Hawke Lisa D, Dada-Phillips Wuraola, Seiyad Hajar, Orson Josh, Goldsmith Lianne, Conway Susan, Jordan Adam, Sheikhan Natasha Y, Hiebert Melissa, Kidd Sean, Kuluski Kerry
CAMH Education Research, University of Toronto Department of Psychiatry, Toronto, Canada.
CAMH Education Research, Toronto, Canada.
Health Expect. 2025 Feb;28(1):e70152. doi: 10.1111/hex.70152.
People with lived experience of mental health and/or substance use conditions and their families (PWLE) are increasingly engaged in research, yet rigorous guidelines for engagement are lacking. This study aims to co-design best practice guidelines to support the authentic, meaningful engagement of PWLE in mental health and/or substance use health research.
A multi-panel modified Delphi study was conducted with 61 expert panelists (35 PWLE and family members, 26 researchers/research support staff from across Canada). Participants rated 56 recommendations for importance and clarity. Consensus was defined as ≥ 70% of participants rating items at 6 or 7 on a 7-point Likert scale ('very important' or 'essential'). Qualitative feedback was analysed using content analysis to identify new items and reviewed for improvements in item clarity. After each round, items not meeting the established threshold of importance were removed. Items with low clarity scores were reworded. A PWLE advisory panel was actively involved throughout the study's design, implementation, interpretation, and reporting, ensuring that the perspectives of people with lived experience were integrated throughout the research process.
Three Delphi Rounds were conducted. In Round 1, importance ratings ranged from 51.7% to 96.7% of participants ranking the items above the established threshold (average 80.1%), with clarity ratings ranging from 39.3% to 86.9% (average 70.7%) and an average importance coefficient of variation (CV) of 0.16. Four items were deleted, two new items were added and fifty-five items were revised. In Round 2, 60 (98.4%) participants responded. Importance ratings ranged from 57.6% to 96.7% (average 80.2%; average CV = 0.20). Clarity ratings ranged from 50.9% to 93.2% (average 77.9%). Five items were deleted and eleven revised. In Round 3, 60 (98.4%) participants provided importance ratings ranging from 66.7% to 98.3% (average 80.8%; average CV = 0.20), and clarity ratings ranging from 63.3% to 94.9% (average 81.1%). Three items were deleted and nine were revised. Forty-four final best practices are proposed.
These co-developed best practice guidelines offer recommendations for meaningful PWLE engagement in mental health and/or substance use health research. By following these guidelines, research teams can ensure that PWLE contributions are genuinely valued and effectively integrated, ultimately enhancing the quality and impact of the research and fostering authentic collaboration.
People with lived experience were engaged throughout the project as key team members, from a patient-oriented research perspective. They are also co-authors on this manuscript.
有心理健康和/或物质使用状况生活经历的人及其家人（PWLE）越来越多地参与到研究中，但缺乏关于参与的严格指导方针。本研究旨在共同设计最佳实践指南，以支持PWLE在心理健康和/或物质使用健康研究中的真实、有意义的参与。
对61名专家小组成员（35名PWLE及其家庭成员、26名来自加拿大各地的研究人员/研究支持人员）进行了多小组改良德尔菲研究。参与者对56条建议的重要性和清晰度进行评分。共识定义为≥70%的参与者在7点李克特量表（“非常重要”或“必不可少”）上对项目评分为6或7。使用内容分析法对定性反馈进行分析，以识别新项目，并审查项目清晰度的改进情况。在每一轮之后，删除未达到既定重要性阈值的项目。清晰度得分低的项目重新措辞。一个PWLE咨询小组在研究的设计、实施、解释和报告过程中积极参与，确保有生活经历者的观点在整个研究过程中得到整合。
进行了三轮德尔菲研究。在第一轮中，重要性评分范围为51.7%至96.7%的参与者将项目排在既定阈值之上（平均80.1%），清晰度评分范围为39.3%至86.9%（平均70.7%），平均重要性变异系数（CV）为0.16。删除了4个项目，添加了2个新项目，55个项目进行了修订。在第二轮中，60名（98.4%）参与者做出了回应。重要性评分范围为57.6%至96.7%（平均80.2%；平均CV = 0.20）。清晰度评分范围为50.9%至93.2%（平均77.9%）。删除了5个项目，11个项目进行了修订。在第三轮中，60名（98.4%）参与者给出的重要性评分范围为66.7%至98.3%（平均80.8%；平均CV = 0.20），清晰度评分范围为63.3%至94.9%（平均81.1%）。删除了3个项目，9个项目进行了修订。提出了44条最终最佳实践。
这些共同制定的最佳实践指南为PWLE在心理健康和/或物质使用健康研究中的有意义参与提供了建议。通过遵循这些指南，研究团队可以确保真正重视PWLE的贡献并有效整合，最终提高研究的质量和影响力，并促进真实的合作。
从以患者为导向的研究角度来看，有生活经历者在整个项目中作为关键团队成员参与其中。他们也是本手稿的共同作者。
