Living with stroke-related visual impairment: a qualitative exploration of lived experience, self-management, and support needs.

Abstract

Stroke-related visual impairment (SRVI) is common but often under-recognised and inconsistently supported. While clinical features and acute rehabilitation are documented, less is known about how people live with SRVI over time or whether services meet changing needs. This study examined: (1) the daily impact of SRVI; (2) self-management strategies used; and (3) unmet support needs. Sixteen community-dwelling adults in Scotland participated in semi‑structured interviews (7 women; mean age 58.8 years; mean time post‑stroke 29.5 months). Purposive sampling captured variation in SRVI type and recovery stage. Data were analysed using the Framework Method. Participants then ranked 18 unmet needs generated from the dataset. Patient and public involvement supported design and interpretation. Three themes emerged: (1) Multidimensional impact: SRVI resulted in practical, emotional, and social consequences. (2) Self‑developed management strategies included compensatory, environmental, technological, and psychological strategies. (3) Unmet needs included delayed assessment, limited tailored information, and short‑term rehabilitation misaligned with long‑term recovery. Ranking prioritised early assessment, realistic expectations, and clear information. Participants demonstrated considerable resilience but reported substantial unmet needs, emphasising the need for integrated pathways offering timely assessment, accessible information, practical strategies, and sustained follow-up.