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Global health
Protocol
Involving adolescents in the design, implementation, evaluation and dissemination of health research: an umbrella review protocol
  1. Azza Warraitch1,2,
  2. Delali Bruce1,3,
  3. Maria Lee1,2,
  4. Paul Curran2,
  5. Qusai Khraisha1,2,
  6. Kristin Hadfield1,2
  1. 1Trinity Centre for Global Health, Trinity College Dublin, Dublin, Ireland
  2. 2School of Psychology, Trinity College Dublin, Dublin, Ireland
  3. 3School of Engineering, Stanford University, Stanford, California, USA
  1. Correspondence to Azza Warraitch; warraita{at}tcd.ie

Abstract

Introduction A lack of awareness on how to engage adolescents in research has been reported as one of the barriers to meaningful youth involvement in health research. Currently, available guidelines on youth involvement are limited in terms of the scope (e.g., focused on limited health research areas), content (e.g., include broad principles) and context (e.g., most guidelines are from high-income countries) for which the guidelines are applicable. To address this, we will develop a set of comprehensive guidelines based on consolidated evidence on youth involvement in health research. To inform these guidelines, we are first conducting an umbrella review to (1) summarise and synthesise findings from reviews on involving adolescents in health research, (2) consolidate the challenges experienced in youth involvement and the recommendations to mitigate these challenges, (3) identify best practices and (4) identify gaps and methodological weaknesses in the extant literature on involving adolescents in health research.

Methods and analysis We will include review articles exploring adolescents’ involvement in studies aiming to improve their physical or mental health. Databases to be searched include Cochrane Database of Systematic Reviews, Medical Literature Analysis and Retrieval System Online (MEDLINE), Scopus, Embase, PsycINFO, PsycArticles, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Epistemonikos and Health Systems Evidence. A grey literature search will be conducted in Web of Science, ProQuest, Google Scholar and PROSPERO, supplemented by a handsearch of the reference lists of eligible reviews, relevant journals, websites of related organisations and input from experts. Data will be analysed using narrative synthesis.

Ethics and dissemination Ethical approval is not required as we are not collecting participant data as part of this review. The findings of this umbrella review will be disseminated through peer-reviewed publications, participatory workshops and academic conferences.

PROSPERO registration number CRD42021287467.

  • PAEDIATRICS
  • Protocols & guidelines
  • Community child health
http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

http://dx.doi.org/10.1136/bmjopen-2022-069695

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    STRENGTHS AND LIMITATIONS OF THIS STUDY

    • This umbrella review consolidates evidence from a highly varied range of reviews on youth involvement in health research, using a rigorous methodology and a comprehensive search strategy.

    • This umbrella review will be conducted with active involvement from adolescents throughout to improve the relevance, quality and dissemination of the findings.

    • Only reviews published in English will be included.

    Introduction

    Adolescents aged 10–24 years comprise 24% of the world’s population.1 In the past two decades, there has been a global shift in attention towards the promotion of adolescent health.2 3 The recent prioritisation of adolescent health in global strategies4 5 is underpinned by a number of factors. First, adolescents experience a considerable proportion of the global population’s disease burden, attributed to different communicable and non-communicable diseases and injuries.6 7 Around 168 million disability-adjusted life-years are lost to adolescents’ mental health and physical health difficulties.6 7 Second, establishing healthy behavioural patterns and minimising exposure to risk factors among adolescents is a strong determinant for future health trajectories and can also improve the health of the next generation.3 6 Third, the substantial improvements in maternal and child health outcomes, which have been achieved in recent decades through considerable global efforts, are at risk without adequate investments in adolescent health.3 6 8 9 Lastly, improvement in adolescent health outcomes promotes their productivity, academic success and future financial stability, and reduces the direct and indirect costs associated with disease burden, resulting in societal and economic benefits.3 6 10–13 For these reasons, adolescence is now widely considered a critical period in which to invest,3 5 9 14 as reflected in the increase in development assistance for adolescent health, from US$109.7 million in 2003 to US$528.5 million in 2015.15

