Survivors of brain injury and their family members' experiences of loss : an interpretative phenomenological analysis

Objective: This study aimed to explore families' experiences of loss following acquired brain injury (ABI). The study also aimed to contribute to our understanding of grieving processes in the context of ABI and of the factors that promote coping and adjustment. Design and Methodology: The study utilised an interpretative phenomenological approach to explore the lived experiences of families affected by brain injury. Eleven family members and survivors of ABI from four family units took part in two or three semi-structured interviews. Data was analysed using a step-by-step interpretative phenomenological analysis (IPA) procedure developed specifically for group data. Results: Several themes emerged from the analysis which were clustered into three group experiential statements: "grief and loss through a relational lens"; "the family as a 'jigsaw puzzle'" and "new insights and opportunities". Conclusions: Due to the joint nature of the interviews, there was an opportunity to view loss through a systemic, relational lens, which is a unique contribution of this study. Losses were frequently experienced as shared between both survivors and family members. A lack of social recognition of the losses that families experience following brain injury was identified. Families reflected on what had contributed to adjustment following brain injury, including how the individual strengths of family members contribute to a cohesive and unified family system.