Health Expectations 2022 McCabe Youth Engagement in Mental Health Research A Systematic Review

Received: 29 July 2022 | Revised: 21 October 2022 | Accepted: 22 October 2022
DOI: 10.1111/hex.13650
REVIEW ARTICLE
Youth engagement in mental health research: A systematic

review
Erin McCabe PhD, MScPT, Post‐doctoral Fellow1 |

Mungunzul (Megan) Amarbayan MPP, Research Assistant2 |
Sarah Rabi BSc, Masters Student | Justino Mendoza BSc, Youth Researcher4
3
|
Syeda Farwa Naqvi BCr, Masters Student3 |
Kalpana Thapa Bajgain BSc, Masters Student3 |
Jennifer D. Zwicker PhD, Associate Professor5 | Maria Santana PhD, Associate Professor6
1
Department of Pediatrics, School of Public
Policy, University of Calgary, Calgary, Alberta, Abstract
Canada
Introduction: Patient engagement in youth mental health research has the potential
2
Department of Medicine, School of Public
Policy, University of Calgary, Calgary, Alberta,
to inform research on the interventions, services and policies that will benefit youth.
Canada At present, there is little evidence to guide mental health researchers on youth
3
Department of Community Health Sciences, engagement. This systematic review aims to describe the impacts of youth
University of Calgary, Calgary, Alberta,
Canada engagement on mental health research and to summarize youth engagement in
4
Department of Biology, Faculty of Science mental health research.
and Technology, Mount Royal University, Methods: We searched the following databases: MEDLINE, EMBASE and PsycINFO,
Calgary, Alberta, Canada
5
using a combination of subject headings, keywords and synonyms for the concepts
Department of Social Policy and Health,
School of Public Policy, University of Calgary, ‘patient engagement’, ‘youth’ and ‘mental health’. Articles that described engaging
Calgary, Alberta, Canada
youth in mental health research were included. Two reviewers performed the study
6
Department of Pediatrics, Community Health
selection. Study characteristics, research activities performed by youth, impacts of
Sciences, University of Calgary, Calgary,
Alberta, Canada youth engagement, challenges, and facilitators to engagement and recommendations
for youth engagement described by authors were extracted. Quality appraisal
Correspondence
Erin McCabe, PhD, MScPT, Department of involved determining the level of engagement of youth and the stage(s) of research
Pediatrics, School of Public Policy, University where youth were involved.
of Calgary, Calgary, AB, Canada.
Email: [email protected] Results: The database search returned 2836 citations, 151 full‐text articles were
screened and 16 articles, representing 14 studies, were selected for inclusion. Youth
Funding information
were involved at nearly all stages of the research cycle, in either advisory or co‐
Kids Brain Health Network; Canadian
Institutes for Health Research, production roles. Youth engagement impacts included enhancing relevant research
Grant/Award Number: Tier II Canada
findings, data collection and analysis and dissemination to academic and stakeholder
Research Chair in Disability Policy; Alberta
Children's Hospital Research Institute audiences. Both youth and academic researchers reported personal development
across many domains. One negative impact reported was the increase in funding and
resources needed for engagement. We produced a list of 35 recommendations
This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium,
provided the original work is properly cited.
© 2022 The Authors. Health Expectations published by John Wiley & Sons Ltd.
30 | wileyonlinelibrary.com/journal/hex Health Expectations. 2023;26:30–50.

13697625, 2023, 1, Downloaded from https://onlinelibrary.wiley.com/doi/10.1111/hex.13650 by Cochrane Philippines, Wiley Online Library on [08/05/2023]. See the Terms and Conditions (https://onlinelibrary.wiley.com/terms-and-conditions) on Wiley Online Library for rules of use; OA articles are governed by the applicable Creative Commons License
McCABE ET AL. | 31
under the headings of training, youth researcher composition, strategy, expectations,

relationships, meeting approaches and engagement conditions.
Conclusions: This study provides an understanding of the impacts and recommen-
dations of youth engagement in mental health research. The findings from this study
may encourage researchers to engage youth in their mental health research and
support youth engagement in funding applications.
Patient and Public Contribution: We consulted three youths with experience being
engaged in mental health research about the review findings and the discussion. One
youth designed a visual representation of the results and provided feedback on the
manuscript. All youth's input informed the way the findings were presented and the
focus of the discussion.
KEYWORDS
co‐design, community‐based research, mental health, mental health services, patient and public
involvement, patient engagement, youth engagement
1 | INTRODUCTION institutions. The arguments for patient engagement are philosophical

