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

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.

Automated summary

This study aimed to explore the lived experience of people with acquired neurological disability to understand the factors that influence the quality of support. In the dyadic space, the support worker recognizing the person as an individual was found to be foundational to quality support. Beyond the dyadic space, three broader contextual factors were identified as influential on the quality of support by facilitating or constraining the person's choice. Lastly, the provision of quality support was characterized by the person feeling in control.