“You’re supporting the whole person”: A grounded theory study of quality support according to close others of people with neurological disability

Purpose: Close others of people with acquired neurological disability often play a key role in supporting their relative to get necessary support, and therefore have valuable insight into what facilitates quality support. Situated within a series of studies aiming to build a holistic model of quality support grounded in the lived experience of adults with acquired neurological disability, support workers and close others, this study explores the perspective of close others. Method: Following grounded theory methodology, ten close others participated. In-depth interview data was analyzed using constructivist grounded theory methods to develop themes and explore relationships between the themes. Results: A multi-level system model characterizing quality support at three levels was developed. Key factors at the dyadic level included the support worker recognizing the person as an individual and the dyad working well together. At the team level, it was important for the support team, close others, and providers to engage constructively together. At the sector level, building quality systems to develop the workforce emerged as essential. Conclusions: The findings complement the perspective of people with disability and support the key notion of quality support honouring the person’s autonomy and highlight the need to raise accountability in the disability sector.