Caring for adults with learning disabilities: Parents' experiences and the role of respite care

This study had two main aims, to explore parents' experiences of caring for their adult offspring with learning disabilities and the factors contributing to their experience, as well as to explore the role of respite care in the parental caring experience. Parents using three different respite care services were approached, with the researcher visiting 62 parents of adults with learning disabilities in their homes. Structured interviews encompassing mainly quantitative measures, were carried out with the participants. Overall, participants in this study were not functioning as well as other caregivers and the general population. There was variation in parents' caregiving experiences with the majority reporting some stresses in their caregiving role, and a minority reporting no stress. There was also variation in parents' experiences over time, with some parents finding their caregiving role harder over time and others reporting that it was easier. Various factors were found to be associated with the positive and negative outcomes of parental well being. Overall parents were satisfied with respite care services, although there was no association between respite care use and parental well being. Parents did however feel that respite care was beneficial, predominantly in enabling them to have a break from the caregiving role. Finally, the salience that parents place on their post parental life style, whether they were captive or captivated parents, was significantly associated with some aspects of parental well being. The findings are discussed in the light of general psychological frameworks, and the implications are considered for participants, researchers, clinicians and other professionals