“They treat you like a person, they ask you what you want”: a grounded theory study of quality paid disability support for adults with acquired neurological disability

Abstract

Purpose Adults with acquired neurological disability often require paid disability support to live an ordinary life. However, little is known about what facilitates quality support. This study aims to explore the lived experience of people with acquired neurological disability to develop an understanding of the factors that influence the quality of support. Methods Guided by constructivist grounded theory, in-depth qualitative interviews were conducted with 12 adults with acquired neurological disability. Data analysis followed an iterative process to develop themes and subthemes and explore relations between themes to build a model of quality support. Results Nine key factors emerged in the dyadic space, with the support worker recognising the person as an individual as foundational to quality support. Beyond the dyadic space, three broader contextual factors were identified as influential on the quality of support by mechanism of facilitating or constraining the person with disability’s choice. Finally, the provision of quality support was characterised by the person feeling in control. Conclusions Findings support the rights of people with disability to quality, individualised support, and a need for interventions to better prepare the disability workforce to deliver support in line with the needs and preferences of people with acquired neurological disability. IMPLICATIONS FOR REHABILITATION To provide quality support, disability support workers need to recognise the person with disability as an individual and the expert in their support needs and preferences. The quality of paid disability support is primarily determined by the way the person with disability and support worker work together in the dyadic space. Ensuring people with acquired neurological disability have authentic choice over their support arrangements and daily living is critical to facilitate quality support, and in turn help the person with disability to feel in control.