Family members’ needs and experiences related to driving disruption following acquired brain injury

Abstract

Family members often assume the caregiving role after an individual sustains an acquired brain injury (ABI). A mandated period of driving disruption following an ABI means that individuals will often rely heavily on family members for transport and emotional support.However, research on driving disruption has largely focused on the impact, assessment and rehabilitation of the individual with ABI, with little attention given to family members. In order to develop an understanding for approaches to support family members better, this thesis aimed to explore the needs and experiences of family members during driving disruption following an ABI.The first aim of the thesis was to gain a broader understanding of the issue by conducting a scoping review of the literature on family members' needs and experiences during driving disruption across all health conditions. The scoping review found that driving disruption is a stressful and complex issue with communication and emotional implications for family members. The review highlighted differences in experiences according to health condition, permanence of driving disruption and nature of the caregiver occupation, and identified the need for further research on the issue of driving disruption for family members of individuals with ABI.A prospective, mixed methods, longitudinal study, with a phenomenological approach was conducted with family members of individuals with ABI who were experiencing driving disruption. Recruitment was stratified according to time post-ABI to gain a range of perspectives. Data were collected from 15 family members at three time-points: recruitment to study, 3 and 6 months later. Self-report questionnaires measuring family members' quality of life and well-being were administered at the first time-point, and semistructured interviews were conducted at each time-point. All interviews incorporated the use of a map to elicit qualitative and quantitative data about family members' current travel patterns as a result of driving disruption. The data were analysed using different approaches in a series of four studies.The first two studies aimed to gain an in-depth understanding about the experiences of family members of individuals experiencing driving disruption due to ABI across the recovery continuum. Both studies examined the mixed methods cross-sectional data from the first time-point. The first study explored the differences in family members' experiences iii at the early (<1 year post-ABI) and later stages (>1 year post-ABI) using a mixed methods, phenomenological approach. Family members in the later group reported more challenges with greater intensity. These challenges included changes in everyday activities, the impact on their emotions, consequences for the whole family, and effects on physical health. The later group had lower ratings of health and well-being, and higher caregiver strain.The second study investigated the specific changes family members experienced in everyday activities with a focus on the impact of driving disru...