key: cord-0938917-pwyk9p8q
authors: Chan, Michelle; Scott, Shannon D.; Campbell, Alyson; Elliott, Sarah A.; Brooks, Hannah; Hartling, Lisa
title: Research‐ and health‐related youth advisory groups in Canada: An environmental scan with stakeholder interviews
date: 2021-07-19
journal: Health Expect
DOI: 10.1111/hex.13316
sha: bec2ad59945b9bd88eb862897b3c6dae332f9ba2
doc_id: 938917
cord_uid: pwyk9p8q

BACKGROUND: Engaging youth throughout the research process improves research quality and outcomes. Youth advisory groups provide one way for youth to express their opinions on relevant issues. OBJECTIVE: This study aimed to identify research‐ and health‐related youth advisory groups (‘groups’) in Canada and understand the best practices of these groups. METHODS: Google searches and supplementary methods were used to identify relevant groups in Canada. Group information was extracted from websites or through interviews with key informants. RESULTS: We identified 40 groups. Groups were commonly part of a hospital/healthcare facility, nonprofit/health organization or research group. The majority focused on a specific content area, most commonly, mental health. Over half the groups advised on health services. Members' ages ranged from 9 to 35 years. The number of members ranged from 5 to 130. Interviews (n = 12) identified seven categories relating to group practices: (a) group purpose/objectives, (b) group development, (c) group operations, (d) group structure, (e) adult involvement, (f) membership and recruitment and (g) group access. Challenges and facilitators to the success of groups were described within the following themes: (a) retaining engagement, (b) creating a safe environment and (c) putting youth in positions of influence. Advice and recommendations were provided regarding the development of a new group. CONCLUSION: This study provides a comprehensive overview of research‐ and health‐related youth advisory groups in Canada. This information can be used to identify groups that stakeholders could access as well as inform the development of a new group. PATIENT OR PUBLIC CONTRIBUTION: Youth advisory group representatives were interviewed as part of the study.

Over the last decade, there has been a growing reconceptualization of young people in health and research contexts. Young people are now more than ever actively participating in setting research agendas, codesigning research studies, informing knowledge translation activities 1 and acting in an advisory capacity to researchers and policy makers. [2] [3] [4] [5] Empowering young people to share their unique and valuable experiences can improve research quality and relevance by ensuring that research projects and outputs (e.g., knowledge translation tools) align with the needs and perspectives of youth. [6] [7] [8] Youth engagement has been defined as 'the meaningful and sustained involvement of a young person in an activity focused outside the self'. 9 One approach to engaging young people is through youth advisory groups. Such advisory groups (either general or population/patient-specific) allow youth to be included as partners offering advice and feedback on issues that affect them, rather than simply acting as participants in the process. 2, 10 In Canada, there is emerging literature on the development of youth advisory groups in research and health. 2, [11] [12] [13] [14] For example, Ramey et al. 14 describe a youth advisory group focused on youth health issues. The group is involved in decision-making, advocacy and coordination of their own projects. Evaluation of the group identified positive relationships between youth and adult allies, opportunities for new perspectives on youth priorities and opportunities for skill development. Various models have been proposed to conceptualize youth engagement in research. 2, 13, 15 One that has been successfully applied in a Canadian context is the McCain Model of Youth Engagement. 13 The model outlines the varying levels at which youth can be engaged in research projects based on their interests, skills and availability.

While the value of incorporating the patient/consumer voice in research is well established, there is little practical guidance for researchers looking to work with youth in an advisory capacity. Our research programme is focused on improving health outcomes for children through knowledge translation. As such, we are interested in understanding how best to work with an existing youth advisory group (if available) to provide input on our research activities and/or develop a new group to support our work.

To facilitate this, a comprehensive search to identify and provide information on research-and health-related youth advisory groups is needed. Environmental scans (ESs) are a method of gathering information about current and emerging issues through a systematic search of websites and other sources. 16, 17 Additionally, Internet searches are increasingly being used in health research to collect and organize information. [18] [19] [20] The objectives of our study were, therefore, to conduct an ES to (1) identify research-and health-related youth advisory groups (referred to herein as groups) in Canada and (2) better understand the structure and functioning of these groups, including best practices (i.e., recommended approaches for successful youth engagement).

This study involved two phases: First, the Internet and supplementary search methods were used to identify relevant groups; second, interviews were conducted with key informants to obtain more information about the identified groups.

