Family members facilitating community re-integration and return to productivity following traumatic brain injury – motivations, roles and challenges

Abstract

Purpose: This study explores the experiences of family members in supporting community re-integration and return to productive occupations of the traumatic brain injury (TBI) survivor in order to: (i) describe family members’ supportive roles, (ii) determine challenges family members experience in supporting the TBI survivor; and (iii) identify supports that family members require to maintain and enhance their roles. Methods: This qualitative descriptive study involved 14 interviews with immediate family members of TBI survivors. Data was analyzed using thematic analysis. Results: Family members expressed strong motivation and engaged in six key roles to support TBI survivors: researcher, case manager, advocate, coach, activities of daily living (ADL)/instrumental ADLs and emotional supporter. Personal and family stressors and challenges navigating the health care system were perceived as challenges in meeting demands of their supportive roles. Stigma also presented a barrier to successful community and vocational re-integration. Subsequently, family members desired more education related to the functional implications of TBI, to be connected to health care and community resources, and sought a greater family-centred care approach. Conclusions: Family members require on-going counseling and community supports to prevent burnout and allow for their continued engagement in their supportive roles. Further education on how to navigate the health care system, access community programs and rights to workplace accommodation is also warranted.Implications for RehabilitationFamily members are strongly motivated to support survivors’ return to productive occupation following a traumatic brain injury, but require counseling and community support to enable their on-going engagement and prevent burnout.Family members can be further empowered through the implementation of family-centred care.Family members requested further education on the long-term functional implications of TBI, how to navigate the health care system, how to access community programs and workers’ rights to workplace accommodations.