Navigating 'brain injury world' from the family perspective

Abstract

Section A.
Introduction: Evidence suggests acquired brain injury (ABI) has a profound systemic impact on not only individuals, but the quality of life (QoL) of family members. This critical review aimed to synthesise qualitative evidence to develop a conceptual understanding of the multidimensional impact of ABI on family members’ QoL. Method: A systematic search of five databases (PsycINFO, Scopus, MEDLINE, CINAHL, ASSIA) was conducted following the PRISMA framework. Fifteen qualitative studies meeting the eligibility criteria were appraised using the Critical Appraisal Skills Programme Qualitative Checklist (CASP, 2018). Data were analysed using a thematic synthesis protocol (Thomas & Harden, 2008). Results: Five overarching themes reflected the profound impact of ABI across the emotional, environmental, social, and physical domains of QoL. The emergent themes included: psychological challenges, isolation and disconnection, the physical impact of caregiving, the experience of loss, and the impact on daily life. The findings indicated that QoL is not only shaped by the survivor’s ongoing challenges, but also by pervasive changes in family members’ relational dynamics, roles, and identities. Conclusion: The findings highlighted the pervasive impact of ABI on the QoL of family members and emphasises the necessity of neurorehabilitation models that integrate family members into supportive interventions.

Section B.
Introduction: Child acquired brain injury (cABI) is associated with profound changes to the family system, impacting relationships, individual well-being, and family functioning. Despite its recognised impact, the family experience of cABI remains underexplored. This study aimed to develop an explanatory theory of the relational, systemic, and adaptive processes through which families respond to cABI. Method: Twenty-five individuals from eight families, including parents, the child with cABI, and siblings participated in semi-structured interviews. Corbin and Strauss’s (2015) grounded theory methodology was employed, with data analysed iteratively using open, axial, and selective coding to achieve theoretical sufficiency. Results: The findings positioned cABI as a pivotal life change, prompting relational and family role reorganisation. The central process of adaptive care navigation captured how families responded to the evolving demands of cABI by seeking support from their relational, health, educational, and social care systems. The grounded theory highlights co-existing processes of relational strain and family strength, as families navigate the evolving challenges of cABI. Conclusion: Following cABI, families undergo a dynamic process of adaptation which is shaped by internal family and wider ecological contexts. These findings underscore the need for adaptable healthcare services that extend beyond the child to support the family system.

Date of Award	2026
Original language	English
Awarding Institution	Canterbury Christ Church University