Perceptions of long-term community-based support following severe acquired brain injury

Abstract

Many individuals require long-term community-based support following acquired brain injury (ABI). However, very few studies have examined individuals' perceptions of these support needs. The present exploratory study examined individuals' perceptions of community-based support following severe ABI. Participants included eight individuals (aged 20-48 years) with severe ABI, seven relatives and three case managers. The individuals were receiving long-term specialised lifestyle support ranging from 3-70 hours per week. A structured interview with open and closed questions was developed to explore perceptions of individuals' support needs across the areas of personal and home-based activities, community-based activities, self-organisation and vocational activities and social and psychological well-being. The questions investigated whether support was needed, the importance of support, the sources of support, the effectiveness of support and the need for change. A comparison of the three respondent groups' perceptions of support indicated a general consensus that community-based activities were the most important and most effective area of support. When the issues raised by the three respondent groups were compared and contrasted two main themes emerged from the data, which were labelled "relationships" and "individual choice versus support needs". These themes are discussed in relation to the provision of long-term community-based support services following ABI.