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Exploring the Poststroke Experiences and Needs of South Asian Communities Living in High-Income Countries: Findings from a Scoping Review

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Abstract

Despite the high prevalence of stroke among South Asian communities in high-income countries, a comprehensive understanding of their unique experiences and needs after stroke is lacking. This study aimed to synthesize the literature examining the experiences and needs of South Asian community members impacted by stroke and their family caregivers residing in high-income countries. A scoping review methodology was utilized. Data for this review were identified from seven databases and hand-searching reference lists of included studies. Study characteristics, purpose, methods, participant characteristics, results, limitations, recommendations, and conclusions were extracted. Data were analyzed using descriptive qualitative analysis. In addition, a consultative focus group exercise with six South Asian community members who had experienced a stroke and a program facilitator was conducted to inform the review interpretations. A total of 26 articles met the inclusion criteria and were analyzed. Qualitative analysis identified four descriptive categories: (1) rationale for studying the South Asian stroke population (e.g., increasing South Asian population and stroke prevalence), (2) stroke-related experiences (e.g., managing community support versus stigma and caregiving expectations), (3) stroke service challenges (e.g., language barriers), and (4) stroke service recommendations to address stroke service needs (e.g., continuity of care). Several cultural factors impacted participant experiences, including cultural beliefs about illness and caregiving. Focus group participants from our consultation activity agreed with our review findings. The clinical and research recommendations identified in this review support the need for culturally appropriate services for South Asian communities across the stroke care continuum; however, more research is necessary to inform the design and structure of culturally appropriate stroke service delivery models.

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Data Availability

Data included in this review includes published documents, which are available from research databases.

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Acknowledgements

We would like to thank Benjamin Walsh, User Services Librarian at the University of Toronto Libraries, for peer reviewing the search strategy and providing feedback. HS holds the March of Dimes Paul J.J. Martin Early Career Professorship at the University of Toronto.

Funding

Funding for this project is provided by the March of Dimes Paul J. J. Martin Early Career Professorship at the University of Toronto to H.S.

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Authors and Affiliations

  1. Department of Medicine, Geriatrics Program, Sinai Health System, University Health Network, Toronto, Canada

    Kristina M. Kokorelias

  2. Department of Occupational Science & Occupational Therapy, Temerty Faculty of Medicine, University of Toronto, Toronto, Canada

    Jill I. Cameron, Heather Colquhoun, Sarah E. P. Munce, Sander L. Hitzig, Rosalie H. Wang & Hardeep Singh

  3. The KITE Research Institute, Toronto Rehabilitation Institute-University Health Network, Toronto, Canada

    Jill I. Cameron, Nancy M. Salbach, Sarah E. P. Munce, Mark T. Bayley & Hardeep Singh

  4. Rehabilitation Sciences Institute, Temerty Faculty of Medicine, University of Toronto, Toronto, Canada

    Jill I. Cameron, Nancy M. Salbach, Heather Colquhoun, Sarah E. P. Munce, Sander L. Hitzig, Mark T. Bayley, Rosalie H. Wang & Hardeep Singh

  5. Department of Physical Therapy, Temerty Faculty of Medicine, University of Toronto, Toronto, Canada

    Nancy M. Salbach & Navaldeep Kaur

  6. Institute for Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, Canada

    Sarah E. P. Munce, Michelle L. A. Nelson & Carolyn Steele Gray

  7. Lunenfeld-Tanenbaum Research Institute, Sinai Health System, Toronto, Canada

    Michelle L. A. Nelson & Carolyn Steele Gray

  8. Gerstein Science Information Centre, University of Toronto Libraries, University of Toronto, Toronto, Canada

    Julia Martyniuk

  9. Institute for Better Health, Trillium Health Partners, Toronto, Canada

    Terence Tang

  10. St. John’s Rehab Research Program, Sunnybrook Research Institute, Sunnybrook Health Sciences Centre, Toronto, Canada

    Sander L. Hitzig

  11. Heart and Stroke Foundation, Toronto, Canada

    M. Patrice Lindsay

  12. Physical Medicine and Rehabilitation, University of Toronto, Toronto, Canada

    Mark T. Bayley

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  1. Kristina M. Kokorelias
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  15. Hardeep Singh
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Contributions

KMK: conceptualization, methodology, writing—first draft, and editing; JIC: methodology, writing—review and editing; NMS: methodology, writing—review and editing; HC: methodology, writing—review and editing; SEPM: methodology, writing—review and editing; MLAN: methodology, writing—review and editing; JM: methodology (search strategy formulation and database search), writing—review and editing; CSG: methodology, writing—review and editing; TT: methodology, writing—review and editing; SLH: methodology, writing—review and editing; PL: methodology, writing—review and editing; MB: methodology, writing—review and editing; RHW: methodology, writing—review and editing; NK: writing—review and editing; HS: conceptualization, methodology, project administration, supervision, writing—original draft, writing—review and editing.

Corresponding author

Correspondence to Hardeep Singh.

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Kokorelias, K.M., Cameron, J.I., Salbach, N.M. et al. Exploring the Poststroke Experiences and Needs of South Asian Communities Living in High-Income Countries: Findings from a Scoping Review. J. Racial and Ethnic Health Disparities 11, 1345–1373 (2024). https://doi.org/10.1007/s40615-023-01613-6

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