(i.e., patients have a right to shape research about their condition),
Mental health conditions affect 1.2 million children and youth in pragmatic (patient input improves the research process and relevancy
Canada and this number is increasing.1 Five percent of Canadian of outputs) and practical (i.e., increased transparency and account-
children aged 5–17 years old report anxiety disorders and 2.1% ability for research that is produced by public funds).10
reported a mood disorder in 2019.2 This aligns with the findings of a While patient engagement in adult health research is becoming
systematic review reporting on the prevalence of these disorders in well‐established, the momentum for youth patient engagement
high‐income countries (5.2% anxiety, 1.8% depressive disorder, (herein, youth engagement) appears to be lagging (Mawn, 2015).11
3
12.7% any mental health disorder). Of the 12.7% of children This may be due to system‐level considerations for youth engage-
experiencing a mental health condition, only 44.2% received any ment, such as institutional research ethic board approval, issues of
services, revealing a large gap in services for children and youth consent in youth and a lack of institutional support.12–14 It may also
3
mental health. Emergency department visits for paediatric mental be due to practical issues such as researchers not feeling competent
health concerns have increased 61% from 2009 to 2019,4 which are with youth‐friendly engagement methods, difficulties reaching youth
often the result of a lack of availability of timely appointments in the for recruitment and funding issues.12 Also, the changing interests and
5
community. It seems that current mental health services are not developmental needs of youth may make it difficult to sustain
meeting the needs of children and youth, suggesting an urgent need engagement partnerships over the entire duration of a research
to transform mental health services so that effective, accessible project.15 Recruiting youth for mental health research may have
services are being provided.3,6 As mental health services undergo a additional challenges, as youth may have experienced stigma related
redesign, new innovative ways of implementing and delivering mental to mental health in their community or within healthcare settings
health care are being studied. It is important to involve youth in that which may create issues of trust between youth and health
research to ensure that practices, services, programmes and policies researchers, leading to youth being reluctant to engage (Knaak,
are appropriate, accessible and meet their needs.7 Using patient 2017).16 Youth may also be hesitant to disclose their mental health
engagement in research is one approach to ensuring the youth condition or may be concerned that their condition may become
perspective is integrated into mental health research and innovation. known to their peers as a consequence of their involvement in
The Canadian Institute for Health Research (CIHR) defines research. Furthermore, researchers may perceive youth with mental
‘patient engagement’ as the meaningful and active collaboration of health conditions as vulnerable, and that research engagement
individuals with personal experience of a health issue and their activity may affect their well‐being.14
informal caregivers (including family and friends) in governance, Despite these potential barriers, youth engagement is considered
priority setting, conducting research and knowledge translation a guiding principle in recent efforts to redesign youth mental health
activities.8 Patient engagement is a close equivalent of the United services.17 Youth engagement allows researchers to gain important
9
Kingdom's concept of Patient and Public Involvement. There is a insights into why youth may not be accessing mental health services,
growing acceptance of patient engagement as being essential in create relevant and responsive interventions and create the condi-
health research on the part of researchers, funders and research tions that make services accessible to young people.18 Youth
32 | McCABE ET AL.
engagement is also a way of recognizing youths' rights for agency and approaches, which are not always included in definitions of ‘patient
power in shaping mental health services that are for them.19 Learning engagement’, but were included here because they engage people
about the benefits, successes, challenges and recommendations of who bring the collective voice of specific, affected communities to
researchers with experience with youth engagement in mental health health research.8 We limited the search to 2000 to the present since
research could help inspire researchers to engage youth in their own patient engagement is a relatively new phenomenon in health
mental health research. Furthermore, an understanding of the research. The ‘mental health research’ concept included mental
impacts of youth engagement could support mental health funding health, mental health services, as well as clinical diagnostic terms
applications where youth are engaged as research partners. adapted from the Cochrane Common Mental Disorders Group with
To date, the impacts of youth engagement on mental health input from a pediatric psychiatrist. Duplicate citations were removed
research and the researchers have not been described. As well, while using automated software and manually by reviewers. Our search
some recommendations exist about engaging youth in health strategy is available online as Supporting Information: File 1.
research, there is little guidance for researchers about youth
engagement specific to mental health research. Therefore, the
primary purpose of this systematic review was to synthesize the 2.3 | Selection
impacts of youth engagement in mental health research. A secondary
aim was to describe the challenges and facilitators encountered in 2.3.1 | Inclusion and exclusion criteria
mental health studies with youth engagement and to summarize the
recommendations for youth engagement in mental health research We included original research studies where youth were engaged as
made by authors. partners in the research process. We wanted to capture the
variations in the approaches to including youth in mental health
research, therefore we included a broad age range of youth
2 | M E TH O D S researchers (8–25 years). To acknowledge that youth may be part
of a research team over several years, we included articles where the
2.1 | Study design majority of youth researchers were 25 years or younger. The age of
the youth was assessed using the age at which the youth joined the
This systematic review follows the meta‐aggregative approach to team (where this information was available). Youth researchers could
qualitative synthesis outlined in the JBI Manual for Evidence have lived experience with a mental health condition or not. All study
Synthesis.20 JBI meta‐aggregative approach seeks to enable general- contexts were included (i.e., mental health clinical research, mental
izable statements to guide practitioners and policymakers. It focuses health services research, community‐based participatory research or
on producing a synthesis of findings that authentically represent the health promotion/public health research) and any setting (i.e.,
aggregation of data from primary studies, rather than a more inpatient, outpatient, community, schools, residential treatment).
interpretive approach where authors re‐interpret findings from We included studies conducted in countries with publicly funded
qualitative studies. The protocol for this review was registered with health systems. The study must have described at minimum, one
PROSPERO (CRD42022319240). We used the preferred reporting youth research activity and one impact of youth engagement.
items for systematic review and meta‐analysis (PRISMA) guidelines to We excluded articles that were not peer‐reviewed (e.g.,
report this review.21 In this review, we distinguish youth co‐ commentaries, theses), those studying youth engagement in a
researchers from academic researchers by using the terms ‘youth programme of research (rather than a specific research project) and
researcher’ and ‘adult researcher’, respectively. We use the term ‘co‐ those where youth were engaged only in the stage of developing an
production’ when referring to activities where youth are collaborating intervention (e.g., mental health technology or clinical pathway) but
with adults or leading the activity, for example, developing recruit- not in research or evaluation of that intervention.
ment materials. We use the term ‘advise’ to mean that youth Two reviewers (E. M. and M. A.) screened citations on the title
researchers provided ideas and feedback on aspects of the project and abstract. The same reviewers reviewed the full text of the
but were not directly involved in those activities. Three youths with articles, comparing them against the inclusion criteria. At both stages,
experience engaging in youth mental health research were involved discrepancies between reviewers were resolved through discussion.
in this project. Inter‐rater reliability was calculated using percent agreement and
Cohen's κ. Covidence was used to manage the study selection
process.
2.2 | Search
We searched MEDLINE, EMBASE and PsycINFO, using a combina- 2.4 | Quality appraisal
tion of subject headings, keywords and synonyms for the concepts
‘patient engagement’, ‘youth’ and ‘mental health research’. The The focus of this review is on youth engagement within the
‘patient engagement’ concept included participatory action research research studies, and not the specific findings of each study. We
McCABE ET AL. | 33
felt that assessing the methodological quality of the studies threefold: to understand whether the way we presented the findings
themselves would be less meaningful than assessing the quality aligned with their experiences as youth engaged in research if they
of engagement. However, to our knowledge, there are no quality had additional recommendations for youth engagement and which of
assessment tools available to assess youth engagement as the findings were most salient to youth engaged in research. The
reported in a research article. Therefore, rather than an assess- feedback from the consultation informed how we presented the
ment of quality, we described youth engagement on two study's results and structured the discussion.
dimensions: level of youth engagement, and stages of the research
cycle where youth were involved. The description of the level of
youth engagement is based on the ‘Types of youth participation’ in 3 | RESULTS
INNOVATE Research: Youth Engagement Guidebook for Researchers
(2019). These are Participation (i.e., youth are the subject of study), 3.1 | Search and selection
Consultation (i.e., youth provide feedback on research), Partnership
(i.e., youth work collaboratively with researchers as equals) and Figure 1 summarizes the search and selection process. The search
Youth‐led (where every stage of research is driven by youth). Key retrieved 2838 citations. We removed 672 duplicates and 2166
stages in the research lifecycle are (1) Priority setting and planning; citations were screened on the title and abstract. The percent
(2) Development of the research proposal; (3) Scientific review; (4) agreement between authors was 88.4% (Cohen's κ = 0.52). The full‐
Ethics review; (5) Oversight of a research project; (5) Recruitment text articles for 148 citations were reviewed, and 132 were excluded,
of research participants (for some types of research); (6) Data primarily because they were describing co‐design of an intervention
collection; (7) Data analysis and interpretation; (8) Knowledge or clinical service (43 articles), or youth were participants in the study
exchange; (9) Evaluation and quality assurance.22 One reviewer rather than involved as researchers (34 articles). Sixteen articles were
(E. M.) categorized each study on these two dimensions, with a included. The percent agreement between authors was 93.6%
second reviewer verifying the descriptions (K. T. B.). (Cohen's κ = 0.45). Two pairs of articles described the same study,
therefore, a total of 14 studies were analysed.
2.5 | Data extraction and synthesis

