Exploring the experiences of adults with stroke in virtual community-based stroke programs: a qualitative descriptive study

Abstract

Background Stroke is among the top contributors to disability and can impact an individual’s cognition, physical functioning, and mental health. Since the COVID-19 pandemic, several community-based organizations have started delivering stroke programs virtually. However, participants’ experiences in these programs remain understudied, and evidence-based guidelines to inform and optimize virtual stroke program development and delivery are lacking. Thus, this study aimed to describe the perspectives and experiences of individuals with stroke who participated in virtual community-based organization stroke programs, including perceived access and participation facilitators and barriers and suggestions for improving these programs. Methods A qualitative descriptive design was used to gather participant experiences through semi-structured interviews. Audio-recorded interviews were conducted on Zoom and transcribed verbatim. Adult participants who had experienced a stroke and attended at least one Canadian virtual community-based organization stroke program were recruited. Data were analyzed using inductive thematic analysis. Results Twelve participants (32–69 years, 2–23 years post-stroke, eight women and four men) participated in this study. Five themes were identified: (1) motives to join virtual community-based organization stroke programs, including gaining peer connections, knowledge and information; (2) perceived barriers to accessing and participating in virtual community-based organization stroke programs, including technology inequities, difficulties navigating technology, and inadequate facilitation; (3) perceived facilitators to accessing and participating in virtual community-based organization stroke programs, including remote access, virtual platform features and program leader characteristics/skills; (4) unmet needs during virtual community-based organization stroke programs, including in-person connection and individualized support; and (5) suggestions and preferences for improving virtual community-based organization stroke programs, including program facilitation, content and format. Conclusions Study findings highlight opportunities to improve virtual community-based organization stroke programs to optimize participant experiences and outcomes. Addressing the barriers and suggestions identified in this study may improve virtual community-based organization stroke programs’ access and quality.