Factors that influence the quality of paid support for adults with acquired neurological disability: scoping review and thematic synthesis

Abstract

Purpose

Theoretically, individualised funding schemes empower people with disability (PWD) to choose high quality support services in line with their needs and preferences. Given the importance of support, the aim of this scoping review was to understand the factors that influence the quality of paid disability support for adults with acquired neurological disability.

Methods

A comprehensive scoping review of the published literature from 2009–2019 was conducted on five databases: Medline, CINAHL, Embase, PsycINFO and Scopus.

Results

Of the 3391 records retrieved, 16 qualitative articles were eligible for review. Thematic synthesis of the findings revealed six key interrelated themes: (1) choice and control, (2) individualised support, (3) disability support worker (DSW) qualities, (4) DSW competence, (5) PWD – DSW relationship, and (6) accessing consistent support. The themes depict factors influencing the quality of paid disability support from the perspective of PWD, close others and DSWs.

Conclusions

Although the evidence base is sparse, the factors identified were in line with international rights legislation and policy ideals. The findings can provide insights to PWD hiring and managing support, and facilitate the delivery of quality disability support. Further research is required to understand the interactions between the factors and how to optimise support in practice.

Implications for rehabilitation

• The quality of paid disability support is determined by a multitude of interrelated factors influenced by the disability support worker’s qualities and competencies, the interaction between the person with disability and the disability support worker, as well as external contextual factors.

• Optimising choice and control for adults with acquired neurological disability and providing individualised support should be a significant focus for disability support workers.

• Training modules for disability support workers can be informed by five of the identified themes: (1) choice and control, (2) individualised support, (3) DSW qualities, (4) DSW competence and (5) the relationship between PWD and DSWs.

Keywords:

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

Correction Statement

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

Acknowledgements

We wish to acknowledge Mr Jonathan Bredin, our expert consultant with lived experience of disability, who provided valuable insights interpreting the results of the review. We also gratefully acknowledge Dr Sue Gilbert, Senior Research Advisor at La Trobe University, for her assistance with the search strategy and review protocol.

Disclosure statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.