JMIR Publications

ABSTRACT

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, 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 to 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 utilize an integrated knowledge translation approach and will consist of 2 phases: 1) a scoping review to identify patient engagement models, theories, frameworks and guiding principles in the context of youth-specific research, and 2) a qualitative descriptive study using one-on-one semi-structured interviews with youth and family members to understand their conceptualization of meaningful engagement in health research.

Results:

The project will be carried out with funding from the Canadian Institutes of Health Research (CIHR).

Conclusions:

The findings from this project will be foundational to the development of a youth- and family-specific engagement in research framework called the UNITE framework, and a subsequent validated measure.