Two independent searches were conducted using Google's Advanced Search function between January and February 2020 by A. C. The first search aimed to find groups using the following search terms:

(child OR youth) (health OR research) (advisory) (club OR group OR council OR network OR committee). After finding a small number of results that were specifically research or health related, we expanded our second search by removing (health OR research). The first 100 website URLs from each search string were reviewed. 21 The search was limited by region to 'Canada' only. The search terms were developed through examination of peer-reviewed literature and consultation with the research team.

Screening and full review of each website were conducted concurrently. The following inclusion criteria were applied: (a) members include children/youth (<35 years); (b) the group is research or health related; (c) the group is based in Canada; and (d) the group has an advisory role (defined as a group of individuals that provides advice and feedback on important issues for an organization or research team). We limited our search to Canada as one of our objectives was to identify groups that our research programme could access to support its activities in a Canadian context. To supplement the internet search, we hand-searched reference lists of relevant articles, contacted relevant organizations to ask if they were affiliated with a group and to identify others and consulted key informants from relevant groups (Phase 2).

The Internet search was complemented by interviewing key informants at relevant organizations identified from the search.

Attempts were made to contact informants from 15 organizations whose mandate and activities most aligned with the work of our research programme (Table 1) . Key informants were identified as those who currently co-ordinate the group and/or work at an organization overseeing the group. Informants were contacted about the study via email or telephone, with a follow-up within 1-2 weeks if there was no response. Upon agreement to participate, a phone or online interview was scheduled at a convenient time for the informant. Participants provided written, informed consent before the interview. Ethics approval was granted by the University of Alberta spectrum differentiates between five levels of engagement in decisionmaking processes: Inform, Consult, Involve, Collaborate and Empower. 22 The spectrum has been used in various countries including Canada; 23 therefore, we adapted it to describe the different ways in which youth can be involved in decision-making ( 

Interview data were uploaded to NVivo 12 qualitative data management software and analysed using content and thematic analyses by M. C. Transcripts were read in detail several times. Phrases in the text were identified and codes were developed to represent key concepts.

The codes were then grouped into categories and themes. 24 A second coder (A. C.) verified the coding, categories and themes in a random subset of interview data (25%), 25 with no disagreements. Rigour was ensured by using strategies such as an audit trail, reflexivity and immersion in the data, as suggested by Lincoln and Guba, 26 | 1765 ( Figure 1 ). An additional 15 groups were identified from the supplementary search method, for a total of 40 groups included. The characteristics of the included groups are shown in Table 3 .

Affiliations of the 40 groups included hospital or healthcare facility (n = 14, 35%); research or knowledge mobilization centre, group or network (n = 8, 20%); nonprofit or health organization (n = 10, 25%); integrated youth services initiative (n = 4, 10%; integrated youth services bring together service providers to create accessible, youth-friendly, integrated hubs for mental health, substance use and related issues); city government (n = 2, 5%); collaborative initiative of researchers and service providers (n = 1, 3%); and federal government (n = 1, 3%).

The level of operation for one group was not known. Of the other 39 groups, most operated nationally (n = 14, 36%) or locally (n = 12, 

The group receives information from the organization, government or research team to assist in understanding the problem

The group provides feedback on analysis, options and/or decisions

The group works directly with the organization, government or research team throughout the process (i.e., research process, service design process, policy development process, etc.) rather than only at a particular stage The organization has additional local youth advisory groups at individual centres/sites.

| 1771 31%). Seven groups operated provincially (18%), five regionally (13%) and one interprovincially (3%).

Amongst the groups with known year of establishment (n = 32), the majority were established between 2010 and 2020 (n = 24, 75%).

In comparison, only seven groups were established earlier, between 1989 and 2009. The median year of establishment was 2015.

Over half of the groups (n = 26, 65%) focused on a specific content area, with mental health being the most common (n = 19, 48%). Other areas were disabilities (n = 3), brain-based disabilities (n = 1), tobacco use (n = 1) and food allergy (n = 1). One group focused on issues of injury prevention, mental health, growing healthy bodies and the environment (n = 1). Groups with more than 30 members were national or regional (n = 4, 14%). The age of members ranged from 9 to 35 years. For five groups, members' ages were not reported.

Of the 37 groups with known membership criteria, 10 (27%) required members to be a patient (or sibling of a patient) treated at a hospital or healthcare facility. Another common criterion for membership was specific lived experience (e.g., mental health challenges, disabilities; n = 10, 27%). Other requirements for membership included being a high school student (n = 1), a high school student/ postsecondary student/community youth representative (n = 1) and

Metis youth (n = 1). For 14 groups (38%), members were made up of youth in general (with or without lived experiences) and/or youth who were passionate about the group's area of focus.

