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

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.

Keywords: Caregivers; Ethnicity; Scoping review; Stroke.