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迈向长期居住护理中的公平代表性:扩大范围以确保研究团队中有“重要声音”。

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

作者信息

Hande Mary Jean, Owusu Prince, Aubrecht Katie, Cloutier Denise, Estabrooks Carole, Keefe Janice

机构信息

Trent University, Peterborough, Canada.

Carleton University, Ottawa, Canada.

出版信息

Res Involv Engagem. 2024 Mar 25;10(1):34. doi: 10.1186/s40900-024-00562-6.

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.

摘要

新冠疫情暴露了加拿大长期居住护理(LTRC)部门长期存在的不公平现象,这些现象带来了危及生命的后果。在居住于长期居住护理机构以及在其中工作的人群中,边缘化群体的占比过高,但在长期居住护理研究中,他们的声音却普遍被忽视。对这些被忽视声音的担忧引发了关于如何改变长期居住护理政策的讨论,以更好地解决长期存在的不公平现象,并改善那些在长期居住护理机构生活和工作的人们的尊严得以维系的条件。通过对有关长期居住护理的历史和文化态度进行分析,并结合让有实际生活经历的人参与其中的可行策略,我们认为,那些在长期居住护理机构中有生活和工作(包括有偿和无偿)实际经历的人的声音,对于从伦理和实效上改变长期存在的不公平现象至关重要。一项为期四年的全国性多学科研究项目,即“老年人让岁月更有意义”(SALTY)项目的经验表明,通过在研究过程中以居民、他们的家人/朋友、直接护理人员、志愿者以及患有痴呆症的人的视角为核心,可以将居民决定的生活质量作为优先事项。因此,我们强调了纳入这些声音的策略,以便能够实现有意义且有影响力的系统变革。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9056/10964642/ce59e86792c5/40900_2024_562_Fig1_HTML.jpg

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