Living with Disability Research Centre, La Trobe University, Melbourne, Vic, Australia; and Summer Foundation, Melbourne, Vic, Australia.
Living with Disability Research Centre, La Trobe University, Melbourne, Vic, Australia; and School of Communication and Creative Arts, Deakin University, Melbourne, Vic, Australia; and School of Information and Communication Studies, Charles Sturt University, Wagga Wagga, NSW, Australia.
Brain Impair. 2024 Aug;25. doi: 10.1071/IB23102.
Background People with Multiple Sclerosis (MS) have unique housing and support needs that are essential for maintaining independence at home; however, there is limited research to guide the design of community living options for this population. The aim of this study was to examine housing and support needs and preferences of people with MS with the intention to inform the planning of a co-designed intervention based on the study's findings. Methods Using the Knowledge to Action (KTA) framework, quantitative (n =79) and qualitative (n =6) data from people with MS were extracted and integrated from projects completed by the research team that explored the housing and support needs and preferences of people with disability. Results were synthesised and presented to a reference group for validation, contextualisation, and adaptation to the Australian context. Results High physical support needs were common across participants. People most commonly required home modifications to improve accessibility, such as ramps, equipment such as heating and cooling, and assistive technology. Many people required more than 8 hours per day of paid support. Moving into individualised housing facilitated independence and community reintegration. People reported gaps between what they wanted from support workers and what they received, citing individual and systemic barriers. Conclusion People with MS have support needs that require proactive and responsive funding arrangements, housing design and support provision. In line with KTA principles, findings will inform the planning of a co-designed intervention that involves people with lived experience of MS and other stakeholders to influence policy and improve home and living outcomes for this population.
多发性硬化症（MS）患者有独特的住房和支持需求，这些需求对于维持他们在家中的独立性至关重要；然而，目前针对这一人群的社区居住选择，相关研究非常有限。本研究旨在探讨多发性硬化症患者的住房和支持需求及偏好，旨在根据研究结果为基于共同设计的干预措施的规划提供信息。
使用知识转化（KTA）框架，从研究团队完成的探索残疾人士住房和支持需求及偏好的项目中提取并整合了多发性硬化症患者的定量（n=79）和定性（n=6）数据。综合结果并提交给参考小组进行验证、背景化和适应当地澳大利亚的情况。
参与者普遍存在较高的身体支持需求。大多数人最需要进行房屋改造以提高可达性，例如安装坡道、配备加热和冷却设备以及辅助技术。许多人每天需要超过 8 小时的付费支持。搬进个性化住房有助于实现独立性和社区重新融入。人们报告说，他们对支持工作者的期望与他们实际得到的之间存在差距，提到了个人和系统障碍。
多发性硬化症患者的支持需求需要积极主动和响应式的资金安排、住房设计和支持提供。根据 KTA 原则，研究结果将为共同设计的干预措施的规划提供信息，该干预措施将涉及有多发性硬化症患者生活经验的个人和其他利益相关者，以影响政策并改善这一人群的家庭和生活结果。
