“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.

Keywords:

• Acquired disability
• paid support
• quality of support
• individualised funding
• qualitative research

Acknowledgements

We would like to acknowledge and thank the participants with acquired neurological disability who generously shared their experiences and perspectives, making this research possible.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

This work was undertaken by the first author while completing a PhD at La Trobe University, supported by a postgraduate award through the Summer Foundation, Melbourne, Australia.