A practical toolbox for teams looking to work with young people in research
This toolbox offers a compilation of resources designed to support teams wishing to integrate young people into their research projects.
Aim
Organized by theme, it explores different aspects of youth involvement, from ethics to tools for facilitating interactions, via concrete examples and methodological ideas.
The aim is to facilitate youth involvement by providing tools, examples and best practices adapted to research environments.
Selection criteria
The inclusion criteria are:
- Resources on youth involvement in research
The exclusion criteria are:
- Resources on general or adult engagement
- Involvement in clinical trials as patients or research subjects
Suggestions
Although not exhaustive, this selection of tools offers some concrete starting points for initiating and structuring an engagement process.
If you know of a relevant tool that could enrich this toolbox, please don’t hesitate to contact us!
Getting started
These resources can serve as a starting point for those looking to engage young people in research. They’re an effective way to start thinking about the topic and to learn a few key principles.
10 Tips for Engaging Young People in Research
Key considerations for research teams collaborating with young patient-partners and/or their siblings. Developed by the CHILD-BRIGHT’s National Youth Advisory Panel (NYAP) in collaboration with the CanChild’s Sibling Youth Advisory Council (SibYAC).
Canada
Guidelines for Research with Children and Young People
These guidelines, developed by the National Children’s Bureau Research Office, offer a practical approach for fostering young people’s participation at every stage of the research process. Check out Section 4 on engaging young people in a more active and collaborative role, beyond being study subjects.
England and Northern Ireland
Handbook for Children’s Participation in Research
This handbook presents reflections and considerations on the social and structural factors surrounding childhood. Its goal is to help researchers meaningfully include children throughout the research process.
Involving children and young people as advisors in research
Concrete suggestions for actively including children and adolescents in health research, emphasizing the importance of meaningful collaboration, considering young people as equal partners. You will discover 17 recommendations to facilitate their participation, 13 of which were co-developed with youth advisory groups (YPAG) and members of INVOLVE Children and Young People’s Working Group.
United Kingdom
So You Want to Involve Children in Research?
This toolbox features studies of effective participatory research from around the world. It encourages research that sees children as active agents in their own lives, rather than passive victims or research subjects.
International
Understanding research with children and young people
This free online course offers an introduction to research with and by children and young people. It is aimed at people who want to become familiar with this field, whether they are professionals or young people who want to set up their own project. The module emphasizes the importance of including young people in research that concerns them, exploring the principles of collaborative research and building on the rights set out in the United Nations Convention on the Rights of the Child (UNCRC). It also proposes a framework for thinking about, designing and launching a research project involving young people.
United Kingdom
INNOVATE Research: Youth Engagement Guidebook for Researchers
This guide, co-constructed by young people and researchers, offers basic information on youth involvement, concrete recommendations, practical examples and worksheets to guide implementation.
Youth Engagement Research Framework
This guide, co-constructed by young people and researchers, offers guidelines for meaningfully including young people as advisors or co-investigators in health and social science research projects. The young people explain how scientists can design a research framework that is culturally inclusive, how to get them to contribute meaningfully to research, what criteria need to be met throughout the research process, and what they hope to gain from their experience.
Canada
Youth Participation and Engagement
Developed in collaboration with the Youth Advisory and the Youth Research Council of Orygen, this guide helps to understand the principles of youth participation. It also suggests practical approaches to including them as full partners in research projects.
Australia
Involving Children and Young People in Research
This webpage offers a series of guides, films, articles and toolkits to help researchers effectively engage young people through various stages of research. Resources include educational tutorials, functional tools, as well as ethical guidelines on remuneration and contribution of young people.
United Kingdom
Reflections on Methodology and Ethics
Tools and reflections on the methodological and ethical frameworks to consider when involving young people in a research project. In particular, it addresses issues of power, consent and co-construction.
Child-centered research. Ethical challenges and methodological innovations (in French)
This book aims to raise awareness around practical and ethical issues involved in research with children. It draws on concrete examples from research carried out in different contexts.
Isabel Côté, Kévin Lavoie, Renée-Pier Trottier-Cyr
Canada
Ethical and Methodological Issues in Research with Children (in French)
Presentation highlighting the main ethical and methodological challenges of research with children, and strategies for overcoming them.
Nolwenn Chesnais
Canada
Compensations and subsidies
Resources for funding young people’s participation: remuneration of young co-researchers, recognition of their contribution, and specific funding opportunities.
