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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Published online: 30 Apr 2022.

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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 tioners, as well as among those affected, is also
transition, which is driven by changes in socio- limited.7,8
Recovery after a stroke is often demanding and
demography and lifestyle,1,2 and non-communicable
can take a long time. After a stroke, it is common
diseases (NCDs) have increased in Africa.3 Stroke
for the person to experience a changed life situa­
causes more deaths and disabilities in low-income
tion, requiring them to learn to adapt to the new
countries than in high-income countries (HIC).4 In
situation.9–11 Activities that have previously been
low- and middle-income countries (LMIC), infectious taken for granted may, for some people, be impos­
diseases are often prioritized, resulting in the fact that sible to perform in the same way as before.9,10,12
resources allocated for stroke prevention and treat­ The feeling of satisfaction at being able to parti­
ment are limited.5,6 Today, stroke is one of the leading cipate in desired everyday activities, such as taking
causes of death in Kenya.5,6 However, the clinical care of oneself and one’s household, as well as
epidemiological data available on stroke in Africa to participation in social and leisure activities, may
adequately inform various efforts for effective care and be affected by limitations in physical capacity
rehabilitation is limited.7 Moreover, research on because of stroke.9,12 In a study from Uganda, the
stroke rehabilitation in an African context is lacking 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 and describe experiences of participation in every­
ited participation in daily life.7 Most household day life for people living in Nairobi, Kenya who
activities, such as washing clothes, retrieving water have had a stroke.
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 Method
Different roles related to activity in everyday life Design
may be disrupted or completely lost after having a
stroke, and the person may experience restrictions A qualitative interview study.
in participation.7,11 Not being able to live up to
expected roles or being unable to perform activities Study setting and participants
of daily living (ADL) independently, could contri­
bute to a reduced quality of life.7,13 A study in In November 2018, members of the Stroke
Kenya showed that young people with stroke Association of Kenya (SAK), comprised of people
experienced, among other things, difficulties in who had had a stroke, caregivers, spouses, parents,
maintaining the roles they had before the illness.14 children, and siblings, were invited to participate in
Studies from Kenya and Uganda have shown that a seminar about stroke. The invitation also
there was a need for a role shift when becoming the included information about the possibility for
caregiver through having to take great responsibil­ stroke victims, alone or together with caregivers,
ity for the person who had had a stroke and that to take part in an interview about experiences of
person’s health.9,11,15 participation in everyday life after stroke. Thirty
In many African countries, economic factors are people who had had a stroke provided their tele­
a major hindrance to seeking healthcare and reha­ phone numbers at the seminar, indicating willing­
bilitation after stroke. The fees for healthcare are ness to be contacted to participate in the study. The
high, and most people cannot afford the care they inclusion criteria for participants with stroke were:
need. People who were disadvantaged financially 1) stroke diagnosis, 2) no psychiatric diagnosis, and
were, generally, in greater need of care but in the 3) ability to understand and respond to instructions
absence of assets they chose not to seek it.9,16 The in English, or local language. All participants were
person who has had a stroke and the family need to living in the community, all were members of SAK
take responsibility for attaining rehabilitation.7–9 and participated voluntarily.
However, it is not only about the fees, but also
about being able to transport oneself to care and
Data collection
rehabilitation. Moreover, access to rehabilitation
services is inadequate due to the low number of A researcher assistant sought contact with all parti­
rehabilitation professionals. cipants who had provided their telephone numbers
In summary, access to stroke rehabilitation is at the seminar. Nine people were reached and
limited in low-income countries in Sub-Sahara agreed to participate. The interviews conducted by
Africa17 e.g. Kenya. For people who have had a the research assistant took place in the participants’
stroke, participation in meaningful everyday life homes or at the campus of Kenya Medical Training
activities is an important goal for successful reha­ College (KMTC) in Nairobi. Four of the nine par­
bilitation. However, available knowledge regarding ticipants were accompanied by their caregivers
everyday life after stroke is based on studies from (n = 5), who also participated in the interviews.