    Heralded by the UN Convention on the Rights of the Child, the involvement of young people in all decisions that affect their lives, including those relating to health and well-being, is now widely acknowledged as their fundamental right.16 17 One method of including youth in such decisions is to engage them in the research process. Health research is an important avenue for informing the design of healthcare services and care provision to young people, as well as health policy. Meaningful involvement of youth in health research is defined as ‘research that is done ‘with’ or ‘by’’ young people, ‘not ‘to’, ‘about’ or ‘for’ them’.18 19 Adolescents can be engaged to define and prioritise research questions, design the research process, ensure the appropriateness of the research methodology for the young population, collect and analyse data, and disseminate the research findings.17 19–24 There are several frameworks to describe the involvement of children and adolescents in research and health services. These include Hart’s ladder of young people’s participation framework,25 Shier’s pathways to participation framework,26 Treseder’s non-linear model of participation,27 Wong’s TYPE Pyramid framework,28 Arunkumar’s rope ladder model29 and the five-dimensional framework for young people’s involvement in health research.19 The frameworks most commonly used to describe and evaluate youth involvement are those proposed by Hart25 and Shier.26

    Hart’s ladder of young people’s participation builds on Arnstein’s ladder of citizen participation for adults.30 This framework refers to eight steps in the ladder of participation: manipulation, decoration, tokenism, assigned but informed, consulted and informed, adult-initiated shared decisions with children, child-initiated and directed and child-initiated shared decisions with adults. Meaningful engagement begins at the fourth step of the ladder and ends with shared decision-making at the highest step.25 Shier proposed an alternative framework that focuses on elements of meaningful involvement. Shier’s ‘pathways to participation’ model proposes five levels of involvement, where on the first level young people are listened to, on the second level they are supported to express their views, on the third level their views are taken into account, on the fourth level they are involved in decision-making processes and on the fifth level they share power and responsibility for decision-making with the researchers.26 The relative simplicity of this model makes it one of the most widely used frameworks for youth involvement.19 31

    In recent years, there has been an increasing emphasis on the meaningful involvement of adolescents in health research, using participatory approaches.17 23 31–36 Three driving factors explain the context of this change around the involvement of adolescents in health research and service delivery.31 The first one is ‘consumer movement’,37 also equated with the term ‘user involvement’, emerging in the 1970s, which focuses on the integration of patients’ views to ensure responsive and acceptable health services.31 38 This approach has assumed a central position in the National Health Service health policy for adults since the late nineties39–41 and now encompasses the involvement of adolescents in the design and delivery of health services and research.22 31 42

    Second, Article 12 of the UN Convention on the Rights of the Child16 emphasised that children and adolescents have a right to contribute to decisions regarding all matters relevant to young people and that their views must be taken into account. Almost all countries have now ratified this convention to achieve health equity by sharing power over decisions about adolescents.6 43 This has led to a change in the perception of adolescents as social actors rather than passive recipients of care and services designed and delivered by adult professionals.31 35 This has also resulted in an unprecedented demand for the representation of adolescents in health-related decision-making, with multiple health and funding organisations strongly advocating for the meaningful involvement of adolescents in health research to achieve the 2030 agenda for Sustainable Development.3 17 19 44–46

    Third, preliminary evidence on the impact of adolescents’ contribution in health research highlights multiple benefits of youth involvement from an operational, developmental and societal perspective,3 6 17 19 22 31 47 48 further strengthening the cause for youth involvement. From an operational perspective, the involvement of adolescents improves research in several ways: (1) it ensures that the research questions reflect the needs and preferences of adolescents,17 19 21 49 (2) enhances the recruitment and retention rates of participants,19 50–54 (3) improves data collection,19 21 55–59 (4) improves data analysis by bringing unique insight of adolescents in translating the responses19 60 61 and (5) facilitates broader and more effective dissemination of the findings.6 19 57 62 Moreover, organisations that work with adolescents report an overall change in the organisation’s culture to be more inclusive.63 From a developmental perspective, several positive outcomes have been reported for adolescents who contribute to research projects, including (1) learning new research skills,19 47 64–69 (2) increased knowledge about health topics,19 47 51 70–72 (3) better health outcomes19 47 71 73 and (4) better academic or career outcomes.6 19 22 64 74–76 At the societal level, the involvement of adolescents has been linked with an increased awareness of different health issues in the community.17 19 63 77–80

