Formal and informal care after stroke: A longitudinal analysis of survivors’ post rehabilitation hospital discharge

Aims: To describe the type and the amount of formal and informal care received during the first year after home discharge and to identify the baseline predictors of the formal and informal care needs of stroke survivors. Design: Longitudinal study. Data were collected between June 2013-May 2016. Methods: Survivors (N = 415) were enrolled during discharge from rehabilitation hospitals and interviewed at 3 (T1), 6 (T2), 9 (T3), and 12 (T4) months. The linear mixed effects model with random intercept and random slopes was used to trend for the amount of formal and informal care received by survivors during the four observation times. Results: Regarding formal care, only physiotherapy and speech therapy decreased significantly over time. Stroke survivors received a mean of 17 hr of paid informal care per week at T1 and these hours did not significantly decrease after one year from discharge, while unpaid informal care decreased significantly over time. Higher numbers of paid informal caregiving were predicted by older age, higher education levels, lower physical functioning, and living without unpaid informal caregivers while higher numbers of unpaid informal care were predicted by lower physical functioning and living with unpaid informal caregivers. Conclusions: Stroke has a great effect on survivors' lives. During the first few months after rehabilitation hospital discharge, survivors need further care because they are often discharged before achieving independent functioning. Impact: The results of this study could be important to guide future interventions aimed at imporving stroke survivors' conditions after post rehabilitation hospital discharge.