HIC and findings may not be applicable to people Therefore, verbal, and written information
living with a low-income in an African context. regarding the study and consent was sought from
Hence, further studies of everyday life after stroke both the person who had had a stroke and their
in an African context could help demonstrate the accompanying caregivers (n = 14). A semi-
need for improved rehabilitation services. structured interview guide (Appendix 1) with
Therefore, the purpose of this study was to explore 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 life after stroke and of living with the restrictions in
applied19 by the authors. Initially, all interviews participation that they experienced. They had come
were read through to get a grasp of the material, a to understand their challenges and limitations in
sense of the whole, and a general understanding of performing daily activities and participating in
descriptions of the participants’ experiences of taking everyday life. They expressed that they had
part in everyday activities was obtained. The next accepted their lives, despite meeting difficulties in
step was to condense sentence-units to codes. carrying out activities with a sense of participation,
Similarities and differences between the codes were regardless of limitations. By changing their way of
analyzed and thereafter divided into categories.19 thinking, they created conditions for experiences of
Quotes were selected from the interviews to ensure satisfaction. Limitations in performance of every­
the credibility of the results.16 This was a process of day activities enabled the participants to think of
further abstraction of data at each step of the analysis, new ways to manage the activities.
from the manifest and literal content to latent mean­ “But after some time, as I was coming to . . . my
ings. These findings, together with the reflections rehab and I was taught you know, these occupa­
from the first author (who had a familiarity and tional (therapists) they really taught me, they really
cultural awareness of East Africa), and the sample taught me, they told me ey, don’t accept everything to
in the study were discussed with all authors as an be done for you – do it yourself . . . . And I started
experienced research group, in a structure of infor­ doing things myself. Then slowly I increased my
mal triangulation.20 Moreover, to enhance quality independence.” (participant 4)
and transparency, the study was reported in confor­ “To have a positive attitude towards life . . . . Eh
mance with the consolidated criteria for reporting . . . and to accept any situation as it comes . . . . Mmm
qualitative research (COREQ) Guidelines.21 to accept it and move on!” (participant 8)
When they successfully performed desired activ­
ities, activities they needed and wanted to do, it
Results
brought motivation and gave them hope and
The demographics of the nine participants are impetus to achieve independent living. By not
described in Table 1. accepting help from other people to do things,
Three categories were identified from the analy­ and challenging themselves in more demanding
sis of the interviews with the participants: 1) A sense activities, a greater participation and increased
of satisfaction at being involved in everyday life, 2) satisfaction in everyday life was achieved.
Challenges in doing everyday activities and social
participation, and 3) Dependence as enabling or
A sense of satisfaction at being involved in everyday
hindering participation.
life
The analysis revealed that the participants felt
thankful for being involved in daily activities in The participants expressed how they slowly, and
different ways. The participants described that through repetition, became familiar with perform­
they had come a long way in their acceptance of ing their daily activities again after they had had a
486 J. KAMWESIGA ET AL.

stroke. The experience of performing activities by meaningful for several of the participants, as this
themselves also increased their sense of participat­ gave them opportunities to supply peer-support to
ing in everyday life. One participant expressed that others who had had a stroke. They provided sup­
it was important to contribute to the family’s every­ port by using their own experiences as examples of
day life, even if it was just to help cook rice for how to get involved and participate in everyday life.
dinner. By participating in home chores, the parti­ The feeling of being able to help and encourage
cipants who had had a stroke felt important and as others who were in the same situation as they had
being part, of and belonging to, the family. One once been, was perceived as very satisfying.
participant described that through involvement in Working for the SAK also entailed the task of
home chores, he had also learned to handle almost spreading vital information about stroke and life
all cooking independently. after stroke, which was expressed as promoting a
sense of satisfaction. One of the participants felt
“It has changed, what else. I told you nowadays, after I
have improved, I can do most of the cooking, I like doing
that the illness had an inherent meaning.
it myself.” (participant 7)
“So I find I’m able to help, to reach out to more people,
The experience of being independent was some­ encourage them and think, I find a lot of . . . fulfilment in
thing that helped the person who had had a stroke that . . . . Being active and reaching out. Being able to be
to feel important and more involved in everyday there for someone else even with my limitations.” (partici­
pant 9)
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
Challenges in doing everyday activities and
when they tried to carry out activities on their social participation
own, it also resulted in increased participation and
the feeling of being satisfied with themselves. Many participants experienced it as challenging to
carry out daily activities, e.g. washing and preparing
“And I started doing things myself. Then slowly I
increased my independence.” (participant 4)
food. They expressed that lost hand function was
contributing to restricted participation in doing
“But if it’s something that I can do on my own I take care things since many activities required the use of two
of that.” (participant 2)
hands. All the female participants expressed how
Returning to the previous work that the partici­ they were no longer able to use their hands at an
pants had before stroke gave them great satisfac­ optimal level and therefore had lost their expected
tion. It was a good opportunity to participate in an and desired roles as cook for their family members.
