Experiences of participation in everyday activities for people with stroke in Nairobi, Kenya

ABSTRACT

Background

Stroke is currently one of the greatest causes of disability and death in Kenya. Previous research indicates a lack of knowledge regarding how participation in everyday life is experienced after a stroke in Sub-Sahara Africa.

Objectives

The aim was to explore and describe experiences of participation in everyday life for people who had had a stroke living in Nairobi, Kenya.

Methods

A qualitative study design using semi-structured interviews with nine people who have 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.

KEYWORDS:

• Activities of daily living
• occupational therapy
• stroke
• rehabilitation

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 interviews 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).

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 collection 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 available from the corresponding author.

Authors’ contributions

SG was the project leader and, together with LvK, was responsible 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.

Additional information

Funding

The funding bodies had no role in the design of the study, data collection, analysis, interpretation of data or in writing 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.