Towards equitable representation in long-term residential care: widening the circle to ensure “essential voices” in research teams

The COVID-19 pandemic exposed long-standing inequities in Canada’s long-term residential care (LTRC) sector with life-threatening consequences. People from marginalized groups are overrepresented among those who live in, and work in LTRC facilities, yet their voices are generally silenced in LTRC research. Concerns about these silenced voices have sparked debate around ways to change LTRC policy to better address long-standing inequities and enhance the conditions that foster dignity for those who live and work in LTRC. Weaving an analysis of historical and cultural attitudes about LTRC, and promising strategies for engaging people with lived experience, we argue that the voices of people with lived experience of life and work (paid and unpaid) in LTRC are essential for ethically and effectively shifting long-standing inequities. Lessons from a 4-year, national, multi-disciplinary research study, known as the Seniors Adding Life to Years (SALTY) project, suggest that resident-determined quality of life can be prioritized by centring the perspectives of residents, their family/friends, direct care workers, volunteers, and people living with dementia in the research process. Accordingly, we highlight strategies to include these voices so that meaningful and impactful system change can be realized. This article argues that long-term residential care facilities in Canada have a long history of perpetuating social inequalities, beginning with seventeenth century poor houses and almshouses, from which long-term residential care facilities evolved in North America. We highlight that those who currently reside in long-term residential care are more likely to be people with less social power—for example women, people living with dementia, and people with low-income. These residents are rarely included in research projects as co-designers of research, co-producers of knowledge, or experts on the realities of long-term residential care. We explore strategies for addressing these underrepresented voices and inequalities in research by highlighting promising examples of resident, family, and worker-engagement emerging from a pre-pandemic to early pandemic pan-Canadian research project on quality of life in long-term residential care. We argue that long-term residential care residents, their family/friend caregivers, people living with dementia, and direct care workers have voices that are essential in residential care design and research engagement strategies. By prioritizing these voices in research, we can better amplify their critical perspectives in broader policy and decision-making processes that guide meaningful and impactful system change.