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

Study Aim/Purpose: The study sought to investigate caregiver and patient satisfaction with respite provided by adult daycare centers in the Netherlands, and patient and caregiver factors related to caregiver well-being. 

Summary of Methods: This cross-sectional study conducted a one-time survey with a sample of 108 caregiver and patient dyads who had been enrolled in a daycare activity center for a mean of 4.8 years. The sample consisted primarily (70%) of stroke patients. Key outcomes measured were: satisfaction with the daycare activity center (using measures developed by the authors), life satisfaction (measured by the Life Satisfaction Questionnaire), emotional functioning of the caregivers and patients (measured by the Dutch Hospital Anxiety and Depression Scale), and caregiver self-report of burden (measured by the Caregiver Strain Index). In addition to demographic characteristics, characteristics of the day care center and of the patient’s ABI, they also measured the extent of caregiver and patient passive coping mechanisms, which the authors state are indicative of not taking any action when problems occur (measured by the Utrecht Coping List Passive reactions scale), and caregivers’ and patients’ sense of mastery over their own life (measured with the Mastery Scale). 

Summary of Results: Satisfaction with the day-care center care was high for caregivers and patients. Caregiver satisfaction with care was found to be unrelated to measures of life satisfaction or emotional functioning for either caregivers or patients: 61% of caregivers reporting low life satisfaction and high subjective burden, 40% of caregivers experiencing anxiety symptoms, and 33% of caregivers and 42% of patients reporting depressive symptoms. Caregiver well-being was positively associated with a high sense of mastery over one’s life among caregivers and patients and low measures of passive coping among the patients, but not with the patient’s ABI or the day-care activity center characteristics. When examining associations between ABI characteristics and outcomes, only level of caregiver burden was predicted by the severity of physical disabilities of the patient. 

Study Limitations (as cited by authors): The authors note study limitations that should be considered when generalizing results to broader groups of patients with ABI, including: the cross-sectional study design, the lack of information on patient or caregiver use of other services, and the purposive exclusion of aphasia patients from the study sample. In addition, they note that the caregiver and patient received the questionnaires in the same envelope which may have influenced their responses. 

Authors’ Discussion/Conclusions: The authors conclude that “the results of this study suggest that for better caregiver functioning, interventions should target mastery and coping skills of both caregivers and patients.” “In the current study, patients were already in the chronic phase of their injury, and a more constructive approach in this group should stress self-management of the consequences of brain injury and continuous support for both caregivers and patients” with ABI after the acute phase and discharge from the hospital or rehabilitation center. With regard to future research, the authors recommend research to “provide knowledge about the contribution of each component and type of (respite) care to the well-being of caregivers and patients.”