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

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).

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.

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.

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.