“I just kept asking and asking and there was nothing”: re-thinking community resources & supports for young adult stroke survivors

Abstract

Purpose Stroke is often regarded as a disease of the elderly. However, 10–15% of strokes occur in people aged 18 to 50, and rates continue to rise. Young stroke survivors face unique challenges due to their occupational, family and personal commitments, which current stroke rehabilitation services may not fully address. Our qualitative study aimed to identify gaps in patient care and resources for young stroke survivors. We used these findings to develop recommendations to inform clinical care, healthcare system design, and health policy. Methods Using Interpretive Description, we conducted semi-structured interviews with 19 stroke survivors aged 18–55 living in British Columbia, Canada, to explore their experiences during stroke recovery and assess current gaps in support and resources. We applied broad-based coding and thematic analysis to the transcripts. Results Key themes included: (1) the need for longitudinal medical follow-up and information provision, (2) the need for psychological/psychiatric care, (3) the need to adapt community supports and resources to young survivors, and (4) the need to centralize and integrate community stroke services and resources. Conclusion Young stroke survivors experience unique challenges and lack appropriate services and resources. Many of our findings may be representative of remediable gaps that persist nationally and internationally.