
Through commitment and the ability to contribute
with their knowledge within the SAK, the

participants felt that they had incorporated a new
role. They were engaging in a social context where
other people could confirm and define their new
role.24 In this context, the participants had turned
to a group of people who were in a similar situation
to themselves and jointly they confirmed their new
roles, which they reported as enhancing their feel­
ings of importance and satisfaction with everyday
life. These findings confirm the importance of peer
support created by people with similar experiences.
Peer-support groups have been shown to increase
participants’ self-efficacy25. Furthermore, we pro­
pose that peer support groups might be of particu­
lar importance for people with disabilities in LMIC,
as commonly they have low access to rehabilitation
and support. Hence organizations such as the SAK
can provide a way to spread knowledge about
stroke, as well contribute to increased participation
and self-efficacy for people who live with the con­
sequences of stroke.
Lack of rehabilitation in this study was evident; the
participants would have benefited from rehabilitation
after stroke to enable them to find new strategies
earlier. The participants described how other people
in the vicinity were enablers and a resource to their
likelihood of participating in everyday life. Living so
close to one’s family, i.e. in extended families, as many
do in Kenya and other LMICs, can be an asset for
participation in everyday life. One important finding
was that the strategy of involving family members in
the rehabilitation process could be beneficial if it was
given more emphasis. Family members can provide
support to people who have had a stroke and hence
contribute to their rehabilitation as described in a
Ugandan study.11 Family involvement can encourage
people who have had a stroke to perform activities at
the right level of challenge, and to become active in
their everyday lives.11,26 In this way, and in such
contexts, healthcare policy makers should plan to
make resources available for more rehabilitation
through including the family.
Being no longer able to drive a car and instead
being dependent on someone driving them was
perceived as restricting participation. The ability to
drive was something that previously had been taken
for granted, whereas not being able to drive any
more induced a great loss of freedom. Both partici­
pating in leisure activities, such as going to church,
and necessary activities, such as going to the grocery
TOPICS IN STROKE REHABILITATION 489
store for food or the pharmacy for, were affected by
no longer being able to drive. Some places necessi­
tated the participants to get there by car since the
availability of public transportation was limited.
Furthermore, public transport required assistance
from someone, and this contributed to the experi­
ence of diminished everyday life. Similar findings
have previously been reported when people found it
difficult to get back to driving after a stroke, which
restricted participation in leisure activities.27
The participants reported that their socio-
economic situation controlled to what extent and
which activities they could participate in, and that
they were forced to make choices and to prioritize.
The situation of reduced family income also created
difficulties in paying for medication and transpor­
tation, which was also the experience of caregivers
to people who had had a stroke in Uganda.11 The
participants knew that attending rehabilitation ser­
vices could possibly improve their opportunities for
a more active life, but their financial situation did
not allow them to buy healthy food, prescribed
drugs for prevention of secondary stroke, as well
as to take taxis to hospital for rehabilitation.
Another reason why rehabilitation was not prior­
itized might be that the healthcare system in Kenya is
organized to advocate medication before rehabilita­
tion. Nixon et al.28 described that the reason for
referrals for rehabilitation was not for preventive pur­
poses but when other treatments were not working. In
a previous study on how care costs affect Kenyan
households, there was a gap in accessibility and
affordability of services across all types of care, parti­
cularly when it came to rehabilitation as a preventive
or promotional measure.29 Ilinca et al.16 found that
people with poorer finances did not use care in the
same way as those with a better economic situation,
which is not just applicable Kenya but worldwide, as a
higher socio-economic status is known to be one of
the social determinants of a person’s health.30
Study limitations
There are some limitations to this study that should
be taken into consideration when interpreting and
transferring the present findings to other cultural
contexts. The fact that all participants were members
of the SAK, with some knowledge about stroke and
access to peer-support, might have affected the
490 J. KAMWESIGA ET AL.
experiences they shared, and is hence a limitation. It
is likely that people living with the aftermath of
stroke in Kenya, and who are not members of a
stroke organization, may have experiences that the
present study does not capture. Another limitation
could be that in some of the interviews, a relative or
caregiver who was present answered the questions
when the participants themselves were not able do
so. This might have influenced how the experiences
were presented and it might have been the perspec­
tive of the relative/caregiver, and not entirely that of
the participant who had had a stroke. However, it
could also reflect the culture and the common way of
living close to the family, i.e. the extended family,
which is a very central structure in Kenya. The family
relationships varied between the study participants;
some lived in the same household, others did not,
which might have affected the participants’ experi­
ences. For example, the economic situation might
depend on how many people there are in the house­
hold to provide for, and how many there are who can
provide. Another living condition that should be
considered when interpreting the findings is that all
participants were living in the city and the surround­
ings areas of Nairobi. The differences between living
centrally in a city compared to living in the rural
countryside can be huge, as for example, distances to
hospitals, shops and the church, could differ
markedly.
