Munce Sarah E P, Jarrett Clementine, Senthilnathan Vjura, Luong Dorothy, Allemang Brooke, Bailey Katherine, Biddiss Elaine, Britto Maria T, Buchanan Francine, Cassidy Christine, Cross Andrea, Cunningham Jessie, Dimitropoulos Gina, Hadland Scott E, Kastner Monika, Killackey Tieghan, Kokorelias Kristina, Macarthur Colin, Micsinszki Samantha, Niles Chavon, Wright F Virginia, Toulany Alene
Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.
Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.
JMIR Res Protoc. 2025 Mar 28;14:e65733. doi: 10.2196/65733.
Youth and families play an indispensable role in health research, given their unique lived experiences and expertise. Aligning research with patients' needs, values, and preferences can significantly enhance its relevance and impact; however, recent research has highlighted various challenges and risks associated with youth and family engagement in health research. These challenges encompass the perils of tokenism, power imbalances and dynamics, questioning the motives behind engagement, and limited accessibility to patient-friendly training for patient partners, as well as inadequate training on patient engagement for researchers and the absence of equitable engagement tools. To address these risks and challenges, different patient engagement models, theories, frameworks, and guiding principles have been developed and adopted; to date, however, their transferability to youth- and family-specific engagement in research has been limited.
The objectives of this project are (1) to determine the extent of the literature on the application of patient engagement models, theories, frameworks, and guiding principles in the context of youth-specific research; and (2) to determine how meaningful the key components and constructs of these models, theories, frameworks, and guiding principles are to youth and their family members.
This project will use an integrated knowledge translation approach and consists of 2 phases: (1) a scoping review to identify patient engagement models, theories, frameworks and guiding principles in youth research; and (2) a qualitative descriptive study using one-on-one semistructured interviews with youth and family members to understand their conceptualization of meaningful engagement in health research. For phase 1, the following databases were searched: Medline, CINAHL, EMBASE, PsycINFO, and the Cochrane Central Register of Controlled Trials. Literature from 2013 to August 28, 2024, was captured. Primary studies using a patient engagement in research model, theory, or framework, or guiding principles, in youth will be included. The risk of bias of included studies will not be assessed. Extracted data will be quantitatively summarized using numerical counts and qualitatively using content analysis. For phase 2, we will recruit 9 to 17 youth and 9 to 17 family members. Transcripts will be analyzed using an inductive approach outlined by Braun and Clarke.
The project has received funding from the Canadian Institutes of Health Research. A 9-member integrated knowledge translation panel consisting of 6 youth and 3 family members has been established.
The findings from this study will identify what is currently known about the application of patient engagement models, theories, frameworks, and guiding principles in youth-specific research and the important components of these models, theories, frameworks, and guiding principles from the perspective of youth and their families. These findings will be instrumental to developing a youth- and family-specific engagement in research framework called the UNITE framework and subsequently, a validated measure.
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/65733.
鉴于年轻人及其家庭独特的生活经历和专业知识，他们在健康研究中发挥着不可或缺的作用。使研究与患者的需求、价值观和偏好保持一致，可以显著提高研究的相关性和影响力；然而，最近的研究强调了年轻人及其家庭参与健康研究所面临的各种挑战和风险。这些挑战包括形式主义的危害、权力不平衡及动态变化、对参与背后动机的质疑、患者伙伴难以获得适合患者的培训，以及研究人员在患者参与方面的培训不足和缺乏公平的参与工具。为应对这些风险和挑战，已开发并采用了不同的患者参与模式、理论、框架和指导原则；然而，迄今为止，它们在针对年轻人及其家庭的研究参与中的可转移性有限。
本项目的目标是：（1）确定关于患者参与模式、理论、框架和指导原则在针对年轻人的研究中的应用的文献范围；（2）确定这些模式、理论、框架和指导原则的关键组成部分和结构对年轻人及其家庭成员的意义。
本项目将采用综合知识转化方法，包括两个阶段：（1）一项范围综述，以确定针对年轻人的研究中的患者参与模式、理论、框架和指导原则；（2）一项定性描述性研究，通过与年轻人及其家庭成员进行一对一的半结构化访谈，了解他们对健康研究中有意义参与的概念化理解。对于第一阶段，检索了以下数据库：医学文献数据库（Medline）、护理学与健康领域数据库（CINAHL）、荷兰医学文摘数据库（EMBASE）、心理学文摘数据库（PsycINFO）和考克兰对照试验中心注册库。收集了2013年至2024年8月28日的文献。将纳入在针对年轻人的研究中使用患者参与研究模式、理论、框架或指导原则的原发性研究。将不评估纳入研究的偏倚风险。提取的数据将使用数字计数进行定量汇总，并使用内容分析进行定性汇总。对于第二阶段，我们将招募9至17名年轻人和9至17名家庭成员。将使用布劳恩和克拉克概述的归纳法分析访谈记录。
该项目已获得加拿大卫生研究院的资助。已成立了一个由9名成员组成的综合知识转化小组，其中包括6名年轻人和3名家庭成员。
本研究的结果将确定目前关于患者参与模式、理论、框架和指导原则在针对年轻人的研究中的应用的已知情况，以及从年轻人及其家庭的角度来看这些模式、理论、框架和指导原则的重要组成部分。这些结果将有助于制定一个名为“团结”（UNITE）框架的针对年轻人及其家庭的研究参与框架，随后制定一项经过验证的测量方法。
国际注册报告识别码（IRRID）：PRR1-10.2196/65733。
