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生活体验之声:长期护理研究项目中公民团队成员的反思

The voices of lived experience: reflections from citizen team members in a long-term care research program.

作者信息

Mann Jim, Bishop Roberta, Bond Graham, Forbes Faye, Kieloch Barbara, Thelker Christine, Chamberlain Stephanie A

机构信息

Translating Research in Elder Care (TREC) Research Program, Level 3, Edmonton Clinic Health Academy, Faculty of Nursing, Voices Of (potential) Incoming residents, Caregivers Educating uS (VOICES), University of Alberta, 11405 87 Ave, Edmonton, AB, T6G 1C9, Canada.

Department of Family Medicine, Faculty of Medicine and Dentistry, University of Alberta, 6-50 University Terrace, Edmonton, AB, T6G 2T4, Canada.

出版信息

Res Involv Engagem. 2021 Oct 2;7(1):69. doi: 10.1186/s40900-021-00312-y.

DOI:10.1186/s40900-021-00312-y
PMID:34600593
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8487564/
Abstract

BACKGROUND

The Translating Research in Elder Care (TREC) program is a partnered health services research team that aims to improve the quality of care and quality of life for residents and quality of worklife for staff in nursing homes. The TREC team undertook several activities to enhance the collaboration between the academic researchers and us, the citizen members. Known as VOICES (Voice Of (potential) Incoming residents, Caregivers Educating uS) we aim to share our experience working with a large research team.

METHODS

We reflect on the findings reported in the paper by Chamberlain et al. (2021). They described the findings from two surveys (May 2018, July 2019) that were completed by TREC team members (researchers, trainees, staff, decision-makers, citizens). The survey questions asked about the respondents' experience with citizen engagement, their perceptions of the benefits and challenges of citizen engagement, and their unmet needs for training.

RESULTS

The paper reported on the survey findings from all the survey respondents (research team, decision-makers, citizens), but much of the results focused on the researcher perspective. They reported that respondents believed that citizen engagement was a benefit to their research but noted many challenges. While we appreciate the researchers' positive perceptions of citizen engagement, much work remains to fully integrate us into all stages of the research. We offer our reflections and suggestions for how to work with citizen members and identify areas for more training and support.

CONCLUSIONS

Despite the increased interest in citizen engagement, we feel there is a lack of understanding and support to truly integrate non-academic team members on research teams. We hope the discussion in this commentary identifies specific areas that need to be addressed to support the continued engagement of citizens and show how the lived experience can bring value to research teams.

摘要

背景

老年护理翻译研究(TREC)项目是一个合作的卫生服务研究团队,旨在提高养老院居民的护理质量和生活质量以及工作人员的工作生活质量。TREC团队开展了多项活动,以加强学术研究人员与作为公民成员的我们之间的合作。我们名为VOICES(潜在入住居民、护理人员教育我们的声音),旨在分享我们与大型研究团队合作的经验。

方法

我们思考了张伯伦等人(2021年)论文中报告的研究结果。他们描述了TREC团队成员(研究人员、实习生、工作人员、决策者、公民)完成的两项调查(2018年5月、2019年7月)的结果。调查问题询问了受访者在公民参与方面的经历、他们对公民参与的益处和挑战的看法,以及他们未得到满足的培训需求。

结果

该论文报告了所有调查受访者(研究团队、决策者、公民)的调查结果,但大部分结果集中在研究人员的观点上。他们报告说,受访者认为公民参与对他们的研究有益,但也指出了许多挑战。虽然我们赞赏研究人员对公民参与的积极看法,但要将我们完全融入研究的所有阶段仍有许多工作要做。我们就如何与公民成员合作提出了我们的思考和建议,并确定了需要更多培训和支持的领域。

结论

尽管对公民参与的兴趣有所增加,但我们认为在真正将非学术团队成员纳入研究团队方面缺乏理解和支持。我们希望本评论中的讨论能够确定需要解决的具体领域,以支持公民的持续参与,并展示生活经验如何能为研究团队带来价值。

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本文引用的文献

1
Evolving partnerships: engagement methods in an established health services research team.不断发展的伙伴关系:一个成熟的卫生服务研究团队中的参与方法
Res Involv Engagem. 2021 Oct 9;7(1):71. doi: 10.1186/s40900-021-00314-w.
2
Citizen and stakeholder led priority setting for long-term care research: identifying research priorities within the Translating Research in Elder Care (TREC) Program.由公民和利益相关者主导的长期护理研究优先级设定:在老年护理转化研究(TREC)项目中确定研究优先级
Res Involv Engagem. 2020 May 15;6:24. doi: 10.1186/s40900-020-00199-1. eCollection 2020.
3
Team-Based Integrated Knowledge Translation for Enhancing Quality of Life in Long-term Care Settings: A Multi-method, Multi-sectoral Research Design.基于团队的综合知识转化,以提高长期护理环境中的生活质量:一种多方法、多部门的研究设计。
Int J Health Policy Manag. 2020 Apr 1;9(4):138-142. doi: 10.15171/ijhpm.2019.123.
4
Early-career researchers' views on ethical dimensions of patient engagement in research.早期职业研究人员对患者参与研究的伦理维度的看法。
BMC Med Ethics. 2018 Mar 7;19(1):21. doi: 10.1186/s12910-018-0260-y.
5
Translating research in elder care: an introduction to a study protocol series.老年护理研究的翻译:研究方案系列介绍。
Implement Sci. 2009 Aug 10;4:51. doi: 10.1186/1748-5908-4-51.