“Thrown in the deep end”: A qualitative study of community participation during inpatient rehabilitation and transition to community living from the perspective of family members of people with severe brain injury

Purpose: To understand the experience of family members of people with severe ABI as they support their loved one to commence community and social participation during inpatient rehabilitation and transition to the community. Methods: Constructivist grounded theory methodology guided the process of data collection and analysis. Data was collected via in-depth interviews using a semi-structured interview guide. Results: Eight family members were interviewed, inclusive of five parents and three spouses of people living with severe ABI. The participants’ family member with ABI were on average 4 years post discharge from hospital at the time of the interview. Data analysis produced a core category: “An arduous journey” and four categories: Adjusting to change; Overwhelming responsibility; Learning on the job; and Needing people to understand. Conclusion: While family members clearly play an important role in the achievement of community and social participation, the participants of this study identified many factors that impact their experience of supporting positive outcomes. There are important implications for rehabilitation services, such as ensuring families feel welcomed and engaged within rehabilitation, positioning the person with ABI within their family context in rehabilitation and providing opportunities for supported, meaningful and contextual experiences within rehabilitation.