    Despite growing recognition of the fundamental rights of adolescents to contribute to research and the potential benefits of involving them in research, Sellars et al17 found that less than 1% of studies on child and adolescent health report involving adolescents as part of advisory groups. While involving young people in health research is on the rise, the overall number of studies that involve youth is still low.19 This underinvolvement of adolescents in health research may be attributed to the challenges or barriers experienced by researchers and adolescents contributing to research projects.17 These challenges include a lack of awareness of the evidence on youth involvement,19 81 a need for extensive training to effectively engage youth in research,17 19 48 57 81–87 limited training resources and a lack of a comprehensive set of guidelines on engaging youth in health research,19 48 81 88 89 inadequate funding to support meaningful youth involvement,83 86 90 difficulties in recruiting and retaining adolescents,86 87 91 complex ethical procedures such as additional consent and assent requirements, and compliance with different safeguarding practices that vary for different contexts.49 57 92 To address some of the highlighted challenges to meaningful youth involvement, we aim to develop a comprehensive set of guidelines for involving youth in health research. While there are several guidelines available on involvement of young people in health research, a recent review highlighted that these guidelines are limited in their scope, contexts and the content that they cover.19 For example, overlooked areas of youth involvement such as involvement in the early and late stages of the research process, working with young people in Low- and Middle- Income Countries, and working with those from disadvantaged groups, are some aspects that need to be emphasised in a set of comprehensive guidelines.81 While subject-specific guidelines, where they exist, may offer more targeted guidance on engaging young people in research on specific health issues, a comprehensive set of guidelines can be of use to a larger target audience of those working with youth in different types of health areas. Furthermore, as most of the principles of youth engagement are transdisciplinary (eg, informed consent, power dynamics, inclusivity), an overall set of guidelines holds the potential to be useful and relevant to a wider audience working on a range of health research areas.

    This umbrella review will inform the development of these guidelines by consolidating the review-level evidence on youth involvement in health research. This umbrella review will be followed by a rapid review to consolidate the recommendations from the existing guidelines on youth engagement in health research. Further details on the guideline development process can be accessed on the Open Science Framework (OSF) page https://osf.io/5z4em/. There are numerous reviews on youth involvement in health research. However, these reviews focus on specific areas of health research (eg, sexual and reproductive health, mental health), certain types of youth involvement approaches (eg, peer-mediated interventions, participatory action research), specific locations (eg, the USA, India) and are heterogeneous in their methods (eg, search different databases, use different age groups) and findings. Furthermore, there is little overlap in the studies that are included in these reviews, highlighting the need to bring together all available evidence on youth involvement in different areas of health research in different contexts and to translate these findings into recommendations. Given the broad scope of the research objectives and the heterogeneity in the extant literature, an umbrella review is a more suitable choice of review than a systematic review of primary studies.93

    Therefore, we aim to conduct an umbrella review to (1) summarise and synthesise findings from reviews on involving adolescents in health research, (2) consolidate the challenges experienced in youth involvement and the recommendations to mitigate these challenges, (3) identify the best practices or recommendations on involving adolescents in health research and (4) identify gaps and methodological weaknesses in the extant literature.

    Methods and analysis

    This umbrella review will be conducted as per the Cochrane guidelines for overviews of reviews.94 However, some elements—types of reviews to be included and the appraisal method, in particular—have been adapted (described below) to suit the objectives of the umbrella review. We followed the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) Protocols guidelines in reporting this protocol (online supplemental file 1). We will report findings in accordance with the PRISMA statement95 given that the PRISMA extension for overviews of reviews (Preferred Reporting Items for Overviews of Reviews) is under development and is thus not available for this umbrella review.96 The umbrella review has been registered with the International Prospective Register of Systematic Reviews (PROSPERO CRD42021287467). The PROSPERO registration was updated to preregister some changes to the methodology described below.

