A ‘Network of Understanding and Compassion’: A Qualitative Study of Survivor Perspectives on Unmet Needs After Traumatic Brain Injury (TBI) in Regional Communities

Abstract

Objective: This qualitative study aimed to identify the service and support needs of people with a recent history of traumatic brain injury (TBI) living in the community. Methods: A postal survey was sent to 662 people 6–18 months after hospital admission for a mild-to-severe TBI. The survey included an open-ended item (‘wish-basket’) for collecting ideas about important unmet needs. Results: Responses from 53 individuals were coded and processed using thematic analysis. Five themes (n = 39) were identified, three of which were related to personal needs. These personal wishes were about being symptom-free, independent and emotionally supported by, and connected to, loved ones. The remaining themes were about the wished-for changes to the health system and society, such as wishing for health care continuity (as opposed to being abandoned), and for greater understanding and support by society. Conclusions: There is scope to improve the services and support for people living with TBI in the community. This includes reconsidering the way that discharge occurs, addressing the personal needs that remain when living in the community and promoting greater social awareness of TBI to counteract disadvantage.