A qualitative study exploring the experiences of individuals living with stroke and their caregivers with community-based poststroke services: A critical need for action

Abstract

Background Unmet poststroke service needs are common among people living in the community. Community-Based Stroke Services (CBSS) have the potential to address these unmet needs, yet there are no comprehensive guidelines to inform the design of CBSS, and they remain an understudied aspect of stroke care. This study aimed to describe the perceived barriers to accessing community-based stroke services, benefits from these programs and opportunities to address unmet needs. Methods This was a qualitative descriptive study with interviews and focus groups conducted with people living with stroke and caregivers. Data were transcribed and analyzed thematically. Results Eighty-five individuals with stroke and caregivers participated. Four key overarching themes were identified: facilitators and barriers to accessing and participating in community-based stroke services; components of helpful and unhelpful stroke services; perceived benefits of community-based stroke services; and opportunities to address unmet stroke service needs. Interpretations The findings resonate with and extend prior literature, suggesting a critical need for personalized and tailored stroke services to address persistent unmet needs. We call on relevant stakeholders, such as policymakers, providers, and researchers, to move these insights into action through comprehensive guidelines, practice standards and interventions to personalize and tailor CBSS.