    Search strategy

    The search strategy for this umbrella review includes keywords for: (A) population (adolescents aged 10–24 years),97 (B) intervention or exposure (involvement of adolescents in health research), (C) condition under study (health of adolescents) and (D) review type (including narrative reviews, targeted reviews, rapid reviews, scoping reviews, literature reviews, qualitative reviews, integrated reviews, evidence maps, critical reviews, mixed methods reviews, overviews, state-of-the-art reviews, practitioner reviews, systematic reviews, as well as meta-analyses) using Boolean syntax. Authors AW and KH developed the search strategy in consultation with a research librarian (GF) at Trinity College Dublin.

    A commonly reported problem in studying youth involvement is the inconsistent use of terminologies and a wide range of methodologies classified as youth involvement.19 48 The search strategy is attached in online supplemental file 2.

    Information sources

    Electronic databases

    We will search Cochrane Database of Systematic Reviews, Medical Literature Analysis and Retrieval System Online (MEDLINE), Scopus, Embase, PsycINFO, PsycArticles, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Epistemonikos, and Health Systems Evidence databases for potentially eligible reviews conducted up to 30 November 2021.

    Grey literature search

    The grey literature search involves several components. First, a simplified search strategy—based on different combinations of fewer key search terms—will be used to search Google Scholar for additional reviews. The Google Scholar search will be restricted to the first 10 pages. Second, we will identify the top 10 ranking paediatrics, perinatology and child health journals using the Scimago Journal and Country Rank list for 2020.17 A similar simplified version of the search strategy will be used to search these journals for additional reviews that could be potentially eligible for inclusion. Third, Web of Science and ProQuest will be searched to identify additional conference abstracts, theses, reports and unpublished relevant reviews. The search strategy will be modified to suit the interface of these databases, as required. The search strategy for Web of Science is attached in online supplemental file 3. Fourth, we will search for relevant reviews registered on PROSPERO. Authors of potentially eligible reviews will be contacted to check whether the reviews are close to completion or have been completed. The authors will be requested to share the extracted data for inclusion in the umbrella review for complete or close to completion reviews. The number of contacts made and the number of authors who agreed to share the data will be recorded and reported. Fifth, websites of relevant organisations will also be searched for grey literature. This will involve compiling a list of organisations (including governmental, non-profit and funding organisations) working on adolescents’ health. We will conduct a targeted search of up to 20 pages of Google, the Mental Health Innovation Network (MHIN) database, and including organisations known to the authors. The MHIN is a community of global mental health researchers, health professionals, policy-makers and other relevant stakeholders. MHIN has a database of organisations working to promote health in communities in low-income, middle-income and high-income countries. The MHIN database interface has search options for organisations based on the target population that they work with and the countries. We will use the filter for age range to identify the organisations that work with young people. After identifying the organisations, we will search for relevant documents by running a simplified search strategy, like the one used for searching Google Scholar, on the website homepages of these organisations. The first 10 pages of the results will be searched. Websites without a search option will be handsearched. We will also search Google for youth health organisations in low-income and middle-income countries and search the website of one organisation (top google result) for each country. We will use World Bank’s classification of countries to define low-income and middle-income countries and DAC list of ODA recipients.98 We will only search the website of the organisation that is the top google result for each of the 137 low-income and middle-income countries to ensure at least one organisation from each country is included. Names of all organisational websites searched, and the titles and URL links to eligible materials will be extracted in the Excel spreadsheet for grey literature, which will be posted on the review’s OSF page https://osf.io/cx7y9/. Sixth, we will contact 5–10 experts in youth involvement in health research. They will be regarded as an expert if (A) they oversee youth involvement in health research component at a funding organisation (e.g., Wellcome Trust, Grand Challenges Canada) or youth health organisation and/or (B) have conducted studies which involved adolescents as collaborators at different stages of the research process. We will include experts from high-income, middle-income and low-income countries. After identifying potential experts to be contacted, we will send them an email stating the aims of the umbrella review, eligibility criteria for reviews and a statement requesting that they share the references of any relevant materials they might be familiar with. Seventh, reference lists of all eligible reviews will be reviewed to identify further relevant reviews. Finally, all the eligible reviews will be entered in the connectedpapers software to identify similar papers. This comprehensive strategy aims to identify all published and unpublished reviews on this topic and get the broadest range of views possible for inclusion in the umbrella review. The grey literature search will be conducted by AW.

