No map, no guide. Family caregivers' perspectives on their journeys through the system

Most program planning and research on case management and service integration has been framed within the perspectives of professionals, program providers or system managers. This qualitative study focused on the perspectives of family caregivers of survivors of traumatic brain injury, a client group that typically has complex and long-term needs, placing them "at risk" for discontinuity in care planning and integration. Four main themes were identified: the search for information, trust, and understanding; the search for support; the need to speak on behalf of the survivor; and navigating the system. Although faced with overwhelming obstacles and irreversible changes in their own lives, the caregivers in this study did not seek to relinquish their role as primary caregiver. However, it was apparent that these individuals urgently needed support to enable them to continue to bear the physical, social, and financial costs of their caregiving responsibilities. By focusing on the caregiver/client perspective, this study addresses a gap in the research literature. If replicated with other groups who are "at risk" for discontinuity of care, this research approach can be used to identify areas in which professional roles, programs and funding arrangements could be redesigned to more fully acknowledge and respond to the perspectives and needs of family caregivers.