Sheikhan Natasha Y, Kuluski Kerry, Hiebert Melissa, Munro Charlotte, Cappe Vivien, van Kesteren Mary Rose, Kidd Sean, Hawke Lisa D
Institute of Health Policy, Management, and Evaluation, University of Toronto, Toronto, Canada.
Centre for Addiction and Mental Health, Toronto, Canada.
Health Expect. 2025 Apr;28(2):e70198. doi: 10.1111/hex.70198.
There is a move towards engaging people with lived experience and families (PWLE/F)-also referred to as PWLE/F engagement-in mental health and/or substance use research. However, PWLE/F engagement is inadequately reported on in mental health and/or substance use research papers.
To understand what PWLE/F and researchers perceive are important components to report on related to engagement in mental health and/or substance use research.
This study included a qualitative description study underpinned by pragmatism. Data were collected through virtual interviews with 13 PWLE/F and 12 researchers across Canada and analysed using template analysis. The results were used to develop a reporting guidance document for engagement in mental health and/or substance use research.
The results from the template analysis were structured through the following themes: (1) establishing the need for a guidance document; (2) aspects of engagement to report and reflect on; (3) guidance around co-authorship with PWLE/F; (4) practical tips for reporting on engagement and (5) considerations for journals. Participants identified a need for tailored guidance that is flexible and reflective, yet can promote transparency, accountability and learning in the field. A reporting guidance document was developed for engagement in mental health and/or substance use research that balances flexibility and standardisation while incorporating reflection into reporting. Guidance around co-authorship with PWLE/F partners was also included.
The guidance document is intended to be used as a roadmap to help guide authors to meaningfully write about engagement without the rigid boundaries of a reporting guideline. We encourage research teams that engage PWLE/F in mental health and/or substance use research to consider using the guidance document as they write up their work.
PWLE/F members were engaged throughout the study from conception to manuscript production. This included a PWLE partner on the doctoral committee and a Lived Experience Advisory Group consisting of two PWLE and one family partner.
在心理健康和/或物质使用研究中，正朝着让有生活经历者及其家人（PWLE/F，也称为PWLE/F参与）参与研究的方向发展。然而，心理健康和/或物质使用研究论文对PWLE/F参与的报道并不充分。
了解PWLE/F和研究人员认为在心理健康和/或物质使用研究中，与参与相关的重要报告内容。
本研究包括一项以实用主义为基础的定性描述性研究。通过对加拿大各地13名PWLE/F和12名研究人员进行虚拟访谈收集数据，并使用模板分析法进行分析。研究结果用于制定心理健康和/或物质使用研究参与情况的报告指导文件。
模板分析的结果通过以下主题进行构建：（1）确定制定指导文件的必要性；（2）报告和反思的参与方面；（3）与PWLE/F共同署名的指导；（4）参与情况报告的实用技巧；（5）期刊的考量因素。参与者认为需要有针对性的、灵活且具有反思性的指导，同时能促进该领域的透明度、问责制和学习。制定了一份心理健康和/或物质使用研究参与情况的报告指导文件，该文件在平衡灵活性和标准化的同时，将反思纳入报告中。还包括了与PWLE/F合作伙伴共同署名的指导。
该指导文件旨在作为一份路线图，帮助指导作者在不受报告指南严格限制的情况下，有意义地撰写关于参与情况的内容。我们鼓励在心理健康和/或物质使用研究中让PWLE/F参与的研究团队在撰写研究报告时考虑使用该指导文件。
从研究构思到稿件撰写，PWLE/F成员全程参与了本研究。这包括博士委员会中的一名PWLE合作伙伴以及一个由两名PWLE和一名家属合作伙伴组成的生活经历咨询小组。
