University of Sussex
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Acquired brain injury: the lived experience of family members

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posted on 2023-06-09, 08:44 authored by Mark Holloway
Family members are themselves affected by the impact of Acquired Brain Injury (ABI) upon their relatives and they play an important role in the rehabilitation and long term support required. The study aims to understand how families are impacted and their views on the formal and informal support received directly or indirectly as a consequence of the ABI. To date there has been very little research undertaken by social workers in relation to ABI and/or the experience of family members. A mixed methods research design was employed to capture the lived experience of family members of people with ABI. The results of the quantitative and qualitative data were triangulated against the literature. An online survey was completed by 110 relatives of people with an ABI, seeking their experience of the condition, its impact upon their lives and their views of services. The results of the survey were collated and organised in SPSS (version 24). Non-parametric Spearman’s Rho Correlations (non-parametric test) were performed upon the results. In-depth, semi-structured interviews were conducted with 16 family members of people with severe ABI to ascertain the family members’ experience of their relatives’ condition, its impact upon them and their views of the associated formal and informal support received. Inductive thematic analysis of the transcribed interview data was undertaken to identify themes. The quantitative element of the research identified strong correlations between the relative’s assessment of the invisible impairments suffered by those with an ABI (cognitive, executive, behavioural and emotional difficulties) and lack of insight. This correlation was not present in relation to physical impairment. It was observed that increased loss of insight and behavioural difficulties were strongly correlated with loss of friendships by the non-injured family member. The results of the inductive thematic analysis identified 7 themes which were: 1: The Context 2: The All-Encompassing Challenge 3: Family Loss and Grief 4: The Unavoidable Burden 5: The Poor Experience of Support 6: Positive Support and Change 7: The Curator of Narrative The research identified that family members’ experience is complex and enduring, encompassing most aspects of life, and is affected by the context in which it occurs as well as by formal and informal support structures. The particular nature of the grief and loss experienced by families is ambiguous, develops over time and leads to ambivalent feelings for family members who perceive no option but to remain involved. Informal and formal support frequently fails to take account of the reality and complexity of the condition and fails to integrate the relative by recognising their own losses and trauma. Relatives’ views on the services received identified significant gaps in practitioner knowledge, most especially of those aspects of life that were of most concern to them, the invisible impairments and issues with insight. Practitioners that were valued were more likely to be specialists in the condition and practiced as “expert companions” supporting the relative to develop a new “neuro-narrative” to reconstruct their identity in the face of their ongoing grief. The specific nature of the condition requires such an approach if input is to be effective. Greater understanding of the complex lived experience of family members may support more effective responses to both them and the individual with ABI, integrating services and families to improve quality-of-life. As ABI is a process with changes to functioning developing over time, the information and knowledge required by loving and supportive relatives needs to be created with them, being person-, family-, injury-and-context-specific.


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  • doctoral

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  • eng


University of Sussex

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