Identifying priorities for Australian disability research using Q methodology.

Consumers Disability Lived experience Priorities Q methodology Research

Journal

Disability and health journal
ISSN: 1876-7583
Titre abrégé: Disabil Health J
Pays: United States
ID NLM: 101306633

Informations de publication

Date de publication:
23 Apr 2024
Historique:
received: 05 11 2023
revised: 18 04 2024
accepted: 20 04 2024
medline: 27 4 2024
pubmed: 27 4 2024
entrez: 26 4 2024
Statut: aheadofprint

Résumé

Globally, there are over an estimated one billion people with disability. Research priorities with a focus on diagnosis and treatment of conditions or policy and service initiatives, traditionally decided by researchers, may not align with priorities of those with lived experience of disability. To explore and inform disability research for Australia, including perspectives of people with disability. As part of a research program, we used Q methodology to explore "what should guide the Australian research agenda?" People with disability, their families, community organizations and researchers were purposively recruited and sorted 25 statements, developed iteratively using data collated from systematic research mapping and a prior consultation process. The sorting grid ranged from -4 to +4, according to "Which topics should guide disability research the least to the most?" Factor analysis revealed four distinct but interrelated participant viewpoints. 52 participants (65 % female, aged 18-65+ years, 37 % people living with disability), sorted the statements. Viewpoint 1 - design and delivery of services across the lifespan. Viewpoint 2 - understanding the diverse experience of those with disability. Viewpoint 3 - designing systems to address impacts of disability for the individual, their families and society. Viewpoint 4 - addressing mental health for those with disability no matter where they live. These viewpoints focused on design and delivery of services to address the impacts of disabling environments and attitudes on individuals living with impairments, their families and society. The four viewpoints provide a framework for future disability research in consultation with those with lived experience.

Sections du résumé

BACKGROUND BACKGROUND
Globally, there are over an estimated one billion people with disability. Research priorities with a focus on diagnosis and treatment of conditions or policy and service initiatives, traditionally decided by researchers, may not align with priorities of those with lived experience of disability.
OBJECTIVE OBJECTIVE
To explore and inform disability research for Australia, including perspectives of people with disability.
METHODS METHODS
As part of a research program, we used Q methodology to explore "what should guide the Australian research agenda?" People with disability, their families, community organizations and researchers were purposively recruited and sorted 25 statements, developed iteratively using data collated from systematic research mapping and a prior consultation process. The sorting grid ranged from -4 to +4, according to "Which topics should guide disability research the least to the most?" Factor analysis revealed four distinct but interrelated participant viewpoints.
RESULTS RESULTS
52 participants (65 % female, aged 18-65+ years, 37 % people living with disability), sorted the statements. Viewpoint 1 - design and delivery of services across the lifespan. Viewpoint 2 - understanding the diverse experience of those with disability. Viewpoint 3 - designing systems to address impacts of disability for the individual, their families and society. Viewpoint 4 - addressing mental health for those with disability no matter where they live.
CONCLUSION CONCLUSIONS
These viewpoints focused on design and delivery of services to address the impacts of disabling environments and attitudes on individuals living with impairments, their families and society. The four viewpoints provide a framework for future disability research in consultation with those with lived experience.

Identifiants

pubmed: 38670868
pii: S1936-6574(24)00065-7
doi: 10.1016/j.dhjo.2024.101634
pii:
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

101634

Informations de copyright

Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.

Déclaration de conflit d'intérêts

Declaration of competing interest The authors have no competing interests to declare apart from a general interest in the findings given that the authors are all disability researchers with an interest in the field. Any potential conflicts of interest in the project will be mitigated by the public scrutiny of results and methods as they emerge, along with the collaborative nature of the large research consortium. The design, findings and interpretation of this study represent the Consortium's views and process, not those of the funder.

Auteurs

Simon Garbellini (S)

School of Allied Health, Curtin University, Bentley, WA, Australia; Kids Rehab WA, Perth Children's Hospital, Nedlands, WA, Australia. Electronic address: Simon.garbellini@health.wa.gov.au.

Angela Dew (A)

Disability and Inclusion, School of Health and Social Development, Faculty of Health, Institute for Health Transformation, Deakin University, Burwood, Victoria, Australia.

Christine Imms (C)

Murdoch Children's Research Institute, The University of Melbourne, Parkville, Victoria, Australia.

Simon Darcy (S)

Disability Research Network, University of Technology, Sydney, NSW, Australia.

Keith McVilly (K)

School of Social and Political Sciences, The University of Melbourne, Victoria, Australia.

Gisselle Gallego (G)

Centre for Disability Studies, Faculty of Medicine and Health, The University of Sydney, Australia; School of Medicine, The University of Notre Dame, Sydney, NSW, Australia.

Classifications MeSH