TY  - JOUR
AU  - Munce, Sarah E P
AU  - Jarrett, Clementine
AU  - Senthilnathan, Vjura
AU  - Luong, Dorothy
AU  - Allemang, Brooke
AU  - Bailey, Katherine
AU  - Biddiss, Elaine
AU  - Britto, Maria T
AU  - Buchanan, Francine
AU  - Cassidy, Christine
AU  - Cross, Andrea
AU  - Cunningham, Jessie
AU  - Dimitropoulos, Gina
AU  - Hadland, Scott E
AU  - Kastner, Monika
AU  - Killackey, Tieghan
AU  - Kokorelias, Kristina
AU  - Macarthur, Colin
AU  - Micsinszki, Samantha
AU  - Niles, Chavon
AU  - Wright, F Virginia
AU  - Toulany, Alene
PY  - 2025
DA  - 2025/3/28
TI  - Development of a Framework for Youth- and Family-Specific Engagement in Research: Proposal for a Scoping Review and Qualitative Descriptive Study
JO  - JMIR Res Protoc
SP  - e65733
VL  - 14
KW  - youth and family engagement
KW  - frameworks
KW  - implementation science
KW  - scoping review
KW  - qualitative
AB  - Background: 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. Objective: 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. Methods: 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. Results: 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. Conclusions: 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 
SN  - 1929-0748
UR  - https://www.researchprotocols.org/2025/1/e65733
UR  - https://doi.org/10.2196/65733
DO  - 10.2196/65733
ID  - info:doi/10.2196/65733
ER  -