3.2 | Description of studies
Data extracted included study characteristics, characteristics of
youth researchers, research activities of youth, as well as the findings Table 1 contains the key characteristics of the articles. The articles
of the study that related to youth engagement. We extracted findings were published in four countries: Canada (n = 6), the United Kingdom
about youth engagement for each of the following features: impacts (n = 8), Australia (n = 1) and Norway (n = 1). None of the articles were
of youth engagement on the research process and researchers, the published before 2014 and most were published between 2020 and
facilitators and challenges to youth engagement and author 2022 (n = 11). In nine articles, a description of youth engagement was
recommendations for youth engagement. We used line‐by‐line embedded within the report on the research project, while seven
extraction, from any location in the article, including methods, articles reported directly on the youth engagement aspects of a
results, discussion and conclusions. Data extraction was performed research project.
by a single researcher (E. M.), with a second researcher cross‐ The majority of studies engaged youth 16+ years old, with only
checking the extracted data (K. T. B.). Discrepancies were resolved one study engaging children 9–10 years old. Studies were on mental
through discussion. health services (n = 7), clinical research (n = 4) and public health
The findings for each feature were reviewed and descriptively (n = 3). Studies engaged between 2 and 115 youth. The studies with
coded. Codes were grouped by similarity in concept by a single higher numbers of youth (n > 30) were priority‐setting and
reviewer and then combined into categories. One researcher (E. M.) brainstorming‐type engagement activities. Five studies reported on
created category descriptions, which were reviewed by one member the racial/ethnic diversity of the youth researchers, while seven
of the research team (S. R.) and three youth researchers who were reported on the sex or gender of engaged youth. A focus on diversity
consulted. and inclusion within the research team was present in five studies.
Most studies engaged youth with lived experience of mental health
conditions (12/14). Five studies used advisory meetings as their only
2.6 | Youth engagement in this review approach to engagement, while two studies engaged youth in specific
research activities without conducting formal advisory meetings. Six
We held a consulting meeting with three youths (ages 19–24, all studies used a combination of both advisory meetings and youth
identify as cis men, all Canadian citizens, one with Chinese and one researchers engaging in specific research activities. A variety of
with Southeast Asian heritage), all with previous experience engaging models of youth engagement were used (see Table 1). Structured
in mental health research. The aims of the consultation were research training was provided to youth in five studies.
34 | McCABE ET AL.
FIGURE 1 PRISMA diagram for article search and selection process
3.3 | Youth engagement to increase the diversity of the youth perspectives that influenced the
research project. Table 3 contains the results of the quality appraisal,
The activities of youth researchers are described in Table 1. Youth that is, the level of engagement of each study, and the stages of
were engaged as advisors and/or actively carried out specific research where youth were involved. Seven studies involved youth in
research activities, in some cases leading the activities. Table 2 almost all stages of research.23,27–29,32–34,36,37 All studies involved
contains a summary of youth researcher activities, divided by youth in some form of quality assurance or evaluation of the research
whether the activity was done in a co‐production or advisory role. project, with five studies specifically involving youth in evaluating the
In four studies, the youth performed an advisory role only. The most engagement aspect of the project.
common research activities were focusing on the research topic
(n = 7), co‐analysis of qualitative data (n = 7) and dissemination of
findings (n = 10). 3.5 | Impacts of youth engagement
No studies reported a formal impact assessment of youth engage-

3.4 | Quality appraisal ment, although four studies explored the impacts and experiences of
youth engagement in research.15,28,36,37 Table 4 contains a list of the
Youth were engaged at a ‘consultation’ level in five studies, a impacts of youth engagement.
‘partnership’ level in eight studies and one study was ‘youth‐led’. In The most common research process impacts of youth engage-
three studies at the partnership level, a hybrid model was used where ment reported by authors were (1) the data (n = 9), either by shaping
they had a small number of youth researchers were involved in the data collection instrument or being actively involved in data
research activities and a larger advisory committee of youth was collection; (2) the findings from the study (n = 9), by youth
consulted at key stages in the research process. This model was used involvement in the analysis; (3) enhanced knowledge dissemination
TABLE 1 Characteristics of articles included in the analysis
McCABE
Mental
health
ET AL.
Study Sample age research Study

ID Year Country Sample characteristics range Sample size area designs Methods Study setting
23 2020 United Children from a school in 5‐10 17 in focus groups, Public health Multiple Focus groups and School in North‐West
Kingdom North West England years old entire school research methods observation of England
for playtime play, participatory
observations thematic analysis
24 2020 Canada Varied in sex and gender, 16‐25 approximately 24 Health Priority‐ Research priority Community MH
education, services setting setting services, Hospital
socioeconomic status, research MH services
literacy, and mental
health care experiences
25 2020 Canada Adolescents using child and 16‐19 21 Health Qualitative Qualitative interviews Child and adolescent
adolescent mental services study mental health
health services close to research services in Ontario
transition and 1 year
post transition
26 2021 Canada Youth who accessed youth 19‐25 20 youth, 17 Health Priority‐ Delphi study with Child and adolescent
CAMHS, caregivers of caregivers, 21 services setting qualitative analysis mental health
youth accessing CAMHS, clinicians and research of comments services in Ontario
and clinicians/ administrators
administrators
27 2019 United Youth with severe mental 18‐25 16 Clinical Qualitative Qualitative interviews Patients under the
Kingdom illness, 81% female years old research study care of a
community mental
health team
28 2020 United Youth and adult researchers NR NR Clinical Descriptive Researcher reflections Community mental
Kingdom involved in a mental research study health services
health research study
with youth engagement
29 2021 Australia Youth living in Youth 17‐25 18 Clinical Qualitative Qualitative interviews Youth Residential
Residential research study and focus groups Rehabilitation
Rehabilitation Services Services
30 2017 United NA NA NA Clinical Systematic Systematic review Inpatient mental