activity that was valued by the participants. Two of One participant described her experience as follows;
the participants mentioned that their former “I prepare my own food . . . . It is sometimes a
employers had made changes in their work tasks, challenge, but I, but I do . . . . Mmm taking food from
which facilitated and enabled participation in their the plate was a problem. Even right now sometimes.
work situation. One person was satisfied with his The right hand does not work properly.” (participant 8)
new work situation and liked to work part time. “Sometimes even I do the dishes and wipe the
“Now I prefer to teach part-time . . . . I really, my dishes but, I have to be sitting because when I
feeling really got a lot of empowerment. Cause now I stand, it becomes very heavy.” (participant 7)
am interacting with other students.” (participant 9) One wife to the person who had had a stroke
The adaptation of the work made it possible for expressed that:
these participants to experience their work as satis­ “You know he uses one hand, this one he does not
factory. Several participants had found new ways of use . . . . Yes he uses the left hand to feed himself.”
living where they felt involved and gained a sense of (wife participant 1).
satisfaction; some had, for example, started their Impaired hand function was a challenge and
own businesses. Working for the association SAK seemed to restrict participants’ taking part in both
(Stroke Association of Kenya) proved to be the food situation and in the work situation.
 TOPICS IN STROKE REHABILITATION 487

The experience of no longer being able to inter­ “Because I can’t wash myself, so she has to help
act and socialize as before was conveyed as challen­ me. Dressing . . . She dries my body with the towel,
ging and contributed to a decrease in social she dresses with other clothes.” (participant 3)
participation. Several participants expressed the Some participants described the dependence on
challenge of not being able to move and socialize. another person as a resource, while other participants
They stated that they stayed at home all the time perceived it as an obstacle. The participants who
and hence were less involved in social interactions interpreted dependence as a resource felt that the
and missed out on making new community rela­ assistance from another person promoted their parti­
tionships. Furthermore, they reported a challenge cipation, and that together they created the conditions
to interact with old friends since it seemed as for the person to cope in everyday living. However,
though the friends did not know how to respond those who interpreted dependence as an obstacle did
not experience increased participation. They
to the person’s changes after the stroke.
expressed that the helper did everything for them
One participant expressed: “Because I can’t meet
and therefore participation was lost. One of the parti­
friends. And some friends when you are sick they
cipants expressed the support and assistance as humi­
cannot move near you.” (participant 3). When the
liating. It was degrading to be dependent on another
participants stayed at home, they experienced that a
person in everyday life, e.g. being dressed, bathed, etc.
social distance was created through a lack of under­
“Yeah it was very uncomfortable too. And even
standing of their problems after stroke.
dressing, becomes difficult . . . . You have to depend
“Yes, yes he has changed because now he has
on someone to dress you. Just to dress you, yeah.”
changed his friends. The friends that used to be
(Participant 9)
there are not there anymore. So most of the times
Almost all participants felt dependent when they
the TV is his friend.” (wife of participant 5)
needed to move somewhere. Being unable to drive a
Some of the participants mentioned that before
car was perceived as a major limitation that contrib­
they had contacted SAK, they found social interac­
uted to restricted participation in everyday life.
tions challenging. Their contact with SAK, a con­
Several of the participants said that it was too expen­
text where there was a good understanding of
sive to take taxis everywhere they wanted to go.
stroke, increased their social participation. The
Instead, they had to miss out on the activities that
contact with others who had had a stroke and the
they felt were important. The participants either
new role as an SAK member, changed their view of
depended on another person or had to pay to move
themselves.
from one place to another. Spontaneity in planning
was lost, with a reduced sense of freedom and
The dependence as enabling or hindering independence.
participation “Yes driving . . . . Mmm cause now I have to, depend on a
driver, the taxi. Uh I don’t like that . . . . I lost my free­
The participants described different aspects of
dom.” (participant 9)
dependence that enabled or hindered their partici­
pation in everyday life. Some participants expressed “Hiring vehicles, OT this day, we have a clinic, we have
how they were dependent on other people to per­ what we have, what is, so we cannot afford.” (participant
1)
form ADL. They needed support to cope with toilet
visits or when shopping. Other participants were The participants expressed that the lack of money
dependent on others to finish activities. was a limiting factor, and they could not get
“When I do the washing, I’m done with my wash­ involved in the activities that they wanted to do.
ing, ready to put my clothes on the hanging line. I They also described how they were short of money
must call someone to come and help me with the and had to choose between medication and rehabi­
hanging.” (participant 2) litation. The lack of money made it difficult since
One person described the need of assistance in they needed to pay for the rehabilitation service,
dressing and showering. Another person expressed added to the high costs of transportation to get to
their need of support as the rehabilitation clinic.
