RESUMO
Although caregiving for stroke survivors is usually long-term, most studies on caregivers have generally involved only the first year following the event. We assessed and compared the long-term level of well-being measures among stroke survivors and their caregivers at more than 1 year following the stroke event and examined the associations between well-being, survivors' characteristics, and caregiver burden. We interviewed a convenience sample of 51 community-dwelling stroke survivors, at least 1 year after the last stroke event, and their primary caregivers. Disability of survivors was assessed using the Barthel index and the modified Rankin Scale; health-related quality of life by the SF-36 questionnaire; and depression and anxiety using the Hospital Anxiety Depression Scale. Caregivers filled the SF-36 questionnaire, Hospital Anxiety Depression Scale questionnaire, and the Zarit Burden Interview, which assesses caregiver burden. Caregivers reported low levels of health-related quality of life and high levels of burden, anxiety, and depression. Caregivers' anxiety level was higher than that of the survivors (7.7±5.1 vs. 5.8±4.5, respectively; P=0.02). Anxiety was the only characteristic of caregivers that was associated with overall caregiver burden. Our study suggests that there is a spillover effect of the disease on stroke patients' primary caregivers. Intervention programs for caregivers should focus on their mental state and address their specific needs.