Kingdom research review health services
31 2014 United Mixed ethnicity, genders, 16‐25 65 Health Participatory Quality standard Community MH
Kingdom employment/ services qualita- development services, primary
education/unemployed research tive study through focus care, hostel, drop
|
group and nominal in service

group technique
35
(Continues)
36
TABLE 1 (Continued)
|
Mental
health
Study Sample age research Study
ID Year Country Sample characteristics range Sample size area designs Methods Study setting
32 2018 Canada Youth accessing care for NR 500 Health Descriptive Randomized Integrated
mental health concerns services controlled trial community‐ based
research collaborative
care team
33 2017 United 2 male, 9 female, most in 16‐18 11 Health Multiple Participatory design Community
Kingdom education services methods
research
34 2021 Canada Black youth living in 16‐30 30 interviews, 99 Public health Participatory Qualitative interviews Community
Alberta, gender diverse, in conversation research qualita- and focus groups
predominantly Christian cafes tive study
35 2021 United Students in 2 schools 18‐Nov 115 Public health Priority‐ Priority‐setting Schools
Kingdom research setting
36 2021 Canada NR NR 28 Health Qualitative Qualitative study Integrated

services study community‐ based
research collaborative
care team
37 2022 Norway 1 adult researcher and 10 adolescents 11 Health Authoethno- Autoethnography of University of
youth researchers over 15, services graphy patient Stavanger
involved in youth adult research engagement in a 4
engagement in research year mental health
research project
15 2021 United NA NA NA Clinical Systematic Systematic review NA

Kingdom research review
Youth with
lived
experience
Number of of mental
Study youth health Model of youth Specific
ID Study primary purpose(s) Key findings Study focus researchers Age ranges Ethnicity Gender/Sex concerns engagement methods
23 How do playtime Four themes: having Study report with 4 9‐10 years old 2 white, 1 2 boy 2 girls No Research and Co‐produce
experiences impact someone to play with, engagement chinese, 1 Development in
social, emotional and games, things about embedded pakistani, all Organisations
mental health and well‐ playtime and how British born (RADIO) model
being, from the people treat each
perspective of children? other.
McCABE
ET AL.
TABLE 1 (Continued)
McCABE
Youth with
lived
ET AL.
experience
Number of of mental
24 Aim to engage with youth Research areas highlighted: Study report with NR NR NR NR Yes IAP2 Core Values for Advisory
and parents (or (1) Access to mental engagement the Practice of meetings
caregivers) in an health and addictions embedded Public Participation
emerging program of services; (2) Gaps in
research aimed at care; (3) Standards of
understanding care; (4) Stigma; (5)
increasing mental Experience of care;
health ED Also made
presentations in a recommendations for
Canadian paediatric future engagement
tertiary health centre activities
to support the
development of
effective
interventions.
25 To qualitatively explore Themes: (1) Shifting Study report with 3 18+ NR NR Yes McCain Model for NR
the experiences of awareness of the engagement Youth Engagement
youth in relation to meaning of ‘transition’, embedded
their knowledge, (2) Ready or not to
expectations, and transition, (3) Mixed
experiences reactions to transitional
transitioning out of age of 18 years, (4)
CAMHS services at Lack of information,
age 18. preparation and
involvement in the
transition planning
process, (5) Confusion
around roles and
responsibilities within
the transition process,
(6) Concern over
transition gaps leading
to poor mental health
outcomes
(Continues)
| 37
38
TABLE 1 (Continued)
|
Youth with
lived
experience
Number of of mental
26 Prioritizing and refining 26 core components; 3 Study report with 3 NR NR NR Yes NR Advisory
the core components themes: (1) need for engagement meetings
of effective transitions youth and adult embedded and co‐
from child and services to collaborate, produce
adolescent to adult (2) suggestions on how
mental health services to operationalize core
components, (3)
barriers to
implementation
27 Explore the feasibility and Four main themes: (1) Study report with 7 18‐25 years old 5 White 2 male, Yes NR Advisory
acceptability of dealing with mental engagement British, 5 female, meetings
technologies to detect health symptoms, (2) embedded 1 British‐ and co‐
mental health signs of mental health Asian, produce
deterioration deterioration, (3) 1 Black‐
technology concerns British
and values and (4)
technological
applications to identify
worsening mental
health.
28 Explore the experiences Co‐producing research Study of 7 18‐25 years old 5 White 2 male, Yes NR
and impacts of with youth makes a engagement British, 5 female,
engagement in a significant impact to 1 British‐
qualitative study the research, Asian,
researchers and co‐ 1 Black‐
researchers; co‐ British
production takes time;
build flexibility into
budget and more
interview training is
recommended.
McCABE
ET AL.
TABLE 1 (Continued)
McCABE
Youth with
lived
ET AL.
experience
Number of of mental
29 Explore what matters to Two themes: factors that Study report with 4 between 16‐25 NR NR Yes Participatory action Advisory
young people living in supported an engagement research informed meetings
a 12‐month voluntary environment for young embedded by the critical and co‐
residential program for people to thrive, and emancipatory produce
young people the ‘change work’ that paradigm
aged 16–25. young people
undertook
30 Explore “risk” in inpatient Priority areas of “risk” of Study of 2 under 18 NR NR Yes Nominal group Advisory
mental healthcare with inpatient stays for engagement technique meetings
an evidence synthesis MHC: Dislocation,
and input from Contagion, Harm from
stakeholders organisation,
Institutionalisation,
Self‐harm, Decision‐
making, Suicide,
Aggression, Other (in
contrast to the clinical
risks found in the
literature ie self harm
and aggression)
31 To develop user‐ 16 quality standards for Study report with 29 16‐25 NR NR Yes NR Advisory
generated quality youth mental health in engagement meetings
standards for young primary care embedded and co‐
people with mental produce
health problems in
primary care using a
participatory research
model.
32 For youth with mental A description of facilitators, Study of 30 16‐26 NR 2 male, Yes McCain Model for Co‐biuld
health concerns, does barriers and youth engagement 6 female Youth Engagement
an integrated researcher activities
collaborative care
model, compared to
usual care, result in
better outcomes?
Economic evaluation
|
of the new model

