AbstractObjectives: To investigate care needs, functional outcome, role participation and community integration approximately nine years following severe brain injury. To gain an understanding of the ongoing cost of care and support needs for this group. Participants: 13 individuals who had sustained an extremely severe traumatic brain injury (TBI), between 8 and 9 years previously participated in the study. These individuals were the remaining participants of a larger sample of consecutive admissions between 1996 and 1998 at Ivanhoe Manor Rehabilitation Hospital. Measures: Structured Interview, Functional Independence Measure, Community Integration Questionnaire, Care and Needs Scale and Role Checklist. Results: The majority of the participants were reported to have high support needs, with 6 participants (46%) requiring 24-hour support. Four participants were reported to able to be left alone for between a few hours per day to almost all week. Three participants reported that they were completely independent. The participant's characteristics are described in terms of functional independence, community integration and role participation. Overall care needs appear to have remained relatively stable between 2 and 9 years postinjury. However, there was a shift in the proportion of paid and gratuitous care over time, with a decrease in paid care and increased gratuitous care noted from the 2-year to long-term follow-up time points. Conclusions: Severe TBI has a long term influence on life roles, care needs and functional independence. The current study suggests that high care needs do not necessarily preclude participants from leading active lives and participating in valued life roles. The importance of social support in facilitating participation in activity and the potential issues for caregiver burden, given the increase in gratuitous care over time, should be acknowledged and further research in this area is recommended.