CHILD-BRIGHT’s Guidelines for Patient-Partner Compensation and Recognition
This guide sets out the principles governing the remuneration of partners with lived experience (PWLEs) for their contribution to research, governance and other network activities. Experienced partners include young partners and former pediatric patients living with a brain-based developmental disorder, as well as parents, caregivers and family members.
Canada
ACCESS Persons With Lived Experience Subsidy Application
ACCESS (Advancing Childhood Cancer Experience, Science & Survivorship) offers financial support to Persons With Lived Experience (PWLE). This grant helps cover the costs of participation in workshops, seminars, one-off courses, meetings and conferences. To be eligible, activities must provide opportunities for learning and education about pediatric cancer.
Canada
Case Studies
Concrete examples of projects or initiatives that have significantly involved young people. A source of inspiration for discovering previous projects, the methods used and the contexts in which they were carried out.
Youth Excel: Our Knowledge, Leading Change
A program that supports youth and youth-led organizations to use implementation research to advance evidence-based policies and programs.
United States
Youth committee – EDJeP (in French)
The EDJeP youth committee is composed of young adults who have lived through a placement experience and wish to contribute to the improvement of services for those who will leave the youth centers. They are actively involved in the EDJeP (Longitudinal study on the future of youth in care in Québec and France) research project, co-constructing questionnaires, validating data collection tools and formulating recommendations to strengthen young people’s participation in the research process.
Youth Participation in Research
This video traces the development of the Orygen toolkit, a project carried out in collaboration with two youth committees. It highlights how young people were actively involved at every stage of the process, as well as the lessons learned from this participatory approach.
Australia
Youth Participation in Research and Leaving a Data Legacy
In this podcast hosted by a young co-researcher, three young adults talk about youth involvement in research. The episode discusses the benefits of this involvement, the impact of community participation in research projects, and the issues involved in disseminating and leaving a data legacy. It also offers a perspective on what it’s like for young people to become co-researchers.
Canada
Engaging Youth and Families: A Practical Discussion with the CHILD-BRIGHT Network
This episode of the asPERusual podcast features an in-depth discussion of youth and family engagement in health research. Guests share concrete strategies, challenges and lessons learned to foster meaningful participation of youth and families at all stages of the research process.
Canada
Paediatric Hospital Care Priority Setting Partnership
This report presents the results of a collaboration between the Pediatric Inpatient Research Network (PIRN) in association with the James Lind Alliance (JLA). The objective was to identify the top 10 unresolved research priorities for pediatric inpatient care in Canada, incorporating the perspectives of youth, parents/guardians and healthcare professionals.
Ressources RCPCH &Us
The Royal College of Paediatrics and Child Health, a charity, offers resources created by and for children, young people and their families. These resources offer excellent examples of tools designed to facilitate their involvement in improving paediatric healthcare in the UK and around the world.
United Kingdom
Youth Engagement in Research
This research on involving young people in research aims to create educational resources for and with young people with neurodevelopmental disorders, with the aim of increasing their knowledge, skills and confidence to get involved as research partners. These videos, co-created with young people, illustrate what they have learned from this collaborative approach.
Canada
Engaging Northern Youth
This report, written by students from the Hotıì ts’eeda Summer School, presents key findings to help health researchers and health system stakeholders better communicate with Aboriginal youth in the Northwest Territories. In 2018, students conducted field research to discover the best ways to engage youth in research projects. The document highlights the importance of authentic relationships, transparency and youth leadership in research projects.
Canada
Youth Committees
Some examples of youth committees, along with suggestions for setting up, managing and supporting this type of group in various research environments. These committees act as advisors to researchers at all stages of the research process.
Young Persons’ Advisory Group
The KidsCan Youth Advisory Group (YPAG) is a developing initiative aimed at creating a national youth network to increase the involvement of young pediatric patients in all stages of the research process. This initiative builds on a pilot project in Vancouver, which evaluated and demonstrated the usefulness of such a group. The aim is to provide Canadian researchers with a consultation service to include young people’s perspectives in the drafting of research documents, ethical consent forms, patient-centered protocols and the definition of outcome measures.
International Children’s Advisory Network
iCAN is a global non-profit network of young people aged 8 to 18, with and without medical conditions. The network provides a forum for them to speak out to decision-makers, corporations and government agencies who can influence pediatric healthcare. iCAN organizes annual summits, discussion groups, art projects and speaking opportunities to foster meaningful youth involvement in pediatric healthcare and research.