39
(Continues)
40
TABLE 1 (Continued)
|
Youth with
lived
experience
Number of of mental
33 To understand the Two ways of supporting Study of 12 16 NR 2 male, No Nominal group Advisory
emotional support young people's mental engagement 9 female technique meetings
related needs of young health: provide choice,
people. raise awareness
34 The purpose of this Barriers to mental health Study report with 10 NR Black NR No Youth empowerment Meetings,
qualitative research care access: lack of engagement model situated co‐
study was to identify cultural safety and embedded within produce
the barriers and inclusion; lack of intersectionality
facilitators to mental knowledge/information theory
health care for Black on mental health
youth in Alberta. services; cost of mental
health services and
geographical and
locational barriers;
stigma and
judgmentalism; and
limits of resilience
35 Describes the Student health priorities Study report with 115 18‐Nov “cultural and 100 female, No NR Advisory
establishment of a centred on mental engagement linguistic 15 male meetings
youth research health and stress embedded diversity”
advisory group to plan
health research
36 Explore the research A description of facilitators, Study of 7 NR NR NR Yes McCain Model for Co‐produce
team's experience of barriers and engagement Youth Engagement
youth and family recommendations for
engagement in the youth engagement in
design of an RCT and mental health research
clinical pathway.
McCABE
ET AL.
TABLE 1 (Continued)
McCABE
Youth with
lived
ET AL.
experience
Number of of mental
37 To understand the 6 themes: (1) Commitment Study of 10 Adolescents “a variety of “both Mix NR Advisory
collaborative motivated by altruism, engagement over 15 different genders” meetings
relationship between a personal interests and a years of age ethnic and co‐
lead researchers and common purpose, (2) back- produce
youth researchers in a Inclusiveness and grounds”
research project support to reduce and with
aiming to improving social uncertainty and different
mental health services strengthen life and
for adolescents. collaboration, (3) healthcare
Reduced power experi-
differentials while ences
ensuring clarity of roles
and task, (4) Diversity in
representation to
expand the
perspectives of ‘the
adolescent voice’, (5)
Self‐determination ‐
supporting adolescents’
involvement in
decision‐making
processes, (6) Flexible
and systematic project
management.
15 Understand interventions Challenges, facilitators and Study of 8 17‐Oct NR 3 male, 8 Yes INVOLVE principles Advisory
for mental health in recommendations for engagement female and values meetings
children with long youth engagement
term conditions.
| 41
42 | McCABE ET AL.
TABLE 2 Research activities performed by youth researchers
Co‐production Advisory role References
Co‐produce an agreement on roles and responsibilities for [32, 36, 37]

research team
Co‐develop research design/protocol [23, 27, 28, 32, 34, 36, 37]
Advise on scope of research, research design/focusing [15, 23, 30, 34, 37]
research question
Co‐develop funding proposals [30, 34, 37]
Advise on recruitment strategies [26–28]
Co‐develop study informational materials [26–28, 32, 36, 37]
Recruitment of participants [34, 37]
Participate in advisory meeting(s) [24, 30, 33, 35]
Advise on environment/contextual factors for participant Advise on contextual factors and ways of relating for [24, 32, 36]
interactions participant interactions
Advise on data collection instrument(s) (survey, [25, 26]

interview guide)
Co‐develop data collection instrument(s) (survey, [27–29, 34, 37]

interview guide)
Co‐facilitate focus groups/interviews/gather [23, 27–29, 31, 34, 37]

observational data from peers
Review content/thematic analysis and interpretation [15, 25, 26, 31]

of findings
Co‐analysis of qualitative data [23, 27–29, 31, 33, 34, 37]
Advise on dissemination strategies for stakeholders [26]
Present findings to stakeholders [15, 23, 29, 34, 37]
Co‐present at academic conferences [15, 27, 28, 37]
Review journal manuscripts and final reports [15, 33]
Co‐write journal manuscripts and final reports [25, 34, 37]
Co‐produce recommendations for action based on [23, 31, 35]

research
(n = 9), by co‐presenting and advising on knowledge translation broadened their networks and enhanced their understanding of the
strategies. Enhancing the relevancy of research topics was another research findings.27,28 A sense of pride in the youth researchers'
common impact reported in six studies, and four studies reported development over the course of the project was mentioned in two
that having youth on the research team enhanced the safety and studies.15,37 In one study, authors reported a greater sense of
24,27,28,32,36,37
comfort of their research participants. One study accountability for their research and thus more motivation to perform
reported that youth engagement made decision‐making more high‐quality research, which was described as positive.15 Related to
efficient because youth provided perspectives that made the decision this, in two studies, a greater sense of responsibility for youth
clearer.32,36 Another study reported the opposite, that decision‐ researchers was reported as having a negative impact on adult
making was less efficient, but this was attributed to the adult researchers.27,28,31
research team members' intention to create an inclusive environ- Youth researchers reported positive findings, feeling empowered
37
ment. Besides the efficiency of decision‐making, other negative and respected, particularly when witnessing their input being acted
impacts included the increased resources required for youth upon15,23,30 and increased confidence in their abilities.27,27 They
engagement (n = 6), and that youth may have unintentionally reported that they gained knowledge about research and mental
influenced data collection by asking leading questions or reassuring health, and developed research, project management and communi-
participants and sharing their own experiences.27,28 cation skills.15,23,27,28,37 A sense of social connectedness and
Adult researchers reported increasing their knowledge of youth expanded networks were mentioned15,27,28,37 as well as the research
15,27,28,32,36,37
engagement strategies, stating that youth engagement experience being a benefit for their job resumes and applications for
McCABE ET AL. | 43
TABLE 3 A description of youth engagement by level of engagement and stage of research involvement
a
Hybrid model of primary partnership with a small number of co‐researchers, with a larger advisory committee that was consulted for key stages in the
research study.
postsecondary education and generating income.37 Figure 2 illus- and retention of youth researchers, and one study mentioned that as
trates the impacts of youth engagement in research. youth researchers become more skilled and acculturated to academic
research environments, there was a need to monitor whether they were
still representing the youth voice.32,36 A final area of challenge related to
3.6 | Facilitators and challenges to youth navigating diverse perspectives and priorities of the research team. For
engagement example, adult researchers prioritize rigour versus youth wanting to
reassure participants,27,28 managing divergent youth and caregiver
Table 5 describes the challenges and facilitators to meaningful youth perspectives,32,36 and perspectives of youth from different cultural
engagement reported by the authors. One challenge reported in three backgrounds.24,32,36,37
studies was the time and effort for relationship‐building within the Relational facilitators of engagement included creating a safe,
research team, and this was considered especially important in a mental inclusive space for youth to share perspectives, adult researchers having
health context.15,27,28,37 There were challenges related to the recruitment an awareness of power dynamics and how they are relating with youth,
44 | McCABE ET AL.
TABLE 4 Impacts of youth engagement on the research process and researchers
Positive impacts Negative impacts
Research process Increase relevancy of research topics More resources (time, effort, funding)
Enhances safety and comfort for participants
Shape data collection and resultsa
Efficiency of decision‐makinga
Enhance trustworthiness of findings
Enhanced dissemination of findings to academic, health

