‘The biggest thing is trying to live for two people’: Spousal experiences of supporting decision-making participation for partners with TBI

PRIMARY OBJECTIVE: To understand how the spouses of individuals with severe TBI experience the process of supporting their partners with decision-making. DESIGN: This study adopted a constructivist grounded theory approach, with data consisting of in-depth interviews conducted with spouses over a 12-month period. Data were analysed through an iterative process of open and focused coding, identification of emergent categories and exploration of relationships between categories. PARTICIPANTS: Participants were four spouses of individuals with severe TBI (with moderate-severe disability). Spouses had shared committed relationships (marriage or domestic partnerships) for at least 4 years at initial interview. Three spouses were in relationships that had commenced following injury. MAIN OUTCOME AND RESULTS: Two main themes emerged from the data. The first identified the saliency of the relational space in which decision-making took place. The second revealed the complex nature of decision-making within the spousal relationship. CONCLUSIONS: Spouses experience decision-making as a complex multi-stage process underpinned by a number of relational factors. Increased understanding of this process can guide health professionals in their provision of support for couples in exploring decision-making participation after injury.