Developing and evaluating an instrument to measure family quality of life among caregivers of adults with traumatic brain injury

Background: TBI is the leading cause of death and disability among young adults and children globally. Those with moderate-severe TBI often experience a lifelong disability. Family members often accept the primary caregiving role. The purpose of this mixed methods study was to develop and evaluate a new instrument to measure Family Quality of Life among caregivers of adults with moderate-severe traumatic brain injury in the Southeast. Methods and Results: First, literature about family-level outcome measures for families with a member with TBI were critically examined. Results led to the development of a draft instrument that was grounded on the Family Systems Theory, Bioecological Theory of Human Development, and principles of Family Quality of Life. Second, quantitative and qualitative data were collected from 16 TBI content experts about the draft instrument. Data guided development of a content valid instrument. Third, the instrument was qualitatively pre-tested by conducting cognitive interviews with eight purposefully selected caregivers of adults with TBI. Finally, the instrument was quantitatively pilot-tested with 95 caregivers of adults with TBI to estimate the construct validity and internal consistency reliability. Instruments were distributed to caregivers by the Alabama Head Injury Foundation, UAB TBI Model System Center, and Alabama Department of Rehabilitation Services TBI Program. Conclusions: This mixed methods study developed a new instrument to measure Family Quality of Life among caregivers of adults with TBI. It also integrated disability concepts and promoted holistic views of health among the head injury research community.