system and patient audiences
Personal impacts
Youth researchers Feeling empowered, respected, confident
Gaining knowledge about mental health and research
Social connectedness
Career development
Financial gain
Youth and adult researchers Expand network
Adult researchers An appreciation for youth engagement in research Greater sense of responsibility
Increased accountability for research
Sense of pride in youth researchers' development

a
Reported as both positive and negative impacts in different articles.
and efforts to build genuine and trusting relationships. Process recommendations. We also revised the wording of some of the
facilitators included having a dedicated youth engagement coordinator recommendations based on their feedback. One youth (J. M.)
and providing refreshments and compensation for youth researchers. produced the visual of the impacts and also contributed to the
writing of the manuscript, he is included as a co‐author on this paper.
3.7 | Recommendations for youth engagement

4 | D IS CU SS IO N
Four articles contained recommendations for youth engagement in
mental health research,15,27,28,36,37 while other articles contained Patient engagement research impacts have been conceptualized as
recommendations embedded within Section 4. Table 6 contains a both positive or negative, short or long‐term, and are either related to
summary of recommendations for youth engagement. Recommenda- the research process (e.g., research instruments, outcomes measure
tions were around training for both youth and adult researchers, the choice, data collection design, delivery, time, dissemination) or
composition of the youth on the research team, processes for impacts to the people involved (e.g., youth and adult researchers'
engagement, approaches to consultation meetings, agreement experiences).38 Documented impacts of youth engagement on the
between youth and adult researchers about expectations, roles and research process include a positive influence on research design,
responsibilities, elements of the relationship between youth and adult recruitment, data collection and analysis and dissemination.39 It has
researchers and the conditions in which engagement occurs. also been reported to increase the youth friendliness and validity of
research, the usability of practical tools, accessibility of consent forms
and questionnaires and increase media attention.7,39 There were few
3.8 | Youth engagement in this review negative impacts reported, but inexperienced youth facilitators can
negatively impact the quality of focus group data, and youth may
Overall, the youth agreed with the findings of this review. They interpret findings in relation to their own experiences impacting
emphasized that overcoming the power differential between youth generalizability.39 Skill development, feeling empowered, confident
and adult researchers, as well as the representation of diverse youth and valued, as well as enhanced social connectedness, are positive
voices was important. Their input resulted in the addition of one new impacts reported by youth engaged in research.7,39 Academic
impact, two new challenges, the reorganization of the recommenda- researchers report an increased feeling of commitment to their
tions section and the addition of concrete examples to some of the project, inspiration and pride in their work.39 In this review, the
McCABE ET AL. | 45
F I G U R E 2 The impacts of youth engagement in mental health research. The two‐way arrows represent the effects that youth researchers have
on the adult researchers and the research process and that also the adult researchers and being engaged in research has an impact on youth.
TABLE 5 A description of the facilitators and challenges to youth engagement
Facilitators of youth engagement Challenges of youth engagement
Relational Create safe spaces More time/effort to build relationships, especially in mental health which
Reflexivity in adult researchers (i.e., an awareness of can be a sensitive issue
power dynamics, how they are relating with youth) Power imbalance between youth and adults
Efforts to build relationships (genuine, trusting) between Communication barriers between adult and youth researchers
youth and adult researchers Navigating diverse perspectives/conflicting priorities (adult vs. youth, youth
Power‐sharing with youth (i.e., empowered in decision‐ vs. parents)
making, treating youth as equals) Managing youth expectations (e.g., about the impact of the project)
Using accessible language
Process Using youth‐friendly communication tools (e.g., text More work to set up engagement (as a new process)
messaging) More work to support (e.g., training, accommodating needs) and coordinate
Having a dedicated youth engagement coordinator youth engagement
Building relationships with community organizations More funding, time, work
Refreshments/ice‐breaking activities Recruitment of youth researchers (finding appropriate youth, representing
Flexibility with degree of involvement and scheduling diversity)
Use of pre‐ and debriefs for large meetings Monitoring whether youth are remaining representative (as they become
Having diversity among youth voices more involved in the project, youth researchers may begin to think more
Clear expectations for youth about engagement like adult researchers)
Sustaining engagement over the course of the project
Research ethics board
Balancing bringing together a diversity of backgrounds and perspectives
versus efficiency in decision making
Not involving youth early enough to influence project
Potential for youth engagement to affect research rigour
impacts of youth engagement ranged from enhancing the relevancy research engagement was the enhanced comfort and emotional
of research topics to enhancing dissemination and impact on the safety of research participants resulting from the involvement of
health system. This aligns with what has been found in other reviews youth. In one study, researchers used a pre‐engagement consultation
of youth engagement.39,40 An impact unique to mental health with youth and caregivers to design a distress‐sensitive approach to
46 | McCABE ET AL.
TABLE 6 Summary of recommendations for youth engagement in mental health research
Area Recommendations
Training Training should include education about the research topic, the research process and the opportunity to practice
skills before project start. Training on communication and leadership skills should also be included.
Training and support should be more intense early in the project, with a gradual reduction of support as youth
competency increased.
When transitioning youth into a project already in progress, be mindful that they are adequately prepared and have
the same opportunity for training as youth who begin at the start of the project.
Experienced youth researchers can lead youth research training.
Enhance academic researchers' knowledge of youth engagement, for example, include patient engagement as part
of a research Masters and PhD curriculum, provide additional training for established researchers.
Youth researcher composition Consider recruiting several youth at the outset of the project due to difficulty sustaining youth involvement
over time.
Ensure diversity in youth representation when appropriate for the project, including diversity in research
experience (include youth naïve to research).
Processes Engage youth early in the research process to optimize their impact on the project.
Have a dedicated engagement facilitator or share engagement coordination responsibilities with youth researchers.
Be strategic about youth engagement activities, plan ahead for engagement during key transitions in research
project when decisions will be made.
Have a flexible budget with a contingency fund for unexpected research activities suggested by youth researchers.
Build in a mechanism for asking for feedback from youth about the engagement process and how you will
incorporate feedback into the process.
Meeting approaches Provide opportunity for both written and verbal participation in the research process (e.g., nominal group
technique, opportunities for written feedback if a youth cannot attend a meeting).
Use age‐appropriate and engaging activities during consultation meetings.
Consider having youth co‐facilitate meetings.
When seeking feedback, use case scenarios and examples to make abstract concepts concrete.
Use warm‐up activities before consultation meetings.
Provide small group prebriefs for youth before meetings, explaining meeting objectives, key terms and an
opportunity to ask questions.
Hold small group debriefs after meetings, giving an opportunity to ask questions and provide feedback that youth
were perhaps reluctant to share with a larger group of research team members.
Provide refreshments.
Agreement on expectations Be clear with youth about the objectives of the project and its expected impact.
Establish clear role expectations, including the responsibilities of both the youth and adult researchers. This
includes an agreement about the degree of control that youth have over the project.
Relational elements To reduce power differential between youth and adults, establish a collaborative relationship between adult and
youth researchers, on a foundation of trust, respect and rapport.
Create a safe space for open discussion (e.g., include social identity in introductions, adult researchers being
transparent and genuine).
Dedicate time and funding for relationship building.
Demonstrate respect for youth and their impact on the project by following through on their decisions and
recommendations and sharing final results.
Engagement conditions Consider ways of minimizing the potential for distress in youth (e.g., hold sessions at community agencies they are
familiar with, provide peer and/or professional support, seek feedback from youth).
Include caregivers but use separate forums to encourage youth's voice and unique opinions.
Use youth‐friendly meeting spaces and communication tools (e.g., group messaging apps).
McCABE ET AL. | 47
TABLE 6 (Continued)
Area Recommendations
Flexibility with meeting times and venues to accommodate youth schedules.
Be flexible about the degree of involvement of youth.
Be aware of and accommodate physical, mental and emotional needs of youth.
Share power and leadership responsibilities with youth.
Incentives Include incentives like course credits and certificates of completion where possible.
Provide compensation for youth's time and travel for meeting and research activities.
their recruitment and data collection process, which included holding example, asking leading questions or incorporating their own
data collection sessions at community agencies with peer and experiences into data analysis.28 This was viewed by some as a
professional support, providing written materials, giving participants negative impact, but one that could be overcome through training
the option of providing written feedback and to separate youth and and close supervision.28 We also found that only one of the studies in