488 J. KAMWESIGA ET AL.

“So when I get money, we come. When I don’t The participants experienced challenges in parti­
have money, I don’t come.” (participant 5) cipation after stroke, such as having to stay at home,
Several of the participants had lost their role as which is in line with another study conducted in
revenue earners, and instead they were dependent Rwanda,22 describing that isolation in the home
on others to support the family, which affected can mean less participation in everyday life and
them negatively. fewer social relationships. Our findings indicate a
“Because it has brought in the poverty. Because decrease in social interaction as the friendship-
before they were just relying on me. Again, I was a circles diminished. The participants were socially
very different person.” (participant 3). withdrawn due to their disabilities caused by stroke,
Participants who were unable to return to work lost which made taking part in everyday life even more
their important role as breadwinner, which appeared difficult. Visible disabilities, e.g. a strange gait or
to lower their self-esteem and satisfaction with life. unclear speech, could be daunting and difficult for
Overall, the people described that their partici­ other people to interpret. This probably also
pation in everyday life had changed and been imposed restrictions in social participation, which
affected after their stroke, but it had also had a relatives and friends did not know how to deal
major impact on the lives of their families. with. Eriksson and colleagues23 also found that
reduced functioning and change in everyday life
after a stroke affected social participation.
Discussion
Furthermore, participation in activities could be
The findings of the present study revealed experi­ improved through interaction and communication
ences of participation in everyday life by people with friends.24 Some participants in the present
living in Nairobi, Kenya who had had a stroke, study mentioned that before they contacted SAK,
and described three categories of experiences as: a they experienced challenges in social interaction,
sense of satisfaction at being involved in everyday but through their contact with SAK, a contextual
life; challenges in doing everyday activities and social environment where an understanding of stroke
participation; and dependence as enabling or hinder­ already existed, the conditions for social participa­
ing participation. The findings disclosed that the tion increased and the risk of being misunderstood
participants felt grateful and satisfied for being decreased accordingly. By getting in touch with the
involved in daily activities in different ways. They SAK and having contact with others who had had a
described that they had come to some acceptance of stroke, their view of themselves also changed, and
their present life situations and living with restric­ they had a new role as a SAK member.
tions in participation after stroke. They had come The participants expressed that being involved in
to accept the challenges and limitations in perform­ the SAK enhanced their feeling of participation by
ing daily activities and participation in everyday contributing with their own experiences of stroke
life. They also described different aspects of depen­ and encouraging other members who had had a
dence that enabled or hindered them, and the way stroke to cope with daily activities. The fact that
in which that impacted their participation in every­ their knowledge could help others to better under­
day life. Acceptance of the changes after stroke stand their own situation gave them satisfaction
appeared to encourage the participants to test and and a sense of pride. This may well be what
challenge themselves in activities and in using new Kielhofner3 has described as engaging activities in
strategies, e.g. performing activities while sitting the contextual description of the engaging activities
instead of standing. which have an inherently meaningful context that,
To belong to a patient organization such as SAK among other things, contributes to an enhanced
seemed be a sign of acceptance of the change that sense of conscientious purposefulness.
the stroke had inflicted on everyday life. In the The respondents experienced that participation
following, we discuss some of these findings of created a commitment by dissemination of knowl­
experiences of participation in everyday life after edge about stroke and by encouragement of others.
stroke in Nairobi, Kenya that might also be relevant Through commitment and the ability to contribute
also for other LMICs. with their knowledge within the SAK, the
 TOPICS IN STROKE REHABILITATION 489

participants felt that they had incorporated a new store for food or the pharmacy for, were affected by
role. They were engaging in a social context where no longer being able to drive. Some places necessi­
other people could confirm and define their new tated the participants to get there by car since the
role.24 In this context, the participants had turned availability of public transportation was limited.
to a group of people who were in a similar situation Furthermore, public transport required assistance
to themselves and jointly they confirmed their new from someone, and this contributed to the experi­
roles, which they reported as enhancing their feel­ ence of diminished everyday life. Similar findings
ings of importance and satisfaction with everyday have previously been reported when people found it
life. These findings confirm the importance of peer difficult to get back to driving after a stroke, which
support created by people with similar experiences. restricted participation in leisure activities.27
Peer-support groups have been shown to increase The participants reported that their socio-
participants’ self-efficacy25. Furthermore, we pro­ economic situation controlled to what extent and
pose that peer support groups might be of particu­ which activities they could participate in, and that
lar importance for people with disabilities in LMIC, they were forced to make choices and to prioritize.
