A qualitative needs assessment of persons who have experienced traumatic brain injury and their primary family caregivers.

TLDR: The expressed needs of persons with traumatic brain injury and their primary family caregivers are determined and services must be responsive to changes in needs over time, accessible to consumers of services for as long as they are required, and designed to be directed and customized by users.

Abstract: Objectives To determine the expressed needs of persons with traumatic brain injury (TBI) and their primary family caregivers. Design Semistructured interviews with content-analytic techniques to identify respondents' needs. Participants Eighty persons with TBI, with an average time since their most severe TBI of 5.8 years, and 85 primary support persons. Results Respondents described their needs via phases that paralleled transitions in settings, treatments, and responsibilities (ie, acute care, in-patient rehabilitation, return home, and living in the community). Prominent themes during in-patient phases included provider quality, emotional support, and understanding the injuries. Prominent themes during the latter 2 phases included guidance, life planning, community integration, and behavioral and emotional issues. Conclusions Participants reported insufficient education and preparation for the future. Current methods of identifying needs may not be based on these populations' perceptions, and often miss the natural divisions of needs that occur over the course of treatment and rehabilitation. To meet their needs, services must be responsive to changes in needs over time, accessible to consumers of services for as long as they are required, and designed to be directed and customized by users.