caregivers.24 Another study reported that youth completing inter- this review used quantitative methods,32,36 which could suggest that
views were able to quickly develop rapport with participants and researchers believe quantitative studies are not suited to engage-
humanize the interview process for them. This was felt to enhance ment or that youth engagement could limit the researchers' choice of
the emotional safety of participants, for whom talking about mental methods to answer a particular research question. This was an issue
health may be uncomfortable or stressful.28 that was also brought up by our youth researchers during the
We found that youth researchers reported many personal consultation meeting. However, outside of mental health research,
benefits to being engaged in mental health research, including feeling youth have been engaged in quantitative research, for example,
empowered, a sense of social connectedness, gaining knowledge and randomized controlled trials, comparative effectiveness research and
skills and enhancing career and education opportunities.15,23,28,30,37 measurement instrument development studies, which suggests that
Youth researchers felt that research engagement expanded their youth can be engaged in quantitative mental health research.40
professional networks, which was also reported by adult research- There were practical challenges encountered by researchers
ers.28,37 The impact on adult researchers of engaging with youth was engaging youth in mental health research. The increased resources
less often the focus of the studies, however, some impacts were that are needed for setting up and supporting engagement, recruiting
reported such as gaining an appreciation for engagement, increased and sustaining youth researchers throughout a project were men-
accountability for their research products and a sense of pride in tioned across almost all studies Adult researchers also grappled with
youth researchers' development.15,28,36,37 Adult researchers report ethical considerations as well as navigating conflicting priorities of
that youth engagement added more to their responsibilities during different groups, such as the youth and adult researchers, within
research, because of their desire to foster positive engagement youth researchers with different backgrounds and experiences, or
experiences for youth, which was viewed as both a positive and a between youth and caregivers.24,27,28,32,36 There were also chal-
15,28,31
negative impact. lenges related to the relationship between the adult and youth
The negative impacts of youth engagement include the increased researchers that needed to be overcome for productive working
time and resources needed for engagement, which is commonly relationships to develop between youth and adult researchers. These
reported across all types of patient engagement studies.39–43 included the inherent power imbalance between youth (as younger,
Researchers have reported concerns that youth with some mental novice researchers) and adults (as older, established researchers) and
health conditions could be vulnerable and engagement could communication barriers between youth and adults. While these
potentially negatively impact their well‐being, whether from experi- challenges are not unique to youth engagement in mental health
encing the power imbalance between adults and youths, or perhaps research, authors felt that their importance was heightened in a
embedding the mental health condition as a part of a youth's mental health research context, which is a potentially sensitive
identity.14,43 We did not find evidence of these potentially negative subject.15,28,36,37 Authors reported that putting in the time and effort
impacts in our review, which may be reassuring for mental health to build trusting and genuine relationships was a successful way to
researchers. Another potentially negative impact on the research overcome this challenge, as well as the adult researchers practising
relates to the methodological rigour of the research. Through their reflexivity (i.e., being self‐aware, reflecting on the way they relate to
involvement in data collection and analysis, youth very commonly youth researchers). This finding aligns with the recent interest in the
impacted data collection and analysis. This was viewed as positive in importance of relationships in patient engagement work.44,45
most cases, though there was some concern expressed about youth The findings of this review support the idea that youth are
introducing bias into data collection and analysis through, for willing and capable of being involved in research activities across
48 | McCABE ET AL.
the research cycle. Youth were involved, either in an advisory role Also, as this is a relatively new field, the terminology used in the
or performing research activities, at all stages of CIHR's research field of patient engagement varies across geographic settings.
cycle (i.e., from developing topics to disseminating findings). Studies Though we made an effort to be comprehensive in our search
reported successful youth engagement across all levels of engage- strategy, there is the possibility that we missed some studies due to
ment (Collaboration, Partnership, Youth‐led), which differs from variability in terminology. As well, since this review relied upon
some visions of patient engagement, where a partnership or authors' reporting on engagement activities, it is likely that some
complete control over research is considered the gold standard. activities and impacts were missed, especially in studies where
This supports the idea put forth by Greenhalgh et al.10 that a more engagement was not the focus of the article.
flexible approach to youth engagement, where the desired One final limitation in this review is the possibility of a bias in our
outcomes of engagement for the project and the motivations and findings towards more positive engagement impacts. This could be
capabilities of the individuals involved drive the engagement due to adult researchers' position of power exerting control
approach, rather than a single framework informing all patient (intentionally or unintentionally) over what is reported in the
engagement activities. manuscript leading to underreporting of negative experiences or
The recommendations contained in this article will be useful to impacts of youth engagement. Also, the inclusion criteria for this
researchers planning youth engagement in mental health research. review included a requirement that authors reported on at least one
They align well with the practical recommendations for youth activity and one impact on youth engagement. This may have created
engagement in health research put forth by Hawke et al.7 The led to a positive bias in our findings because researchers who report
recommendations from our review that might be considered unique more extensively about engagement may also have been more
to a mental health research context, such as creating a safe space for measured in their approaches to youth engagement, leading to
open discussion, accommodating emotional and mental needs, are positive engagement experiences for the research team. Similarly,
incorporated in Hawke and colleagues' recommendations. The youth due to the power imbalance between adult and youth researchers,
researchers we consulted in this review agreed with all the youth researchers may be reluctant to report the negative impacts or
recommendations in the review. They emphasized the importance experiences during the project. Finally, youth researchers could have
of overcoming power imbalances, which was a common theme experienced negative impacts in studies where youth engagement
among the articles in our review. They also felt that representation of was minimally reported or where youth engagement was not
diverse youth voices, in terms of ethnicity, race, gender and sexual evaluated. Therefore, our findings should be interpreted with some
identity and degree of experience in research was important. Related caution.
to this, they felt that adult researchers engaging with youth in a The impacts described in the articles were mostly proximal (e.g.,
mental health context should have training in trauma‐informed effects of youth engagement on the research process), with some
approaches, as well as cultural competence. Although this was not a intermediate (e.g., skill development of researchers). However, the
recommendation in any of the articles in this review study, it is long‐term impacts of youth engagement, such as impacts on patient
supported by Shimmin and colleagues' argument that patient outcomes, were not reported. As previously discussed, none of the
engagement should be underpinned by trauma‐informed approaches, studies described a formal assessment of the impacts of youth
46,47
as well as a recommendation in INNOVATE Research. This may be engagement. This unfortunately limits the extent of the evidence for
especially true in a mental health context, where typically youth youth engagement in mental health research and also suggests a
researchers are seeking to help shape a research project because of need for more formal evaluations of youth engagement in future
their experiential knowledge of mental health or mental health projects. While impact assessment is complex and requires more
services. These experiences may co‐occur with traumatic experiences resources, it is nevertheless important to lend credibility to the
and asking the youth to share their experiences may be retraumatiz- argument that patient engagement in research is worth the return on
ing or cause them significant distress.47 investment. To overcome the positive bias described above, these
evaluations could be led by youth, giving them more power to openly
report on engagement impacts.
4.1 | Strengths, limitations and future directions
A strength of this review is the rigorous study search and selection 5 | CONCLUSION
strategy, and our focus on describing patient engagement in lieu of a
traditional quality appraisal, which would have been less informative The overall purpose of this systematic review was to synthesize the
for this study. Also, we used an established method for aggregating impacts of youth engagement on mental health research. We
qualitative findings. aggregated the reported impacts of youth engagement across
A limitation of this review is the degree of youth engagement in research studies and described how youth were being engaged in
the project. Youth were involved at the later stages of the review but research, challenges and facilitators to engagement. The recommen-
were not involved in the conception or design of the review, which dations for youth engagement in mental health research contained in
may limit the relevancy of this review for youth involved in research. this article can be applied by researchers who are planning to engage
McCABE ET AL. | 49
youth in mental health research. This study provides an under- Based Ment Health. 2022;25(1):36‐44. doi:10.1136/ebmental‐2021‐
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Received: 29 July 2022 | Revised: 21 October 2022 | Accepted: 22 October 2022