as commonly they have low access to rehabilitation The situation of reduced family income also created
and support. Hence organizations such as the SAK difficulties in paying for medication and transpor­
can provide a way to spread knowledge about tation, which was also the experience of caregivers
stroke, as well contribute to increased participation to people who had had a stroke in Uganda.11 The
and self-efficacy for people who live with the con­ participants knew that attending rehabilitation ser­
sequences of stroke. vices could possibly improve their opportunities for
Lack of rehabilitation in this study was evident; the a more active life, but their financial situation did
participants would have benefited from rehabilitation not allow them to buy healthy food, prescribed
after stroke to enable them to find new strategies drugs for prevention of secondary stroke, as well
earlier. The participants described how other people as to take taxis to hospital for rehabilitation.
in the vicinity were enablers and a resource to their Another reason why rehabilitation was not prior­
likelihood of participating in everyday life. Living so itized might be that the healthcare system in Kenya is
close to one’s family, i.e. in extended families, as many organized to advocate medication before rehabilita­
do in Kenya and other LMICs, can be an asset for tion. Nixon et al.28 described that the reason for
participation in everyday life. One important finding referrals for rehabilitation was not for preventive pur­
was that the strategy of involving family members in poses but when other treatments were not working. In
the rehabilitation process could be beneficial if it was a previous study on how care costs affect Kenyan
given more emphasis. Family members can provide households, there was a gap in accessibility and
support to people who have had a stroke and hence affordability of services across all types of care, parti­
contribute to their rehabilitation as described in a cularly when it came to rehabilitation as a preventive
Ugandan study.11 Family involvement can encourage or promotional measure.29 Ilinca et al.16 found that
people who have had a stroke to perform activities at people with poorer finances did not use care in the
the right level of challenge, and to become active in same way as those with a better economic situation,
their everyday lives.11,26 In this way, and in such which is not just applicable Kenya but worldwide, as a
contexts, healthcare policy makers should plan to higher socio-economic status is known to be one of
make resources available for more rehabilitation the social determinants of a person’s health.30
through including the family.
Being no longer able to drive a car and instead
Study limitations
being dependent on someone driving them was
perceived as restricting participation. The ability to There are some limitations to this study that should
drive was something that previously had been taken be taken into consideration when interpreting and
for granted, whereas not being able to drive any transferring the present findings to other cultural
more induced a great loss of freedom. Both partici­ contexts. The fact that all participants were members
pating in leisure activities, such as going to church, of the SAK, with some knowledge about stroke and
and necessary activities, such as going to the grocery access to peer-support, might have affected the
490 J. KAMWESIGA ET AL.

experiences they shared, and is hence a limitation. It several ways, e.g. providing new roles, sharing
is likely that people living with the aftermath of experiences, peer-support and recognition.
stroke in Kenya, and who are not members of a
stroke organization, may have experiences that the
present study does not capture. Another limitation Abbreviations
could be that in some of the interviews, a relative or Activities of daily living (ADL)
caregiver who was present answered the questions High-Income Countries (HIC)
when the participants themselves were not able do Kenya Medical Training College (KMTC)
so. This might have influenced how the experiences Low- and Middle-Income Countries (LMIC)
Stroke Association of Kenya (SAK)
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 Acknowledgments
could also reflect the culture and the common way of
The authors would like to express gratitude to the participants
living close to the family, i.e. the extended family,
and their families for their active participation in the inter­
which is a very central structure in Kenya. The family views and sharing their experiences. We will also specifically
relationships varied between the study participants; acknowledge the research assistants: Miriam Elmberg who
some lived in the same household, others did not, conducted the interviews in Nairobi, and Mimmi Källström
which might have affected the participants’ experi­ and Julia Ulvhag for conducting the first data analysis in
ences. For example, the economic situation might relation to the aim of this study. We would also like to
depend on how many people there are in the house­ acknowledge the Stroke Association of Kenya, which invited
people with stroke and their caregivers from the community to
hold to provide for, and how many there are who can
voluntarily participate in this study.
provide. Another living condition that should be
considered when interpreting the findings is that all
participants were living in the city and the surround­ Disclosure statement
ings areas of Nairobi. The differences between living
No potential conflict of interest was reported by the author(s).
