Linked lives: the experiences of family caregivers during the transition from hospital to home following traumatic brain injury

Abstract

The transition from hospital to home following traumatic brain injury (TBI) has been identified as the point where responsibility for care shifts from rehabilitation services to informal family caregivers. There has, however, been little research examining the experiences of family members during this important transition that involves adopting or, in some cases, resuming a caring role (e.g., a parent caring for an adult child). The aim of this qualitative investigation was to understand the experiences of family caregivers during the transition from hospital to home, defined as the first six months postdischarge. The sample included 10 family caregivers, of which all were female and either a mother, spouse or ex-partner of an individual with TBI. Semistructured interviews were conducted on average nine months following community reentry and data were analysed thematically using a framework approach. The overarching theme was that caregivers wished to move past the injury. This desire to move forward stemmed from a realisation of how their life had changed and the weight of the care responsibility. Caregivers were also aware of how the life of the individual with a TBI had changed and hoped for a return to normality (by regaining independence, engaging in meaningful occupation and having meaningful relationships). Implications of the findings for research and clinical practice are discussed. There is a need for services to support family caregivers during the transition from hospital to home.