Youth engagement in mental health research: A systematic

Erin McCabe PhD, MScPT, Post‐doctoral Fellow1 |

30 | wileyonlinelibrary.com/journal/hex Health Expectations. 2023;26:30–50.

under the headings of training, youth researcher composition, strategy, expectations,

1 | INTRODUCTION institutions. The arguments for patient engagement are philosophical

2.5 | Data extraction and synthesis

FIGURE 1 PRISMA diagram for article search and selection process

No studies reported a formal impact assessment of youth engage-

Study Sample age research Study

30 2017 United NA NA NA Clinical Systematic Systematic review Inpatient mental

group and nominal in service

36 2021 Canada NR NR 28 Health Qualitative Qualitative study Integrated

15 2021 United NA NA NA Clinical Systematic Systematic review NA

of the new model

TABLE 2 Research activities performed by youth researchers

Co‐production Advisory role References

Co‐produce an agreement on roles and responsibilities for [32, 36, 37]

Co‐develop funding proposals [30, 34, 37]

Advise on recruitment strategies [26–28]

Co‐develop study informational materials [26–28, 32, 36, 37]

Recruitment of participants [34, 37]

Participate in advisory meeting(s) [24, 30, 33, 35]

Advise on data collection instrument(s) (survey, [25, 26]

Co‐develop data collection instrument(s) (survey, [27–29, 34, 37]

Co‐facilitate focus groups/interviews/gather [23, 27–29, 31, 34, 37]

Review content/thematic analysis and interpretation [15, 25, 26, 31]

Co‐analysis of qualitative data [23, 27–29, 31, 33, 34, 37]

Advise on dissemination strategies for stakeholders [26]

Present findings to stakeholders [15, 23, 29, 34, 37]

Co‐present at academic conferences [15, 27, 28, 37]

Review journal manuscripts and final reports [15, 33]

Co‐write journal manuscripts and final reports [25, 34, 37]

Co‐produce recommendations for action based on [23, 31, 35]

TABLE 4 Impacts of youth engagement on the research process and researchers

Positive impacts Negative impacts

Enhances safety and comfort for participants

Shape data collection and resultsa

Enhance trustworthiness of findings

Enhanced dissemination of findings to academic, health

Youth researchers Feeling empowered, respected, confident

Gaining knowledge about mental health and research

Youth and adult researchers Expand network

Increased accountability for research

Sense of pride in youth researchers' development

3.7 | Recommendations for youth engagement

TABLE 5 A description of the facilitators and challenges to youth engagement

Facilitators of youth engagement Challenges of youth engagement

TABLE 6 Summary of recommendations for youth engagement in mental health research

Experienced youth researchers can lead youth research training.

Use age‐appropriate and engaging activities during consultation meetings.

Consider having youth co‐facilitate meetings.

Use warm‐up activities before consultation meetings.

Dedicate time and funding for relationship building.

Flexibility with meeting times and venues to accommodate youth schedules.

Be flexible about the degree of involvement of youth.

Be aware of and accommodate physical, mental and emotional needs of youth.

Share power and leadership responsibilities with youth.