    Data management

    All references from electronic databases will be exported to Covidence. We will record the search date, the number of results for each database and each combination of the search terms for grey literature search. For the grey literature, titles and URL links to potentially relevant documents will be entered in an Excel spreadsheet.99

    Eligibility criteria

    Study design

    Only review articles will be eligible for inclusion in this umbrella review. Although the Cochrane Overview of reviews guidelines recommend including systematic reviews and meta-analysis, we will include review articles of all types, including narrative reviews, targeted reviews, rapid reviews, scoping reviews, literature reviews, qualitative reviews, integrated reviews, evidence maps, critical reviews, desk reviews, mixed-methods reviews, overviews, state-of-the-art reviews, practitioner reviews, systematic reviews, as well as meta-analyses.100 This adaptation to the guidelines is due to the qualitative nature of the outcomes of interest and to ensure the inclusion of a wide range of literature on youth involvement. This adaptation to the guidelines is common in umbrella reviews focusing on qualitative data and outcomes.101

    Participants

    We will only include reviews that discuss youth-specific results; the age range of participants in studies included in the review can vary, but the target population of the review must include adolescents. Adolescents are young people between the ages of 10–24 years as defined by Sawyer et al.97 All reviews focusing on children and adolescents irrespective of the age range (as long as these include some studies for adolescents aged between 10 and 24 years) will be included, but primary studies where the age range of the target population is below 10 years or above 24 years will be excluded. Reviews and studies where the age range is not mentioned, rather the terms children and adolescents are listed will be included. No other restrictions will be applied based on demographic characteristics or context. Reviews that are overlapping in terms of age range will be included, however, overlap in the primary studies included in reviews will be addressed using the procedure described below in study selection section.

    We are focusing on adolescents aged 10–24 for three reasons: (1) this umbrella review aims to inform the development of a set of comprehensive guidelines on involvement of adolescents aged 10–24 to address the gaps in the currently available guidelines on involvement of adolescents in health research,19 (2) based on their developmental status, the methods used to engage children might be different than the ones used to engage adolescents, therefore, the recommendations for both age groups would vary and (3) logistical considerations including the additional time and resources required to develop recommendations on engaging children younger than 10 years.

    Intervention

    Reviews exploring youth involvement in studies that focus on the promotion of physical and mental health or treatment of physical and mental health difficulties among adolescents will be eligible. We will include reviews focusing on overall youth engagement as long as these include at least one study on youth involvement in health research in accordance with Cochrane guidelines which advise that where a particular review’s research objectives are broader than those of an umbrella review, the umbrella review should only include primary studies from that review that meet the eligibility criteria for the umbrella review.94

    Youth involvement in health research refers to a wide range of methods and strategies used to involve young people in the design, conduct, analysis and dissemination of research on adolescent health. Their involvement can range from consultation where young people are asked for advice and to share their views to inform decision-making,22 to collaboration which is characterised by ‘active, ongoing partnership with young people’22 and youth-led research, which involves ‘putting the locus of power, initiative and subsequent decision-making with young people’.22 This review will focus on all three levels of youth involvement in addition to all approaches to youth involvement.

    Outcomes

    Reviews including one or more of the following outcomes will be eligible for inclusion: (1) strategies that have been used to involve adolescents in conducting health research, (2) recommendations for involving adolescents in health research (best practices), (3) barriers to meaningful youth involvement, (4) mitigation strategies to address these barriers and (5) evidence gaps in youth involvement in health research.

    Other criteria

    Only reviews published in the English language will be considered for inclusion. Reviews where data extraction tables for the primary studies (applicable to systematic, rapid and scoping reviews) are inaccessible will be excluded. As per the Cochrane guidelines for overviews of reviews,94 if a review’s research objectives and scope are broader than the current umbrella review, the subset of primary studies meeting the review’s eligibility criteria will be included in this umbrella review.

