Restricted Participation in Stroke Caregivers: Who Is at Risk?

Abstract Objective To identify caregiver-, stroke survivor-, and caregiving situation-related factors that are associated with caregivers' restriction from participation in their normative activities (ie, participation restriction) over the first 2 years poststroke. Design Longitudinal cohort study. Setting Acute care facilities and community. Participants A secondary data analysis of caregiver/survivor dyads (N=399). Interventions Not applicable. Main Outcome Measures Data were collected at 1, 3, 6, 12, 18, and 24 months poststroke. The primary outcome was caregivers' participation restriction and was assessed using the Caregiver Impact Scale. Caregivers also provided demographic information and completed standardized measures to capture assistance provided, mastery, and depression. From stroke survivors we collected demographic characteristics, stroke severity, and cognitive and physical functioning. Data were analyzed using individual growth curve modeling. Results Participation restriction level improved over time. Caregiver factors associated with restricted participation included younger age, being employed, higher depression, and lower mastery level. Stroke survivor factors associated with caregivers' restricted participation included hemorrhagic stroke, more severe stroke, more physical and memory impairments, and lower participation. Significant factors related to the caregiving situation included providing high levels of assistance and caring for a spouse. Conclusions Depressed younger caregivers, with low levels of mastery, who provide high-intensity support to spouses with cognitive difficulties may be at risk. Screening for these factors may help identify stroke families at risk for poor outcomes and may be used to more efficiently allocate health resources.