Conclusion
The participants living in Nairobi, Kenya, all
members of a patient organization, described
how they were affected after stroke. However,
their everyday lives were experienced to be “as
good as possible.” Being dependent on another
person was perceived as an obstacle to participa­
tion in everyday activities, and it could be
experienced as humiliating not to be indepen­
dent. Yet, being able to depend on a person’s
support could also be experienced as a resource
that enables a sense of participation. Seeing
resources instead of obstacles was expressed as
increasing participation and experienced as
enhancing opportunities of becoming indepen­
dent. Belonging to patient association proved to
be important for experiencing participation in
several ways, e.g. providing new roles, sharing
experiences, peer-support and recognition.
Abbreviations
Activities of daily living (ADL)
High-Income Countries (HIC)
Kenya Medical Training College (KMTC)
Low- and Middle-Income Countries (LMIC)
Stroke Association of Kenya (SAK)
Acknowledgments
The authors would like to express gratitude to the participants
and their families for their active participation in the inter­
views and sharing their experiences. We will also specifically
acknowledge the research assistants: Miriam Elmberg who
conducted the interviews in Nairobi, and Mimmi Källström
and Julia Ulvhag for conducting the first data analysis in
relation to the aim of this study. We would also like to
acknowledge the Stroke Association of Kenya, which invited
people with stroke and their caregivers from the community to
voluntarily participate in this study.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Funding
The funding bodies had no role in the design of the study,
data collection, analysis, interpretation of data or in writ­
ing the manuscript. The Linnaeus Palme International
Exchange Programme between the occupational therapy
programmes at: (a) The Occupational Therapy School at
the Kenya Medical Training College and (b) Karolinska
Institutet (KI), Stockholm, Sweden funded the travel to
Kenya for the authors SG and LvK. One of the research
assistants was supported by a SIDA’s Minor Fields Study
grant. A funded scholarship for field studies with the
purpose to give an opportunity to learn more about low-
and middle-income countries, development issues, and to
promote internationalization, and could within her study
conduct the data collection also used in this study. Open
Access funding was provided by Karolinska Institutet.
ORCID
Julius Kamwesiga http://orcid.org/0000-0002-4884-067X
Aileen Bergström http://orcid.org/0000-0002-7091-7514
Lena von Koch http://orcid.org/0000-0002-8560-3016
Susanne Guidetti http://orcid.org/0000-0001-6878-6394

Ethics approval and consent to participate
The unit Kenyatta National Hospital/University of Nairobi -
Ethics & Research Committee for ethical approval in Kenya was
contacted in order to apply for ethical permit. We were informed
that ethical approval was not required for this study as all of the
participants were living in the community, and they were not
patients as such anymore. Further, all of them were invited by
SAK to the organized open seminar and participated voluntarily.
However, the Declaration of Helsinki as a statement of ethical
principles for medical research was followed. Before data collec­
tion in the present study was made, all of the participants were
given both oral and written information about the aim of the
study, purpose of the interview and data collection methods, as
well as methods for ensuring confidentiality. All participants also
signed a written informed consent form when they agreed to
participate in the study. The researcher clearly stated that they
answered the questions voluntarily and could decline answering.
Consent for publication
Not Applicable.
Availability of data and material
The data supporting the conclusions of this article are avail­
able from the corresponding author.
Authors’ contributions
SG was the project leader and, together with LvK, was respon­
sible for the study design. A research assistant collected the
data in Kenya. The first data analysis was conducted by
research assistants, AB and JK. SG, LvK and AB prepared the
manuscript. JK and BA contributed specifically with cultural
context competencies. All authors contributed to the review
and the editing of the manuscript.
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