Of the 26 groups with known information on frequency of meetings, the majority met monthly (n = 15, 58%). Other meeting frequencies were bimonthly (n = 3), six times/year (n = 2), four times/year (n = 2), weekly (n = 1) and biweekly (n = 1). Two groups met monthly or bimonthly.

Of the 13 groups with available information on meeting times, the majority met on weekday evenings (n = 9, 69%) and 4 met during the day on Saturdays (31%). Of the 17 groups with available information on meeting duration, 10 (59%) had meetings that were 2 h long and 5 (29%) had meetings that were 1-1.5 h long. Two groups (13%) had meetings for a whole day on Saturdays.

Of the 24 groups with known information on meeting format, 

The purpose of many groups was similar and typically revolved around providing a youth perspective on research-related activities or T A B L E 4 Quotes from key informants illustrating the themes and categories

Group practices 1. Group purpose/objectives "…the purpose of the council is to provide a youth perspective on decisions made in the hospital that will be affecting youth and children patients…" (Y-003)

"…to integrate youth perspectives into youth health research." (Y-012) 2. Group development "There was a lot of shared literature and shared practices primarily based out of the UK and Europe that was very helpful in helping us start and form the foundations of the national Canadian group." (Y-001)

"The first thing we did was we did a literature review of other [youth advisory] councils…. and then after that … we started interviewing other [youth advisory] councils and youth experts in [the city]." (Y-012)

3. Group operations "People that run a program or service, looking to change a policy or a procedure or anything to that effect, would generally come to our group and consult with us asking, 'What do you think? What would you like to see changed? Do you think this is a good program? Would there be uptake?'" (Y-010)

"…[a] researcher contacted us and wanted [the youth advisory group] to go over a survey tool that they were developing for use with children and youth…" (Y-001)

"Primarily our meetings are consultations…. we have a lot of researchers that come in contact with the group for advice or…consultation" (YAG-001)

"…[at meetings] we discuss topics that are brought to us from directors of departments and leaders and … give feedback on [projective/initiatives] that they bring to us." (YAG-003) 4. Group structure "We thought that the more [staff] roles you put in, the more [the youth] feel like they're not contributing to the discussion as much." (Y-012) Advice/recommendations for developing a new group "…one huge takeaway is youth are youth. They have their own lives, they have their own interests, and they are not the same as adults. There are a number of considerations that have to be kept in mind when … [engaging] with youth." (YAG-008)

"…make sure there is informed preparation for each of your consultations…. A lot of the times what happens is [the] youth are not adequately prepared before they come to the consultation table and so they don't participate as fully themselves…" (YAG-001) coordination, logistics and liaising with stakeholders. One group had a larger and more hierarchical organizational structure with a patient engagement co-ordinator (responsible for connecting with stakeholders and bringing consult requests to the group), three staff facilitators and a leadership team (made up of five youth members who represented the group and worked alongside the staff facilitators).

Almost all groups had minimal adult involvement. Aside from guest speakers, parents of the youth and other adults were not involved in any advisory capacity and did not attend meetings. Some key informants said that keeping the adult presence/voice out was important to ensure that members felt comfortable and free to express their thoughts.

All key informants said members in their groups were volunteers and Half of the groups did not have a formal application and/or interview process for interested members. Six groups required youth to fill out an application if they were interested in joining the group. Of these, five conducted an interview with their applicants.

Most groups did not offer formal training/orientation for new members. However, groups that focused on research were more likely to provide training/orientation on topics such as research methods, ethics and the basics of patient-oriented research.

Almost all groups accepted requests from external researchers or organizations to access their group; however, internal requests were typically prioritized. To access most groups, stakeholders were to contact the staff co-ordinator and they would bring the project/initiative to leadership for approval and/or schedule a meeting to discuss further. One group required stakeholders to complete a formal council engagement request form. Requests were often screened for appropriateness and fit and scheduled by the staff co-ordinator. For two groups, external requests were accepted or declined by youth members through general consensus.

3.4 | Themes related to facilitators and challenges around engaging youth

Creating a safe environment for youth was the most common facilitator to the success of groups. Key informants commented on the value of having a safe space where youth feel respected, included, supported and comfortable enough to engage.

