Respite care as a community care service: Factors associated with the effects on family carers of adults with intellectual disability in Taiwan

Study Aim/Purpose: The study aims to describe the use of publicly funded respite care in Taiwan and caregivers’ satisfaction with those services. The study’s purpose was also to measure the effects of respite use on caregivers’ burden and factors that may contribute to positive effects of respite. 

Summary of Methods: 116 primary family caregivers who lived with an adult (age 15 +) with an intellectual disability (ID) and recently used the Taiwan respite care program completed interviews in their home. The interviews collected household demographics and information on why and how families used respite care, their access to information and resources, and information on caregivers’ level of burden prior to and after respite use. 

Summary of Key Results: Prior to using respite care, the majority of caregivers reported one or more of the following difficulties: having no one to help with caregiving, not having an opportunity for a break, sleeplessness, constant care-giving, inability to go out, having no time of one’s own, feeling depressed, feeling anxiety, neglecting the care of other family members, and pressure on family relationships. “Furthermore, 77.6% of caregivers reported that they were not satisfied with their life.” After using respite care, “a clear majority of the participants responded that their life was ‘somewhat better’ or ‘very much better’ within each of the seven domains”– with the most common improvements in the areas of social support, psychological stress, life satisfaction, and overall burden. Using regression analysis, the authors report that satisfaction with care and the co-payment arrangements were statistically associated with improvements in caregiver social functioning. Further, respite users who reported having a religious belief and lived in a metropolitan city were more likely to have their overall burden of care relieved by respite, improved family interaction, and better access to information and resources than users who had no religious belief and lived in non-metropolitan areas. 

Study Limitations: One key study design limitation noted by the authors was that caregivers were interviewed only once to collect the pre and post respite information, with the reported level of burden prior to respite use based on their ability to recall that information. 

Authors’ Discussion/Conclusions: “It is perhaps surprising that religion emerged as a significant factor associated with effectiveness of respite use. Whether the non-religious caregivers were also more likely to be isolated from social networks, and more disadvantaged with respect to family interaction and assistance with the burden of care, needs to be clarified by future studies.” They authors suggest that their study be viewed as preliminary results and hope that it “serves as a stepping stone for further research on a much-needed service.”