Stroke Caregiver Needs in a Population-Based Study

Most individuals who have experienced a stroke require comprehensive rehabilitation beyond initial medical care, with informal, unpaid caregivers playing a crucial role in aiding recovery and daily activities. Caregivers face significant burdens due to unmet care needs of their care recipients. This study examines the community needs of individuals who have experienced a stroke and their caregivers, while also exploring their awareness and use of existing services in Nueces County, Texas.

The study used concept mapping and interviews. Concept mapping, a mixed-method approach, collected qualitative input on perceived needs by a subsample of caregivers from the parent study. Participants then sorted and rated perceived needs. Using this information, multidimensional scaling and cluster analyses mapped relationships between perceived needs and determined their importance and priority. Interviews were completed with all caregivers in the parent study. Responses were analyzed for ethnic differences when possible.

The following 5 clusters were derived from the concept mapping (N=16), listed in order of highest ratings of importance: medical care needs, financial and legal resource needs, caregiver support needs, daily care needs, and housing and transportation needs. Interview findings (N=228) showed that both Mexican American (n=168) and non-Hispanic White (n=60) caregivers had low awareness and use rates for services like caregiver support and senior centers, with significant ethnic disparities in stroke information awareness that disappeared upon adjustment.

By understanding the needs of caregivers and individuals affected by stroke, we can better support caregivers in managing the condition and help them thrive in this role.