Family caregivers' support needs after brain injury: A synthesis of perspectives from caregivers, programs, and researchers

Abstract

There is a dearth of support for family members who assume caregiving responsibilities following acquired brain injury (ABI). This qualitative study broadens the understanding of ABI caregiver support needs through data triangulation from multiple interview sources across different settings. Thirty-nine caregivers across urban and rural settings in Ontario participated in focus groups. Interviews focused on ABI support services received, their utility, access barriers, needed supports, and suggestions for service delivery. Key informant interviews were also held with four US researchers funded through the TBI Model Systems, one Canadian provincial government health official, and representatives from 11 Ontario ABI programs including two brain injury associations. Interviews focused on existing or proposed caregiver programs and gaps in services. A coding framework was developed through content analysis, centring on five themes: coping, supports that worked, supports needed, barriers, and ideal world recommendations. Perspectives from those involved in receiving, providing and researching caregiver interventions following ABI were synthesized to provide a thorough, detailed depiction of the ongoing support needs of caregivers. This convergence of evidence underscores that caregiver support needs transcend geographical boundaries and must be comprehensive, accessible, long-term, and encompass education, emotional, and instrumental support. Recommendations for ABI caregiver support services are offered.