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

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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.

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