To identify psychosocial needs, understand coping strategies, and highlight gaps in care experienced by stroke survivors with upper extremity (UE) motor deficits in the first two years after stroke.

Post-stroke rehabilitation for stroke survivors with UE motor deficits aims to optimize outcomes by addressing physical and cognitive impairments. Psychosocial needs and care experiences for this subpopulation are often overlooked. We aimed to identify psychological- and social-related challenges in stroke survivors in the first two years after stroke and highlight gaps in care.

Semi-structured interviews were conducted with stroke survivors with UE motor deficits enrolled in an observational stroke motor recovery trial. Open-ended questions related to psychosocial experiences and challenges. Mixed deductive-inductive qualitative analysis identified major themes in four categories: psychosocial challenges, coping strategies, healthcare experiences, and unanswered questions. Sub-themes were organized by category and counted by frequency. Frequencies were listed to illustrate which themes were most commonly reported.

32 participants were interviewed (age 58±17 years; 47% male). 97% of participants experienced psychosocial challenges after stroke. The average number of challenges was 3.3±1.8 (range 1-7), with the most common being loss of independence, driving and transportation barriers, and inability to work. A majority endorsed using self-initiated coping strategies, including improved personal health management, seeking support, and being resilient. Over half (65%) reported negative experiences in the post-acute healthcare system. Three-quarters endorsed having unanswered questions related to their stroke.

Stroke survivors with UE motor deficits experience psychosocial challenges in the first two years that extend beyond physical and cognitive limitations related to stroke. While some survivors employ self-initiated coping strategies, many report a lack of resources, negative healthcare experiences, and unanswered questions. An earlier and greater focus on the under-recognized psychosocial consequences of stroke during rehabilitation and in follow-up is needed to help connect stroke survivors with resources to address unmet needs.