Experiences of challenges and support among family members of people with acquired brain injury: a qualitative study in the UK

Abstract

ABSTRACTPrimary objective: Family members (FM) are affected by the impact of an Acquired Brain Injury (ABI) upon their relatives and play an important role in rehabilitation and long-term support. This study explores how families are affected and integrates their views on the formal/informal support received as a consequence of ABI.Research design: A qualitative research design was employed to capture the lived experience of FM of people with ABI.Method: Semi-structured interviews were conducted with 16 FM of people with severe ABI. Participants were chosen from respondents to a UK national online survey of affected individuals. Interview data were analysed using inductive thematic analysis.Results: Family members’ experiences are complex, enduring and are affected by the context in which the ABI occurs as well as by formal/informal support. The grief experienced by FM is ambiguous, develops over time and FM perceive little option but to remain involved. Experience of formal and informal support is noted to vary significantly in availability and quality, poor support exacerbates difficulties and isolates family members.Conclusion: Greater understanding of the lived experience of FM is needed to support more effective responses to both them and the individual with ABI, integrating services and families to improve quality-of-life.