Respite care after acquired brain injury: the well-being of caregivers and patients

OBJECTIVE: To investigate satisfaction with respite care, the well-being of informal caregivers and patients with acquired brain injury (ABI) who receive respite care by day-care activity centers, and factors related to caregiver well-being. DESIGN: Cross-sectional cohort study. SETTING: Adult day-care activity centers. PARTICIPANTS: A sample of caregivers and patients (N=108) with ABI (mean of 8y since injury) enrolled in 1 of 7 day-care activity centers. The sample consisted predominantly (70%) of stroke patients. INTERVENTION: Respite care by adult day-care activity centers. MAIN OUTCOME MEASURES: Well-being was defined in terms of life satisfaction (Life Satisfaction Questionnaire [LiSat-9]), emotional functioning (Hospital Anxiety and Depression Scale [HADS]), and caregiver burden (Caregiver Strain Index [CSI]). Factors related to well-being were personal, injury related, and psychological. RESULTS: Satisfaction with day-care activity center care was high for caregivers (7.8) and patients (8.1). Caregiver satisfaction with care was unrelated to caregiver well-being. Most caregivers (61%) showed low life satisfaction and high subjective burden (69%), and 33% of caregivers and 42% of the patients reported depressive symptoms. Caregiver well-being was positively correlated with a high sense of mastery of caregivers and patients and low passive coping of the patient (LiSat-9 R(2)=.32; HADS R(2)=.55; CSI R(2)=.35). CONCLUSIONS: This study emphasizes the need for care for both caregivers and patients in the chronic phase after ABI. Although respite care is highly appreciated, it is not sufficient for caregivers to attain a healthy level of well-being. Results indicate that caregiver well-being might improve by targeting passive coping and mastery skills of caregivers and patients. Continuous support for both caregivers and patients is needed