School of Allied Health, Curtin University, Bentley, WA, Australia; Kids Rehab WA, Perth Children's Hospital, Nedlands, WA, Australia.
Disability and Inclusion, School of Health and Social Development, Faculty of Health, Institute for Health Transformation, Deakin University, Burwood, Victoria, Australia.
Disabil Health J. 2024 Jul;17(3):101634. doi: 10.1016/j.dhjo.2024.101634. Epub 2024 Apr 23.
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.
全球估计有超过 10 亿人残疾。传统上，研究重点是针对疾病的诊断和治疗，或政策和服务举措，这些重点可能与残疾人士的生活经历不符。
探索和为澳大利亚的残疾研究提供信息，包括残疾人士的观点。
作为研究计划的一部分，我们使用 Q 方法探讨“什么应该指导澳大利亚的研究议程？”我们有目的地招募了残疾人士、他们的家人、社区组织和研究人员，并对 25 个陈述进行了分类，这些陈述是通过系统研究图谱和先前的协商过程中收集的数据迭代开发的。排序网格的范围从-4 到+4，根据“哪些主题应该对残疾研究的指导最少？”因素分析揭示了四个不同但相互关联的参与者观点。
52 名参与者（65%为女性，年龄在 18-65 岁以上，37%为残疾人士）对这些陈述进行了分类。观点 1-终身服务的设计和交付。观点 2-理解残疾人士的不同经历。观点 3-设计系统以解决残疾对个人、其家庭和社会的影响。观点 4-无论残疾人士生活在哪里，都要解决他们的心理健康问题。
这些观点侧重于设计和提供服务，以解决残疾环境和态度对残疾人士及其家庭和社会的影响。这四个观点为与有生活经验的人协商进行未来的残疾研究提供了框架。