    Selection of studies

    Search results will be imported into Covidence for the removal of duplicate references. The eligibility criteria will be discussed among researchers conducting the title and abstract screening to ensure mutual understanding of the criteria. Title and abstract screening of the studies will be undertaken by two postgraduate-level psychology students and an adolescent co-researcher. They will first conduct a pilot screening of 1% of randomly selected search results. Any discrepancies will be discussed and resolved before proceeding with title and abstract screening for the rest of the articles. AW will conduct the title and abstract screening of all articles, while co-researcher (QK) and an adolescent co-researcher will conduct title and abstract screening of 25% of articles to minimise the risk of bias. Where eligibility cannot be determined based on abstract, such articles will be labelled ambiguous and reviewed in full.

    AW will conduct full-text screening and extract data from all eligible articles, while QK and an adolescent co-researcher will conduct full-text screening and data extraction for 10% of articles. Reasons for exclusion will be recorded for all excluded articles at this stage. Any discrepancies or disagreements will be resolved through discussion among these three researchers and, if required, through discussion with a fourth researcher (KH). The screening and study selection process will be reported in a PRISMA flow chart.102

    Overlap in primary studies across multiple reviews can give undue weightage to studies included more than once in the synthesis of findings. It is recommended to address the risk of overlap at the inclusion, data extraction or synthesis stage.103 We will assess the overlap in primary studies at the data extraction and synthesis stage by creating a citation matrix94 104 where the primary studies will be cross-linked with the reviews they are included in. The reviews will be listed in columns, and the primary studies will be added in rows, with a tick mark added under all reviews that include a primary study. The overlap will be quantified by calculating the corrected covered area measure104 that indicates the degree of overlap. The citation matrix will help us ensure that the results of primary studies included in multiple reviews are only included once.103 104 This citation matrix will be posted on the review’s OSF page.

    Data extraction

    Data from the included reviews will be extracted using a data extraction form designed in Covidence. The data extraction form will be piloted by researchers extracting the data, using 1% of eligible full-text articles. Inter-rater reliability between the researchers will be assessed using the kappa statistic for the closed-ended fields of the data extraction form and risk of bias assessment. For open-ended data extraction fields, AW will compare the data extracted by all team members to assess whether a general agreement has been established on the data extraction process. Data on results will be extracted only from the included reviews. Data will be extracted on:

    • Characteristics of eligible reviews including review title, names and contact details of study authors, publication type (e.g., article, conference abstract, report), review type (scoping, narrative, systematic, etc), the age range of study population in the review, the condition under study (e.g., physical health, mental health or specific disease/disorder), aim of the review, definition of youth involvement used, search strategy, databases and grey literature sources searched, search end date, method of synthesis and tool used to appraise the risk of bias for the primary studies.

    • Characteristics of primary studies include their eligibility criteria, the number of primary studies included in the review, the study design of primary studies and the risk of bias results for the primary studies.

    • Findings will consist of the use of different youth involvement strategies, level of youth involvement, challenges or barriers in the use of youth involvement strategies, recommendations to address these barriers, best practices in youth involvement in health research, limitations of the review and gaps identified in the literature.

    Risk of bias assessment

    A MeaSurement Tool to Assess systematic Reviews-2105 will be used to assess the methodological quality of included systematic reviews. The risk of bias assessments conducted for the primary studies in the included reviews will be narratively summarised. AW will conduct the risk of bias assessment of all eligible systematic reviews, while a second reviewer will conduct the risk of bias assessment for 10% of eligible systematic reviews. Any discrepancies or disagreements will be resolved through discussion among these two researchers and, if required, through discussion with a third researcher (KH).

    Narrative synthesis

    A narrative synthesis will be conducted by AW and an adolescent co-researcher to analyse the data. The first step will include familiarisation with the extracted data through close reading, followed by coding the extracted data using deductive coding. Then, the codes will be structured under broader themes. Finally, these themes will be summarised in a descriptive and tabular form, centred around the research aims and objectives. AW and an adolescent co-researcher will analyse a subset of the data together until there is a general agreement on the coding and narrative building.

