Family quality of life after brain injuries: a qualitative study on the perspectives of family members.

PURPOSE: Exploring the perceptions of family members after an acquired brain injury (ABI) regarding their family quality of life (FQoL) is essential for tailoring interventions aimed at promoting recovery and improving family well-being. The aim of this study was to understand their perspectives on FQoL, identify its components, and differences among different family members of people with ABI according to their role within families.

METHODS

A qualitative study was conducted with ABI survivors and both primary (PCs) and non-primary family caregivers (NPCs) of adults with ABI. A total of 24 survivors, 22 PCs and 14 NPCs from different families were recruited through Spanish Brain Injury Federation. Eight role-specific focus groups on family well-being were conducted. Following verbatim transcription, a thematic analysis (Braun and Clarke, 2006) was performed to identify main domains of FQoL and their indicators. Comparative analyses examined differences among the three groups of participants.

RESULTS

Themes, subthemes and indicators of FQoL for ABI families were identified, encompassing five domains-individual well-being, family relationships, family resources, community relationships and community resources-. Also, differences between family members' roles were reported.

CONCLUSION

These findings highlight the importance of addressing FQoL by acknowledging the different family members' experiences. From a family-centered approach, professionals should align to the goals and needs of different family members to provide appropriate support, aiming at enhancing the overall quality of life for families affected by ABI.