Experiences of patients with traumatic brain injury and their carers during transition from in-patient rehabilitation to the community: a qualitative study

Purpose: To explore the experiences of individuals who have had a severe traumatic brain injury (TBI) and their carers in the first month post-discharge from in-patient rehabilitation into living in the community.

Method: Using a qualitative approach underpinned by critical realism, we explored the narratives of 10 patients and nine carers using semi-structured interviews approximately one month post-discharge. Thematic analysis was carried out independently by two researchers.

Results: Firstly, perceptions of support were mixed but many patients and carers felt unsupported in the inpatient phase, during transitions between units and when preparing for discharge. Secondly, they struggled to accept a new reality of changed abilities, loss of roles and loss of autonomy. Thirdly, early experiences post-discharge exacerbated fears for the future.

Conclusions: Most patients and carers struggled to identify a cohesive plan that supported their transition to living in the community. Access to services required much persistence on the part of carers and tended to be short-term, and therefore did not meet their long-term needs. We propose the need for a case manager to be involved at an early stage of their rehabilitation and act as a key point for information and access to on-going rehabilitation and other support services.