    Patient and public involvement

    Adolescents will be involved in the title and abstract screening, full-text screening, data extraction, analysis and dissemination phases of this umbrella review. These adolescents will be invited to participate through local non-profit organisations and/or academic institutions. Specifically, the adolescent co-researchers and coauthors DB, ML and PC reviewed the final protocol for the umbrella review and shared their input. An adolescent co-researcher will be recruited to conduct title and abstract screening for 25% of the articles and undertake full-text screening and data extraction for 10% of articles to ensure representation of youth in decision-making processes. Another adolescent co-researcher will contribute to the data analysis by working with AW to develop themes and write up the narrative synthesis. To increase the relevance of the findings, we will seek input from 6 to 8 members of a youth advisory group in two participatory workshops. In the first workshop, young people will be invited to share their interpretation of the results and reflections on the challenges and recommendations highlighted in the literature. In the second workshop, they will contribute by reviewing the outputs of this umbrella review and ensuring the language used is accessible and inclusive. We will also facilitate the young coresearchers and advisors to present the findings to the scientific community via video abstracts and to youth and lay audiences through dissemination methods determined by the youth themselves to ensure more effective and wider dissemination of the results. Adolescent coresearchers will also help us recruit youth advisors for the review. Previous experience of research will not be a criterion for youth coresearchers to be engaged in this project.

    Discussion

    This review will bring together evidence on the most effective ways of involving adolescents in health research, challenges experienced in this process and mitigation strategies, which have been recommended to address or prevent these challenges. These findings will inform the development of guidelines on involving adolescents in health research. The need for a comprehensive set of guidelines and resources on involving adolescents in health research has been highlighted by youth researchers81 and studies.83 106–109 These guidelines will facilitate researchers to collaborate with adolescents more effectively, leading to more meaningful involvement of adolescents in research.

    This umbrella review has a few limitations. The search for eligible reviews will be restricted to the English language. In addition, while the search strategy incorporates a wide range of terms to account for the variation in terminology around youth involvement, there is a possibility that relevant reviews indexed using different terms will not be included. Moreover, umbrella reviews are based on the information presented in the review articles and are, therefore, limited by the quality of extracted data in the included reviews. There is also a possibility of missing relevant data on youth involvement in health research that has not previously been included in reviews. This review only focuses on involvement of adolescents aged 10–24 in health research therefore the findings of the review will not be generalisable to children younger than 10 years. Given the focus on adolescent involvement in health research, any relevant guidance on engaging young people based on research in other disciplines and fields may be excluded. Any deviations to the submitted protocol will be documented as amendments to the PROSPERO registration.

    Ethics and dissemination

    Only reviews will be included in this umbrella review; therefore, ethical approval is not required. The findings of this umbrella review will be disseminated through peer-reviewed publications, participatory workshops and academic conferences.

    Ethics statements

    Patient consent for publication

    Acknowledgments

    We would like to acknowledge all members of the Trinity Centre for Global Health and School of Psychology—especially Drs Sadhbh Byrne, Frédérique Vallieres and Elizabeth Nixon—for their valuable inputs. We would also like to thank Ms Geraldine Fitzgerald, the research librarian at the School of Medicine, Trinity College Dublin, for her feedback and input on the search strategy for this umbrella review. We are very grateful to all the youth advisors and coresearchers who contributed to this project.

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    Supplementary materials

    Footnotes

    • Contributors AW and KH conceptualised and wrote the protocol with valuable inputs from QK. DB, ML and PC will contribute to the screening, data extraction and analysis of this review as young coresearchers. All authors have reviewed and approved the final manuscript.

    • Funding AW received the Ussher Fellowship from Trinity College Dublin to support her PhD research, including this umbrella review. She received a Trinity Research in Social Sciences (TRiSS) Research Fellowship to conduct participatory workshops with youth as part of this umbrella review.

    • Disclaimer The funders did not play any role in design of this review.

    • Competing interests None declared.

    • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

    • Provenance and peer review Not commissioned; externally peer reviewed.

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