Research objective

The proposed scoping review will map out the published and unpublished (grey) literature on pediatric patient and family engagement in clinical care, education, and research. We will address the following research question: what are the commonalities of and distinctions between pediatric patient and family engagement approaches when applied in clinical care, education, and research contexts in pediatric institutions?

Patient engagement strategy

An integrated knowledge translation approach will be adopted in this scoping review, whereby research is co-produced with individuals with lived experience [30]. Guided by the principles of patient-oriented research (POR), including mutual respect, support, inclusiveness, and co-building [1], this scoping review will be conducted in collaboration with a team of patient and family partners to bring the perspectives of those with lived experience to this review. While patient engagement has not traditionally been part of the scoping review methodology, there is a growing interest in and reported benefits of including patient and family perspectives in the conduct of literature reviews [28]. Given the focus of this scoping review, an integrated knowledge translation approach is fitting to ensure the research reflects and responds to the needs, priorities, and experiences of patients and families.

We anticipate recruiting four research partners in total; two adolescents and young adults (aged 15–30) and two family members (e.g., parents, caregivers, siblings, extended family members) with experiences of engagement to act as partners in the conduct of our research. This group size will allow for meaningful and active partnership with a small group of committed individuals from diverse backgrounds in terms of gender, lived experience, and race/ethnicity. Eligibility criteria for patient and family partners will include: i) being a patient or family member of a patient who has received care at a pediatric hospital in Canada, ii) having an interest in sharing their perspectives on pediatric patient and family engagement, and iii) possessing experience being engaged as an advisor or partner in prior research. Partners will be recruited through pre-existing relationships with the research team given the nature of this opportunity and the eligibility criteria. Detailed information letters about the opportunity will be emailed to select individuals with prior experience and/or an expressed commitment to pediatric patient and family engagement by the research team. Those with an interest in learning more will be invited to contact the research team to schedule a virtual interview. Interviews will provide prospective partners with information about the time commitment, potential roles, compensation structure, and to learn about the hopes, strengths, and interests of partners. Prior to onboarding partners, roles will be clearly defined and communicated, partners will have opportunities to inquire about the project, and barriers to participation will be feasibly addressed. Those meeting criteria and who can commit to the project timeline will be formally onboarded. While the research team recognizes the perspectives of four partners cannot represent the broader needs and perspectives of an entire population, efforts will be made to purposefully select individuals with differing lived experiences (e.g., a variety of health conditions), identities (e.g., patients versus family members, genders), and views to provide rich insights into the topic under investigation.

Ethical guidelines for the involvement of adolescent, young adult, and family partners in research are lacking, despite evidence that this is a critical area to explore [31,32]. Research ethics board approval for the involvement of patient and family partners in research is not required at the host institution, given they are not study participants. Further, consent from patient and family partners will not be obtained as they will be members of the research team, hired for their expertise. Their consent for becoming involved in the research process will be implied by their application to the patient and family partner role. Though oversight of the patient and family partners by the research ethics board will not be provided, the research team will employ developmentally appropriate and ethical considerations for involving people with lived experience in research [31]. These will include co-development of brave space guidelines, flexible meeting times, sharing decision-making power within the partnership, using lay language to make materials accessible and developmentally appropriate, offering partners choice in how they contribute to the review, and clear documentation of how partner feedback is being implemented throughout the review. A youth engagement specialist focused on adolescent and young adult engagement in research and clinical care at the host institution will also be available to support the partners and team, should the need arise. In addition, guidelines will be employed to ensure that any personal experiences shared by partners during meetings will be kept confidential and will not be shared outside of meetings without permission [31].

Partnership procedures will be co-developed based on the CIHR patient engagement framework [1]. We anticipate holding virtual meetings with the patient and family partners on a bi-weekly basis during data screening, extraction, and interpretation over a four-month period (May – September 2025). Patient and family partners will be compensated for their time in alignment with CIHR’s Patient Partner Compensation Guidelines [33] for meeting attendance (including preparation) and asynchronous activities. A terms of reference document that we have co-developed with knowledge users on another project [34], which includes values and principles, guidance on defining roles, responsibilities, and opportunities, decision-making processes, and how knowledge users will be recognized for their contributions, will help to guide our partnership activities in the scoping review. Patient and family partners will be invited to contribute their perspectives and additions to this living document to ensure it is reflective of their hopes for involvement. Communication channels will be established with patient and family partners and may include the development of shared drives for housing review materials and/or email threads. Efforts to sustain the engagement of patient and family partners over the four-month period will include mutually agreed upon meeting times, co-developed meeting agendas, options for synchronous and asynchronous participation, and developing roles/responsibilities based on partner preferences.

