Parent carers of adults with brain injury: a thesis portfolio

Abstract

Consequences of acquired brain injury (ABI) can be life long and complex. The majority of those who sustain an ABI are cared for by family members. Many are young adults who are cared for by parents. A systematic review highlighted that there is little in the way of research that focused on the experience of parent caregivers, particularly in the traumatic brain injury (TBI) population and in the early days of caregiving post discharge from hospital. Method A qualitative design using Interpretative Phenomenological Analysis (IPA) was used. Six participants were recruited; three from the NHS and three from Headway. Results Four superordinate themes emerged: carrying on with the parenting role; barriers to caregiving; factors that engender mastery; and the psychological, physical and social impact on parents. Conclusion The early weeks at home following discharge from hospital are exciting but exhausting and parents were ill-prepared to meet some of the challenges. Parents wanted more TBI specific services for their family members and themselves. Some experienced difficult emotions during the first few weeks at home and so there is a need for regular, on-going input that starts before discharge from hospital. This has relevance for professionals as parents should be involved in the care and decision making from the acute stage onwards as they will be the people assuming responsibility on discharge from hospital. They should be assessed early on to see what psychological or practical support must be in place before their family member leaves hospital.