This doctoral thesis documents a qualitative exploration of some of the wider contextual issues relating to disability following traumatic brain injury (TBI).
There is a relatively high prevalence of long term disability following TBI. Family members often provide informal care and can experience negative psychological outcomes as a result. The systematic literature review in section one presents a metasynthesis of 15 qualitative papers exploring the experience of caregiving following TBI. Negative emotional reactions were experienced, due to changes to their injured relative and to their own lives. Caregivers were more able to cope if they could develop a good understanding of the person with TBI. Importantly, this review noted that families experienced a sense of wider supports crumbling beneath them following discharge form hospital. Lack of material, social, and professional supports intensified experiences of distress, as caregivers had fewer options. The findings support the need to address wider issues alongside any individual intervention.
Many people with TBI need to claim state financial benefits due to disability. The Work Capability Assessment (WCA) was introduced in the UK to assess ability to work and decide upon benefits received. The WCA process has been associated with increased mental health difficulties and has been criticised for neglecting contextual factors. The assessment may not be suited to the complexity of impairment following TBI. The research paper in section two explores the experiences of nine adults with TBI regarding the WCA. The data was analysed using critical narrative analysis. Participants experienced the assessment as distressing and saw the WCA as neglecting important functional difficulties. They experienced multiple barriers to the process. There is a need for the WCA to adopt a biopsychosocial approach to assessment of disability, and to make reasonable adjustments for people with TBI.