Many key informants noted the success of their group resulted from giving members leadership opportunities. For many groups, acting in an advisory capacity was only part of the group's activities. Members also led their own projects and events. These activities were all youth-driven. Staff supported the youth, but allowed them to lead the process. Key informants said that it was important to allow members to come up with ideas and make decisions.

Many key informants highlighted that retaining youth engagement and interest was a challenge. Four noted that some members in their group did not attend meetings regularly, which reduced member attendance and made meetings less engaging. 

This study aimed to identify and provide a comprehensive overview of research-and health-related youth advisory groups in Canada. The purpose of many groups was to provide a youth perspective on research-and/or health-related activities that have an impact on children and youth. The literature shows that hearing from youth on issues that affect them is the best way to identify priorities and ensure that processes and outcomes reflect the needs and views of youth. 6, 7 From the ES, we identified 40 groups across Canada that en- development. 4, 5, 27, 27, 28 Mental health was the most common area of focus, with almost half of the groups in our scan advising on mental health-related research projects and programmes/services within their organization and/or at a system level. This is not surprising as the literature in the last decade has called for an increase in youth engagement in mental health research 29 and service planning. 27 Many groups adopted a youth-friendly approach to meetings by setting a casual tone and encouraging youthful styles of working that were social and interactive (e.g., writing down ideas on sticky notes and placing them on a wall, incorporating socializing time at meetings). 40 Much of the literature on youth engagement in research, health settings and the community provides recommendations for the creation of youth-friendly spaces that are safe and welcoming for youth. 1, 41, 42 Youth members often chaired and facilitated meetings, as well as led their own projects and events. Findings show that when youth are given more autonomy and responsibility, they become more engaged

and motivated in what they do. 40 The literature also speaks to the multiple benefits associated with providing youth with leadership opportunities. 8 In research, when youth see other youth in leadership positions (e.g., facilitating discussions), it may build their confidence to share ideas and increase participation. 1 Creamer et al. 43 found similar challenges with respect to maintaining members' attendance and engagement in a mental health promotion group for young people. Hawke et al. 1 recommend providing some kind of formal recognition to young people so that they know that their time and contributions are being valued; this could be in the form of wages, an honorarium, references, letters of support and/or certificates. van Schelven et al. 28 also suggested reimbursing young people involved in research to increase commitment to projects.

A gap was revealed in terms of training/orientation for new members. A common barrier cited by group leaders was a lack of access to educational training materials. Tsang et al. 3 

Almost all groups were willing to provide access to their group by external researchers or organizations, which questions the need to form a new youth group. The process of developing a new group, from the background research to launch, takes time and resources in terms of staff, finances and processes. Thus, tapping into an existing group may be more efficient and cost-effective. Another benefit is that it may offer researchers and organizations more flexibility, as they can access different groups according to specific needs. However, the disadvantage to accessing an existing group is the potential for delays in waiting for access. Many groups work on a project-byproject basis and leadership and/or staff must review and approve the project before it can be put forward to the group. In most cases, internal projects/initiatives are prioritized over external ones.

While this ES used a comprehensive and systematic process, there are limitations due to the lack of methodological guidance for this study method. It is possible that relevant groups were missed as information on the Internet may not be accurate and/or up to date.

While we interviewed 15 key informants from 12 organizations, they may not be representative of all groups included in the scan. It is noteworthy that we only reached out to groups that were most relevant to helping our research programme understand how youth engage in research/health-related processes. Further, the groups identified in this scan are based in Canada, excluding some groups that may be relevant, but located in other countries. Finally, we did not include youth in the design or conduct of this study; this would have added an additional perspective on this topic and should be a consideration for future work in this area.

As evidenced by the current number of groups, there is a growing recognition that youth are important stakeholders in research and healthcare. This study provides a comprehensive overview of research-and health-related youth advisory groups in Canada. Our findings provide insight into what groups currently exist, including their purpose, structure, operations and best practices. Considerations, as well as facilitators and challenges, for how best to engage CHAN ET AL.

| 1777 youth were also presented. This information could be used to identify groups that researchers and other relevant stakeholders could access, as well as inform others interested in developing a research-and/or health-related youth advisory group.

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The authors declare that there are no conflicts of interest.

All authors contributed to the conception and design of the study.

supplementary searches, extracted the data and analysed the data.

Michelle Chan analysed the interview data. Michelle Chan developed the initial draft of the manuscript. All authors reviewed, read and approved the final manuscript.

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

http://orcid.org/0000-0003-4412-3785