Empowering younger residents living in long-term care homes as co-researchers

Abstract

We draw on our research, our lived experiences of disability and the grounded expertise of disabled persons living in long-term care (LTC) homes as co-researchers, to illustrate the value of disability-led participatory research. Our approach to a co-designed collaborative project on young adults living in LTC highlights the benefits of research that centers the lived realities of disabled people. Points of interest Research and knowledge about disabled people living in long-term care (LTC) homes routinely excludes the perspectives of the people who live there; this is especially true for younger residents living in LTC. This article shares information about a study on promising approaches to residential LTC for people under 65 years of age that was co-led with care home resident researchers. The study design provided opportunities and supports to encourage meaningful engagement, such as training and access to research assistants. Resident co-researchers brought lived expertise and experiential insights that enriched the research process and knowledge produced, and that supported them in their own disability advocacy work. Inequities persist when budgets fail to consider and address barriers to residents’ full participation in all aspects of the research.