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

Disabil Rehabil. 2024 Sep 24:1-10. doi: 10.1080/09638288.2024.2404185. Online ahead of print.

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.

Keywords: Stroke; independent living; qualitative research; stroke rehabilitation; survivors; young adult.

Plain language summary

Young Adult Stroke Survivors face unique challenges due to their occupational, family, and personal commitments, resulting in unmet needs during stroke recovery and rehabilitation.Policymakers, healthcare providers and community organizations need to re-think follow-up and information provision, psychological/psychiatric care, and community support and resources for young adult stroke survivors.Centralization and integration of different community stroke services and resources specific to young stroke survivors are key in stroke rehabilitation and recovery pathways.