International / United States
The European Young Persons Advisory Group Network (eYPAGnet)
This toolkit helps set up and run a Youth Advisory Group (YPAG) involved in pediatric research. It offers practical advice to facilitate the start-up, facilitation and evaluation of young people’s involvement, with an emphasis on recognizing their contribution and adapting content to their level. Structured in four sections, it encourages meaningful participation of young people in research projects.
Additional Engagement Tools
This collection brings together tools that can be applied in different contexts, not limited to research or young people, and proposes inspiring approaches to fostering the engagement of people with lived experience. These resources can provide food for thought and be used to fine-tune youth engagement methods.
The Youth Engagement Toolkit
This assessment tool is designed to help organizations evaluate their youth engagement practices. Through five key areas, including collaboration between young people and adults, shared decision-making and diversity, it proposes indicators and reflections to identify strengths, challenges and areas for improvement.
Learning Together : Evaluation framework for Patient and Public Engagement (PPE) in research
This national and adaptable evaluation framework can be used as a guide to plan and evaluate the engagement process before, during and at the end of a research project. It is based on seven guiding principles of patient engagement defined by the patient-centered research community: relationship, co-construction, equity, diversity and inclusion, support and barrier removal, transparency, sustainability and transformation.
Public and Patient Engagement Evaluation Tool (PPEET)
PPEET is a set of tools designed to assess public and patient engagement through three separate questionnaires: one for the organization, one for the participants and one for the project. The tool is available in several languages, including English, French, Dutch, German, Italian and Norwegian.
Canada
GUIDE | Meaningfully Engaging Youth in Your Community
This guide, developed in collaboration with young leaders and representatives of youth organizations, presents principles and methods for involving young people in community projects. It covers themes such as co-construction, inclusion, recognizing young people as full partners, and managing common challenges.
Canada
Understanding Research
This online platform is an educational resource designed to demystify the basic concepts of health research (research literacy). Materials include video tutorials, a glossary of research terms and a how-to guide for reading scientific articles. The main topics covered on the site include introductions to health research, research ethics, literature review, research methodologies, and knowledge translation. This site has been developed with and for patient partners.
Canada
Publications
This section presents a selection of scientific publications dealing with the involvement of young people in research. These articles provide theoretical frameworks, research results or reflections on practice, and can serve as resources for those interested in this subject.
Adolescent and young adult patients as co-researchers: A scoping review
Fløtten KJØ, Guerreiro AIF, Simonelli I, Solevåg AL, Aujoulat I. Adolescent and young adult patients as co-researchers: A scoping review. Health Expect. 2021 Aug;24(4):1044-1055. doi: 10.1111/hex.13266. Epub 2021 May 15. Erratum in: Health Expect. 2023 Apr;26(2):940. doi: 10.1111/hex.13695. PMID: 33991369; PMCID: PMC8369088.
Engaging youth in research planning, design and execution: Practical recommendations for researchers
Hawke LD, Relihan J, Miller J, McCann E, Rong J, Darnay K, Docherty S, Chaim G, Henderson JL. Engaging youth in research planning, design and execution: Practical recommendations for researchers. Health Expect. 2018 Dec;21(6):944-949. doi: 10.1111/hex.12795. Epub 2018 Jun 1. PMID: 29858526; PMCID: PMC6250868.
Reporting involvement activities with children and young people in paediatric research: a framework analysis
Preston, J., Biglino, G., Harbottle, V. et al. Reporting involvement activities with children and young people in paediatric research: a framework analysis. Res Involv Engagem 9, 61 (2023). https://doi.org/10.1186/s40900-023-00477-8
INNOVATE Research: Impact of a workshop to develop researcher capacity to engage youth in research
Hawke LD, Darnay K, Brown M, Iyer S, Ben-David S, Khaleghi-Moghaddam M, Relihan J, Barbic S, Lachance L, Mathias S, Halsall T, Kidd SA, Soklaridis S, Henderson J. INNOVATE Research: Impact of a workshop to develop researcher capacity to engage youth in research. Health Expect. 2020 Dec;23(6):1441-1449. doi: 10.1111/hex.13123. Epub 2020 Sep 9. PMID: 32902068; PMCID: PMC7752193.
Barriers and enablers to meaningful youth participation in mental health research: qualitative interviews with youth mental health researchers
Faithfull, S., Brophy, L., Pennell, K., & Simmons, M. B. (2018). Barriers and enablers to meaningful youth participation in mental health research: qualitative interviews with youth mental health researchers. Journal of Mental Health, 28(1), 56–63. https://doi.org/10.1080/09638237.2018.1521926