The patient and family partners will collaborate in the creation of the knowledge generated through this scoping review; as such, dissemination outputs will be co-developed with messages and methods of delivery tailored according to the needs of knowledge users [35,36]. They will assist with developing the data extraction tool, advise on study relevance, review preliminary results, provide their feedback on the interpretation of findings, contribute to manuscript preparation, and participate in knowledge mobilization activities, including co-presentations at conferences and community events. All partners will be included as co-authors on the scoping review results article to reflect their essential contributions. Appropriate training will be provided to patient and family partners by the study team to support their active involvement in the scoping review. Methods of delivery for training will be developed based on the preferences of patient and family partners and may include a variety of options tailored to their needs (e.g., virtual education sessions, using videos, through small group work). Insights and reflections from patient and family partners regarding the scoping review will be obtained through group discussions at bi-monthly virtual meetings. While high-level meeting minutes will be taken to capture team-based decisions about concepts within the review, confidentiality will be discussed during onboarding sessions to introduce partners to this review, and each partner will have autonomy in determining what they would like to share. No identifying information about specific partners’ own experiences will be collected or published in the final review.

Search strategy

A systematic search strategy has been developed with the support of an experienced research librarian at the host institution to identify relevant published literature in electronic databases (e.g., MEDLINE, EMBASE, CINAHL, PsycINFO; S1 Appendix). The search string was established in alignment with study inclusion criteria, guided by the “PCC” mnemonic (population, concept, context) [26] and compared against Medical Subject Headings to ensure relevance (see S1 Appendix). Given our focus on pediatric patient and family engagement, our population of interest for the phenomena under study is pediatric patients (aged 4–18 years based on prior studies [7]) and the age at which transfer out of pediatric care typically occurs [37] and/or family members (e.g., parents, caregivers, siblings, extended family members) carried out within pediatric institutions. Mean age of the patient population will be used, when necessary. The concept to be explored is engagement, including what engagement approaches (e.g., priority setting activities, document reviews, co-design) are described. The context is pediatric institutions or organizations providing clinical care, delivering health education/health promotion activities, or conducting health research/quality improvement initiatives (e.g., hospitals, primary care clinics, research centres, community-based organizations) in any geographic location. We will include quality improvement projects, qualitative, quantitative, and mixed methods studies published in English (for feasibility purposes) between 2011 (when Canada’s Strategy for Patient-Oriented Research was established [38]) and present. Conference abstracts, dissertations, reviews, and protocols will be excluded. Reference lists of relevant articles (including systematic or scoping reviews) will also be searched. To date, we have completed the initial search of the published literature and identified relevant articles but have not yet scanned the reference lists of articles. A targeted search of grey literature will be also conducted by our team to identify frameworks and guidance documents from funding bodies, community organizations, and other institutions relevant to our research question given the importance of these data sources. We will search for grey literature in databases like OpenGrey, Grey Matters, and Grey Literature Report. The grey literature search has not yet been conducted.

Evidence screening and selection

Articles and documents will be imported into Covidence for screening and extraction. Duplicates will be removed prior to level 1 screening. Titles and abstracts will be screened by two independent reviewers based on the research objective and inclusion criteria. Pilot testing at level 1 screening will be conducted to ensure consistency across reviewers. A sample of approximately 50 articles will be reviewed by study team members, including patient and family partners, and inclusion criteria may be adjusted if there is < 70% agreement on decisions to include/exclude articles and documents [39,40]. Level 1 screening of the published literature has been completed.

Next, full-text versions of potentially relevant literature and documents will be reviewed by two independent reviewers and compared against study inclusion criteria. Following a similar process to level 1, pilot testing will be conducted at level 2 on approximately 25% of the articles to assess inter-rater reliability [39,41,42]. Any disagreements that arise in the screening process will be resolved by consensus. Study selection processes, including reasons for exclusion at level 2, will be described and presented in a flow diagram. Level 2 screening was completed in June 2025.

Data extraction

A data extraction tool will be developed in collaboration with our patient and family partners to categorize our findings according to the JBI guidelines [27]. Examples of characteristics to be extracted are as follows: publication year, country of publication, publication type, patient/family partner characteristics (e.g., age, gender, lived experience for which their expertise was sought, sociodemographic information, illness/diagnosis), engagement context (clinical care [including quality improvement], education, research), type of pediatric institution (e.g., hospital, research centre, community organization), engagement approach, level/degree of engagement, roles of patient/family partners (e.g., consultant, advisory council member, co-researcher), stage(s) at which engagement occurred, outcome(s) of engagement (e.g., improved skills, increased recruitment, greater relevance), impact of research results, and training completed (e.g., for patient and family partners, clinicians, or researchers). The tool will be pilot tested with two reviewers on five studies to ensure it captures all relevant data and modified as needed. Data extraction will be completed by a primary reviewer and verified by a second reviewer. Characteristics to be collected may evolve as literature is reviewed and in discussion with our patient and family partners. Any additions/modifications to the data extraction tool will be documented for transparency. We anticipate completing data extraction by September 2025.

