Abstract
Introduction: Acquired brain injury (ABI) profoundly impacts the whole family. Typically, research has studied survivor and family member experiences separately, using individualistic and problem-saturated lenses. Recently, there has been a growth in relational research into family experiences and resilience post-ABI. The aim of this study is to explore narratives of family identity within a relational and strengths-focused framework, to better understand how families construct meaning to navigate ABI together.
Methods: Four adult families participated, including four survivors of ABI and seven family members, aged 24 to 74. Time since the ABI was between one and eighteen years. Two or three interviews, involving the whole family, were conducted via videocall to collect in-depth stories of family identity. Narrative analysis was used as a framework to explore the data.
Findings: An overall narrative (gestalt) was interpreted to be ABI as an ongoing family life transformation, encompassing disconnecting and unifying narratives. Within the overarching narratives, six interconnected, complex and evolving stories of family identity were explored:
1) Disjointedness in response to the trauma of the ABI.
2) Closeness that can remedy disjointedness with continuity and growth.
3) Incomprehension of ABI and stories of disablism in interactions with people.
4) Incomprehension and disablism may be mitigated through understanding, kindness and inclusion.
5) Protectiveness from family members in tension with survivor’s wish for independence.
6) Humour to lighten the seriousness of the ABI.
Conclusions: Each family’s identity, termed ‘we-dentity’, was unique. While disconnecting narratives spoke to the challenges of responding to the trauma of ABI, unifying narratives could bring the family together, aid meaning-making and facilitate managing the challenges of ABI. Unifying and disconnecting narratives may be integrated into coherent understandings to makes sense of the ABI experience. It is recommended clinical services embed relational and strengths-based understandings into family support post-ABI. Future avenues for research are suggested.