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 Funding
markedly.
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
Conclusion
Exchange Programme between the occupational therapy
The participants living in Nairobi, Kenya, all programmes at: (a) The Occupational Therapy School at
members of a patient organization, described the Kenya Medical Training College and (b) Karolinska
Institutet (KI), Stockholm, Sweden funded the travel to
how they were affected after stroke. However,
Kenya for the authors SG and LvK. One of the research
their everyday lives were experienced to be “as assistants was supported by a SIDA’s Minor Fields Study
good as possible.” Being dependent on another grant. A funded scholarship for field studies with the
person was perceived as an obstacle to participa­ purpose to give an opportunity to learn more about low-
tion in everyday activities, and it could be and middle-income countries, development issues, and to
experienced as humiliating not to be indepen­ promote internationalization, and could within her study
conduct the data collection also used in this study. Open
dent. Yet, being able to depend on a person’s
Access funding was provided by Karolinska Institutet.
support could also be experienced as a resource
that enables a sense of participation. Seeing
resources instead of obstacles was expressed as ORCID
increasing participation and experienced as
Julius Kamwesiga http://orcid.org/0000-0002-4884-067X
enhancing opportunities of becoming indepen­ Aileen Bergström http://orcid.org/0000-0002-7091-7514
dent. Belonging to patient association proved to Lena von Koch http://orcid.org/0000-0002-8560-3016
be important for experiencing participation in Susanne Guidetti http://orcid.org/0000-0001-6878-6394
 TOPICS IN STROKE REHABILITATION 491

Ethics approval and consent to participate 4. Feigin VL, Stark BA, Johnson CO, GBD Stroke
Collaborators. Global, regional, and national burden of
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contacted in order to apply for ethical permit. We were informed Neurol. 2021;20(10):795–820. doi:10.1016/S1474-4422
that ethical approval was not required for this study as all of the (21)00252-0.
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patients as such anymore. Further, all of them were invited by global response is needed. 2016 Downloaded 2020-01-
SAK to the organized open seminar and participated voluntarily. 09 från https://www.who.int/bulletin/volumes/94/9/16-
However, the Declaration of Helsinki as a statement of ethical 181636/en/
principles for medical research was followed. Before data collec­ 6. Johnston SC, Mendis S, Mathers CD. Global variation in
tion in the present study was made, all of the participants were stroke burden and mortality: estimates from monitoring,
given both oral and written information about the aim of the surveillance, and modelling. The Lancet Neurology. 2009;8
study, purpose of the interview and data collection methods, as (4):345–354. doi:10.1016/S1474-4422(09)70023-7.
well as methods for ensuring confidentiality. All participants also 7. Kamwesiga JT, Von Kock L, Eriksson G, Guidetti S. The
signed a written informed consent form when they agreed to impact of stroke on people living in central Uganda: a
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Stroke types, risk factors, quality of care and outcomes
Consent for publication at a referral hospital in western Kenya. East African
Medical Journal. 2015;92(7):324–332. file:///C:/Users/
Not Applicable.
User/Downloads/123808-Article%20Text-338548-1-
10-20151014.pdf
9. Elmberg Sjöholm M, Eriksson G, Bii A, Asungu J, von
Availability of data and material Koch L, Guidetti S. Living with consequences of stroke
and risk factors for unhealthy diet- experiences among
The data supporting the conclusions of this article are avail­
stroke survivors and caregivers in Nairobi, Kenya. BMC
able from the corresponding author.
Public Health. 21(1);511. PMID: 33726725. 2021 Mar
16. 10.1186/s12889-021-10522-4.
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Authors’ contributions study of a mobile phone supported family-centred ADL
SG was the project leader and, together with LvK, was respon­ intervention, F@ce™, after stroke in Uganda. Global
sible for the study design. A research assistant collected the Health. 2018;14(1):82.doi:10.1186/s12992-018-0400-7.
data in Kenya. The first data analysis was conducted by 11. Eriksson GM, Kamwesiga JT, Guidetti. S. The everyday
research assistants, AB and JK. SG, LvK and AB prepared the life situation of caregivers to 3 family members who
manuscript. JK and BA contributed specifically with cultural have had a stroke 4 and received the rehabilitation
context competencies. All authors contributed to the review intervention 5 F@ce in Uganda. Accepted in Archives
and the editing of the manuscript. of Public Health in May 2021. Archives of Public Health
79 1 10.1186/s13690-021-00618-z
12. Kamwesiga J, Tham K, Guidetti S. Experiences of using
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