Long-term support for stroke patients living at home is often delivered by family caregivers (FC). We assessed demographic and clinical characteristics of stroke patients cared by FC, positive and negative experiences of FC and determinants of caregiving experiences by FC at 3-months (3M) after stroke.
Data were collected within TRANSIT-Stroke, a regional telemedical stroke-network comprising 12 hospitals. Patients with stroke/TIA providing informed consent were followed up 3M after the index event. Patients receiving care were asked to pass on the Caregiver Reaction Assessment (CRA) and a self-rated burden-scale (SRB) in addition. Multivariable logistic and linear regression analyses were performed to identify determinants to receive FC and characteristics associated with CRA-subscales and SRB.
Between 01/2016 and 06/2019, 3,654 patients provided baseline and 3M-follow-up-data and 1,044 FC completed the standardized CRA-questionnaire. Half of all FC were older than 55 years, 70% were women and 68% were spouses. Old age, lower Barthel Index at hospital discharge and diabetes were associated with a higher probability to receive care by a FC at 3M (p<.0001). Caring was important for most FC (81.4%) and 69.6% felt privileged to care for their relative. 18% of FC reported financial shortcomings associated with caregiving. Old age of stroke patients resulted in lower caregiver burden, whereas higher caregiver age led to less burden determined by SRB. FC-women had a poorer outcome regarding their health (CRA-health-subscale; p=0.0163).
Most caregivers want to care for their relative after stroke, but are at risk of burden and health disadvantages at the same time.
DRKS No. 11696