Variation in stroke survivors’ long-term home care use: a South London population-based study

Abstract Introduction Policy shifts towards home-based care are reshaping the management of stroke survivors, many of whom require long-term support. Home care, which encompasses social care for personal and household tasks and informal care provided by family and friends, plays a crucial role in post-stroke recovery and community reintegration. This study examined home care use up to 15 years post-stroke and its associated factors, and assessed unmet needs for assistance with activities of daily living (ADLs). Patients and methods Data from 7885 stroke survivors in the South London Stroke Register (1995–2022) were analysed at 3 months, 1, 5 and 15 years post-stroke. Descriptive analyses examined home care patterns and unmet needs. A Heckman selection model assessed factors associated with home care use while accounting for missing data. Results On average, 75% of stroke survivors used home care across 15 years post-stroke, with 83% of care at 3 months and 87% at 15 years being provided through informal care. Home care use was more likely among those with functional dependency (29%; 95% CI, 22%–35%) and those living with family (24%; 95% CI, 21%–27%). Social care use was higher in people with greater dependency (48%; 95% CI, 42%–56%), those living alone (25%; 95% CI, 21%–29%), those with lower deprivation (10%; 95% CI, 1%–20%) or those with a Black ethnic background (6%; 95% CI, 2%–9%). Informal care use was higher among those living with family (12%; 95% CI, 9%–14%), those with moderate dependency (2%; 95% CI, 0.1%–5%) or females (6%; 95% CI, 3%–9%). Unmet needs in ADLs increased over time (12% at 3 months to 17% at 15 years) and were higher among those with moderate compared with severe functional dependency. Discussion and Conclusions Within home care, informal care remains the predominant long-term support for stroke survivors, persisting up to 15 years after stroke. Addressing health-related, socio-economic, ethnic and gender disparities in home care and unmet needs is essential for equitable community-based stroke care, and caution is needed when promoting home-based care models regarding the distributional impact of home care. Accurate measurement of home care is key to improving post-stroke care models and quality of life.