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

Abstract

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.