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 i...
| Main Authors: | , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2024-03-01
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| Series: | Research Involvement and Engagement |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s40900-024-00562-6 |
| _version_ | 1797233189091016704 |
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| author | Mary Jean Hande Prince Owusu Katie Aubrecht Denise Cloutier Carole Estabrooks Janice Keefe |
| author_facet | Mary Jean Hande Prince Owusu Katie Aubrecht Denise Cloutier Carole Estabrooks Janice Keefe |
| author_sort | Mary Jean Hande |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-04-24T16:12:13Z |
| format | Article |
| id | doaj.art-803e3c74188942749b5cc40ee5e2f330 |
| institution | Directory Open Access Journal |
| issn | 2056-7529 |
| language | English |
| last_indexed | 2024-04-24T16:12:13Z |
| publishDate | 2024-03-01 |
| publisher | BMC |
| record_format | Article |
| series | Research Involvement and Engagement |
| spelling | doaj.art-803e3c74188942749b5cc40ee5e2f3302024-03-31T11:38:08ZengBMCResearch Involvement and Engagement2056-75292024-03-0110111010.1186/s40900-024-00562-6Towards equitable representation in long-term residential care: widening the circle to ensure “essential voices” in research teamsMary Jean Hande0Prince Owusu1Katie Aubrecht2Denise Cloutier3Carole Estabrooks4Janice Keefe5Trent UniversityCarleton UniversitySt. Francis Xavier UniversityUniversity of VictoriaUniversity of AlbertaMount Saint Vincent UniversityAbstract 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.https://doi.org/10.1186/s40900-024-00562-6Long-term residential careCOVID-19EquityRepresentationQuality of lifeLived experience |
| spellingShingle | Mary Jean Hande Prince Owusu Katie Aubrecht Denise Cloutier Carole Estabrooks Janice Keefe Towards equitable representation in long-term residential care: widening the circle to ensure “essential voices” in research teams Research Involvement and Engagement Long-term residential care COVID-19 Equity Representation Quality of life Lived experience |
| title | Towards equitable representation in long-term residential care: widening the circle to ensure “essential voices” in research teams |
| title_full | Towards equitable representation in long-term residential care: widening the circle to ensure “essential voices” in research teams |
| title_fullStr | Towards equitable representation in long-term residential care: widening the circle to ensure “essential voices” in research teams |
| title_full_unstemmed | Towards equitable representation in long-term residential care: widening the circle to ensure “essential voices” in research teams |
| title_short | Towards equitable representation in long-term residential care: widening the circle to ensure “essential voices” in research teams |
| title_sort | towards equitable representation in long term residential care widening the circle to ensure essential voices in research teams |
| topic | Long-term residential care COVID-19 Equity Representation Quality of life Lived experience |
| url | https://doi.org/10.1186/s40900-024-00562-6 |
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