. 2025 Mar 28:14:e65733.

doi: 10.2196/65733.

Development of a Framework for Youth- and Family-Specific Engagement in Research: Proposal for a Scoping Review and Qualitative Descriptive Study

Sarah E P Munce^{1

2

3

4}, Clementine Jarrett^{5

6

7}, Vjura Senthilnathan^{1

2

8}, Dorothy Luong^{1

2

9}, Brooke Allemang^{8

10

11}, Katherine Bailey¹², Elaine Biddiss^{1

2

3

13}, Maria T Britto^{14

15}, Francine Buchanan^{4

8

10

16}, Christine Cassidy^{17

18}, Andrea Cross^{19

20

21}, Jessie Cunningham²², Gina Dimitropoulos²³, Scott E Hadland^{24

25}, Monika Kastner^{4

26}, Tieghan Killackey^{27

28}, Kristina Kokorelias^{3

29

30}, Colin Macarthur⁸, Samantha Micsinszki^{19

20}, Chavon Niles^{3

31}, F Virginia Wright^{1

2

31}, Alene Toulany^{4

8

10

12

32

33}

Affiliations

¹ Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.
² Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.
³ Rehabilitation Sciences Institute, University of Toronto, Toronto, ON, Canada.
⁴ Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
⁵ The Canadian Coalition for Rights of Children, Toronto, ON, Canada.
⁶ Institute of Interdisciplinary Studies, Carleton University, Ottawa, ON, Canada.
⁷ Feminist Institute of Social Transformation, Carleton University, Ottawa, Canada.
⁸ Child Health Evaluative Sciences, SickKids Research Institute, Toronto, ON, Canada.
⁹ KITE, Toronto Rehabilitation Institute, University Health Network, Toronto, ON, Canada.
¹⁰ The Hospital for Sick Children, Toronto, ON, Canada.
¹¹ Factor-Inwentash Faculty of Social Work, University of Toronto, Toronto, ON, Canada.
¹² Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
¹³ Institute of Biomedical Engineering, University of Toronto, Toronto, ON, Canada.
¹⁴ James M Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States.
¹⁵ Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, United States.
¹⁶ SickKids Research Institute, Toronto, ON, Canada.
¹⁷ School of Nursing, Dalhousie University, Halifax, NS, Canada.
¹⁸ Strengthening Transitions in Care Lab, IWK Health, Halifax, NS, Canada.
¹⁹ CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada.
²⁰ Department of Pediatrics, McMaster University, Hamilton, ON, Canada.
²¹ School of Rehabilitation Science, McMaster University, Hamilton, ON, Canada.
²² Health Sciences Library, Hospital for Sick Children, Toronto, ON, Canada.
²³ Faculty of Social Work, University of Calgary, Calgary, AB, Canada.
²⁴ Division of Adolescent and Young Adult Medicine, Mass General for Children, Boston, MA, United States.
²⁵ Department of Pediatrics, Harvard Medical School, Boston, MA, United States.
²⁶ North York General Hospital, Toronto, ON, Canada.
²⁷ Toronto General Hospital Research Institute, University Health Network, Toronto, ON, Canada.
²⁸ Lawrence Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada.
²⁹ Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, ON, Canada.
³⁰ Section of Geriatric Medicine, Department of Medicine, Sinai Health, Toronto, ON, Canada.
³¹ Department of Physical Therapy, University of Toronto, Toronto, ON, Canada.
³² Department of Pediatrics, University of Toronto, Toronto, ON, Canada.
³³ ICES, Toronto, ON, Canada.

PMID: 40153797
PMCID: PMC11992488
DOI: 10.2196/65733

Development of a Framework for Youth- and Family-Specific Engagement in Research: Proposal for a Scoping Review and Qualitative Descriptive Study

Sarah E P Munce et al. JMIR Res Protoc. 2025.

. 2025 Mar 28:14:e65733.

doi: 10.2196/65733.

Authors

Affiliations

¹ Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.
² Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.
³ Rehabilitation Sciences Institute, University of Toronto, Toronto, ON, Canada.
⁴ Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
⁵ The Canadian Coalition for Rights of Children, Toronto, ON, Canada.
⁶ Institute of Interdisciplinary Studies, Carleton University, Ottawa, ON, Canada.
⁷ Feminist Institute of Social Transformation, Carleton University, Ottawa, Canada.
⁸ Child Health Evaluative Sciences, SickKids Research Institute, Toronto, ON, Canada.
⁹ KITE, Toronto Rehabilitation Institute, University Health Network, Toronto, ON, Canada.
¹⁰ The Hospital for Sick Children, Toronto, ON, Canada.
¹¹ Factor-Inwentash Faculty of Social Work, University of Toronto, Toronto, ON, Canada.
¹² Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
¹³ Institute of Biomedical Engineering, University of Toronto, Toronto, ON, Canada.
¹⁴ James M Anderson Center for Health Systems Excellence, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States.
¹⁵ Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, United States.
¹⁶ SickKids Research Institute, Toronto, ON, Canada.
¹⁷ School of Nursing, Dalhousie University, Halifax, NS, Canada.
¹⁸ Strengthening Transitions in Care Lab, IWK Health, Halifax, NS, Canada.
¹⁹ CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada.
²⁰ Department of Pediatrics, McMaster University, Hamilton, ON, Canada.
²¹ School of Rehabilitation Science, McMaster University, Hamilton, ON, Canada.
²² Health Sciences Library, Hospital for Sick Children, Toronto, ON, Canada.
²³ Faculty of Social Work, University of Calgary, Calgary, AB, Canada.
²⁴ Division of Adolescent and Young Adult Medicine, Mass General for Children, Boston, MA, United States.
²⁵ Department of Pediatrics, Harvard Medical School, Boston, MA, United States.
²⁶ North York General Hospital, Toronto, ON, Canada.
²⁷ Toronto General Hospital Research Institute, University Health Network, Toronto, ON, Canada.
²⁸ Lawrence Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada.
²⁹ Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, ON, Canada.
³⁰ Section of Geriatric Medicine, Department of Medicine, Sinai Health, Toronto, ON, Canada.
³¹ Department of Physical Therapy, University of Toronto, Toronto, ON, Canada.
³² Department of Pediatrics, University of Toronto, Toronto, ON, Canada.
³³ ICES, Toronto, ON, Canada.

PMID: 40153797
PMCID: PMC11992488
DOI: 10.2196/65733

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, 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.

Keywords: frameworks; implementation science; qualitative; scoping review; youth and family engagement.

©Sarah E P Munce, Clementine Jarrett, Vjura Senthilnathan, Dorothy Luong, Brooke Allemang, Katherine Bailey, Elaine Biddiss, Maria T Britto, Francine Buchanan, Christine Cassidy, Andrea Cross, Jessie Cunningham, Gina Dimitropoulos, Scott E Hadland, Monika Kastner, Tieghan Killackey, Kristina Kokorelias, Colin Macarthur, Samantha Micsinszki, Chavon Niles, F Virginia Wright, Alene Toulany. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 28.03.2025.

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Conflict of interest statement

Conflicts of Interest: SEPM is the editor-in-chief of JMIR Rehabilitation and Assistive Technologies.

References

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Development of a Framework for Youth- and Family-Specific Engagement in Research: Proposal for a Scoping Review and Qualitative Descriptive Study

Affiliations

Development of a Framework for Youth- and Family-Specific Engagement in Research: Proposal for a Scoping Review and Qualitative Descriptive Study

Authors

Affiliations

Abstract

Conflict of interest statement

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical

Miscellaneous