Patients are essential partners in health research because their lived experiences and knowledge can enhance the quality, relevance, and impact of research. While there are benefits of patient engagement for patient partners, researchers, and research projects, there are also challenges and risks associated with it. Some examples of these include: risks of tokenism, power imbalances and dynamics, lack of accessible and patient-friendly training for patient partners, and not having the tools for equitable engagement. To address these challenges and risks, patient engagement frameworks have been created and adopted. While these frameworks have contributed to more meaningful patient engagement in health research, they have limited transferability to youth- and family-specific engagement.
STUDY OBJECTIVES:
1) To determine the extent of literature on the applicationof patient engagement models, theories, frameworks, and guiding principles designed for adults in the context of youth-specific research; and, building on the learnings from the literature;
2) To understand the key components and constructs of these models, theories,frameworks, and guiding principles that are meaningful to youth and their family members (e.g., what does/does not resonate with youth and family members).
Collectively, these findings will be foundational to the development of a youth and family specific engagement in research (UNITE) framework, and later, tool to measure meaningful engagement in research for youth and families.
Phase 1: Scoping Review on Models, Theories and Frameworks
Phase 2: Qualitative Descriptive Study
1. Munce SEP, Jarrett C, Senthilnathan V, Luong D, Allemang B, Bailey K, Biddiss E, Britto MT, Buchanan F, Cassidy C, Cross A, Cunningham J, Dimitropoulos G, Hadland SE, Kastner M, Killackey T, Kokorelias K, Macarthur C, Micsinszki S, Niles C, Wright FV, Toulany A. Development of a Framework for Youth- and Family-Specific Engagement in Research: Proposal for a Scoping Review and Qualitative Descriptive Study. JMIR Res Protoc. 2025 Mar 28;14:e65733. doi: 10.2196/65733. PMID: 40153797; PMCID: PMC11992488.
