What do people with acquired brain injury think about respite care and other support services?

Abstract

Little is known about the need for continuing support services, such as respite for persons with acquired brain injury (ABI). This study focuses on the views of people with ABI on respite and support services. In particular, the study aims to identify the characteristics of persons with ABI who were using or not using respite, to explore the factors influencing respite use and to determine expectations of respite and need for other support services. Survey methodology was used to gather information from members of a peak brain injury association in New South Wales, Australia. The characteristics of participants with ABI appeared consistent with the current literature in the area. Several characteristics were found to be significantly related to respite use, these were level of severity of disability, overall dependency of person with injury and number of days in coma. The factors that influenced respite use appeared to be similar to those reported in the developmental disability literature and in a study of respite from the views of carers of people with ABI. Some of these factors included the stress level of the carer and severity of disability. Other factors existed that influenced use of other support services. Persons with ABI indicated reported several expectations of respite, for example, they preferred a wider range and more flexible respite options, and more trained and qualified staff. They also reported lack of sufficient respite. Respite service planning and allocation need to consider the views of people with ABI and to respond to the inequities in respite service delivery.