Care-related quality of life of informal caregivers of stroke survivors: cross-sectional analysis of a randomized clinical trial

Abstract

Purpose: We aimed to describe the intensity of care and its consequences on informal caregivers of stroke survivors according to the degree of care receivers' functional dependence for activities of daily living; and to identify the factors associated with caregivers' care-related quality of life. Methods: Cross-sectional analysis of prospective data collected in a cost-utility study alongside the RACECAT trial in Catalonia (Spain). One-hundred and thirty-two care receiver-caregiver pairs were interviewed six months after stroke. Functional dependence for activities of daily living was measured with the Barthel index. We assessed caregivers care-related quality of life with the CarerQoL, which measures seven dimensions of subjective burden (CarerQoL-7D) and a happiness score (CarerQoL-VAS). We evaluated the association between characteristics of informal caregivers, characteristics of care receivers, and intensity of care, and the caregiver's care-related quality of life (subjective burden and happiness) in a hypothesized model using a structural equation model. Results: Of the 132 caregivers, 74,2% were women with an average age of 59.4 ± 12.5 years. The 56.8% of them were spouses. The care intensity ranged from a mean of 24h/week for mild to 40h/week for severe dependence. Most caregivers (76.3%) were satisfied with their task, regardless of dependence, but showed increasing problems in caring for severely dependent persons. Being a woman (coeff. -0.23; 95%CI: -0.40, -0.07), spending more time in care tasks (coeff -0.37; -0.53, -0.21) and care receiver need of constant supervision (coeff 0.31; -0.47, -0.14) were associated with higher burden of care, irrespective of the degree of dependence. Caregiver burden (coeff 0.46; 0.30-0.61) and care receiver anxiety or depression (coeff -0.19; -0.34, -0.03) were associated with lower caregiver happiness. Conclusions: The findings suggest the importance of developing mainly two types of support interventions for caregivers: respite and psychosocial support. Especially for women with high caring burden and/or caring for persons with high levels of anxiety or depression.