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 membersr 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 membersr quality of life and well-being were administered at the first time-point, and semi-structured interviews were conducted at each time-point. All interviews incorporated the use of a map to elicit qualitative and quantitative data about family membersr 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 membersr experiences at the early (l1 year post-ABI) and later stages (g1 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 disruption on lifespace (the geographic area in which people travel and participate in activities). Quantitative analysis revealed lifespace increased for nine family members, decreased for five, and remained unchanged for one. Subjective meanings of lifespace changes were captured in four typologies using a narrative approach. The most common narrative of lI will do everything for him or herr showed that family members were willing to give up their personal lifespace to accommodate for driving-related caregiving activities. The final two studies aimed to understand family membersr needs and experiences over a 6-month period, and used thematic analysis to examine the qualitative data across all three time-points. The third study captured the changes over time as four phases: (1) Wait and see, (2) Holding onto a quick fix, (3) No way out, and (4) Resolution and adjustment. The duration of driving disruption was perceived as indefinite by some family members who even after 10 years saw lno way outr. These findings suggest that supports are needed in the second phase to facilitate the resolution of issues without the escalation of problems in the third phase. The theme of the caregiver occupation emerged inductively while examining family membersr experiences over the 6-month study period. Consequently, the fourth study investigated the occupational experience of family members during driving disruption. Analysis of the activities and their meaning revealed that family members provided more than just transport. They managed broader responsibilities beyond the travel itself, performed driving-related caregiving activities that they perceived as unseen or undervalued, and took on roles similar to a therapist. The thesis concludes that driving is an important domain of caregiving with complex and unique challenges for family members of individuals with ABI. Although driving disruption may be perceived as a less important issue earlier on post-ABI, the longstanding consequences for family members are substantial. Specific supports are necessary for family members throughout the different phases of driving disruption. Regular follow-up in the long-term may be necessary due to the enduring nature of this issue. Occupational therapists can play a crucial role in supporting family members in the caregiver occupation during driving disruption.