Carers' perspective on respite for persons with acquired brain injury

Abstract

Persons with acquired brain injury require continuing care and support in various aspects of their lives. Although the care and support are predominantly provided by family members, little is known about the respite that these carers require to continue the care on a daily basis. This study aims to address the lack of data on respite care and people with acquired brain injury from the perspective of carers. Survey methodology was used to gather information from carers who were members of a peak brain injury association in New South Wales, Australia. The responses of 85 carers were analysed using logistic regression and frequency counts. The characteristics of carers were consistent with the research literature on respite and acquired brain injury, with carers being mainly female and there being a reliance on an informal network to assist in the care. Carers also reported that caring prevented them from obtaining gainful employment. Several factors were significantly associated with the use of respite, these were carers' single marital status; and the person with acquired brain injury's severity of disability, high level of dependency and number of days spent in coma. Carers also reported other factors that might influence them to use respite and they identified their expectations of respite. This study highlights carers' perspective on respite that is an under-researched area in acquired brain injury and reiterates ongoing need for respite.