Data analysis

Quantitative data will be summarized using percentages, means or medians. Qualitative content analysis [43] will be used to count and compare content from various publication types (e.g., the number of qualitative studies on pediatric patient engagement in research). Content analysis [43] will be used to analyze and present the engagement approaches, roles of patient/family partners, and outcomes according to context (e.g., clinical care, education, research). One team member will code the extracted data, engage in discussions about the findings with the broader team, and review emergent patterns. Preliminary findings will be shared with patient and family partners for feedback, group discussion, and collective interpretation. The findings about engagement within clinical care, education, and research contexts will be jointly reflected on by the team and interpreted in light of our diverse experiences and backgrounds. We will consider the implications of our learnings about commonalities and distinctions between engagement in different settings on possibilities for streamlining engagement approaches at an institutional level. A comprehensive summary will be collaboratively developed with patient and family partners based on the findings and our reflections, evidence gaps will be identified, and priorities for future research will be outlined. We expect that final results will be available in November 2025.

Ethical considerations

Ethical approval will not be required for this scoping review as it does not involve human subjects or primary data collection.

Limitations

The proposed scoping review will be subject to some limitations. It is possible there will be more pediatric patient and family engagement literature focused on certain contexts (e.g., research) over others (e.g., health education), lending to more complete summaries of engagement approaches in these areas. We will use frequency counts and content analysis to outline the number of studies specific to each context and highlight our limitations and future directions when reporting the findings. The articles we report on will likely be disproportionately led by researchers, rather than patients or families, thus may not accurately reflect how patients and families perceive the impact of the engagement practices employed. The involvement of patient and family partners in developing the data extraction tool and interpretating the data will, therefore, be crucial. Our grey literature search will be targeted for feasibility purposes, as it is beyond the project’s scope to replicate the search strategy to the same degree as in the published literature. We recognize this could result in missing potentially relevant materials consistent with our study objectives due to publication bias [46]. Future research could aim to more rigorously examine the grey literature regarding how pediatric patient and family engagement approaches are applied within clinical care, education, and research contexts in the unpublished literature. In addition, capturing the breadth of literature relevant to our objective may prove challenging given the various terms used to describe patient and family engagement (e.g., patient and public involvement, patient engagement, service user involvement). To address this challenge, we have worked with a research librarian experienced with knowledge synthesis methodologies and in the area of patient and family engagement and will collaborate with our patient and family partners to clearly define our inclusion criteria and ensure the search strategy encompasses the range of terminology present in the literature. This review will be limited to articles published in English given a lack of resources for personnel to screen and extract these additional articles. Thus, the data extracted and findings developed through the review may not adequately reflect the experiences of marginalized populations related to engagement. We recognize the importance of examining articles and studies published in languages other than English and will consider this in future funding applications and research endeavours. Lastly, we acknowledge that the involvement of a small group of patient and family partners will not entirely reflect the breadth of perspectives held by adolescents, young adults, and family members regarding pediatric patient and family engagement. However, this scoping review will identify gaps or underrepresented perspectives in the literature and highlight implications for improving diversity in pediatric patient and family engagement.

Strengths

Strengths of this review include the involvement of an interdisciplinary team of researchers, patient partners, and family partners who will bring intersectional and equity-informed perspectives to data extraction, analysis, and interpretation. Several members hold dual identities as researchers and individuals with lived experience, each contributing their knowledge and views to the topic under study. In addition, this team is comprised of those with an array of research experiences, from early career to senior researchers, and with a diversity of experiences in engagement. At least two team members will be involved in level 1 and 2 screening and steps will be taken to ensure inter-rater reliability. Finally, reference lists of relevant articles and existing systematic/scoping reviews will be hand-searched for additional studies that meet inclusion criteria to support a comprehensive search strategy.

Dissemination

We will disseminate the findings of this review by publishing in an open-access peer-reviewed journal and sharing results and implications at conferences, webinars, and relevant community events, including patient and family advisory council meetings at pediatric institutions across Canada. Possible venues for dissemination via co-presentations with patient and family partners include the Ontario Strategy for Patient-Oriented Research SUPPORT Unit Research Day, the Pride in Patient Engagement in Research (PiPER) Research Day, Children’s Healthcare Canada’s Annual Conference, Kids Brain Health Network’s Annual Conference, the Patient-Centered Outcomes Research Institute Annual Meeting, the AcademyHealth Annual Conference on the Science of Dissemination and Implementation, or the International Association for Public Participation North American Conference. We will develop plain language summaries and infographics with patient and family partners to share relevant findings with knowledge users and identify appropriate channels for reaching adolescents, families, and healthcare providers, specifically. We also anticipate incorporating learnings from this review into training programs for staff wishing to engage patients and families at the host institution.