The Wellness Quest: A health literacy and self‐advocacy tool developed by youth for youth mental health

Abstract Background Less than 20% of youth who experience mental health difficulties access and receive appropriate treatment. This is exacerbated by barriers such as stigma, confidentiality concerns and lack of mental health literacy. A youth team developed the Wellness Quest: a health literacy tool to enable help‐seeking youth to advocate for themselves. Objective To evaluate the content, presentation and utility of the Wellness Quest tool among youth. Participants Participants aged 14 to 26. Methods A youth research team conducted five focus groups and one online survey to evaluate the Wellness Quest tool. Thematic analysis was used to analyse the qualitative data, and descriptive statistics were used to explore the survey results. Main results Overall evaluations of the Wellness Quest were positive: participants felt it would be useful during their mental health help‐seeking journey. Participants expressed the need for information about services for specific populations, such as Indigenous, immigrants, refugees and 2SLGBTQ + youth. They expressed that the tool should be available in complementary online and print versions. Discussion Improving mental health literacy may improve mental health by enabling youth and those who support them to recognize and respond to signs of distress and understanding where and how to get help. The Wellness Quest tool may equip youth with the knowledge to make informed decisions and advocate for their own mental health, thereby facilitating help‐seeking among youth. Patient or public contribution Youth as service users led all stages of the project, from designing and conducting the study and analysing the data to writing the manuscript.

engagement for the youth, as well as an increase in the feasibility, youth-friendliness and ecological validity of the research. 17 There are numerous examples of successful youth-led health studies across multiple settings and locations. [18][19][20] For example, in a study among street-involved youth, participants reported that the service user-led approach positively impacted the quality and quantity of data that were collected from other street-involved youth participants. 20 In such studies, youth have made substantial contributions to creating health programmes and services that can better meet the needs of the youth. 21

| McCain Model of Youth Engagement
The McCain Model of Youth Engagement 16

| The Wellness Quest project
Wellness Quest is a health literacy and self-advocacy tool developed by NYAC that aims to help treatment-seeking youth advocate for themselves in their mental health care. Developed by youth, for youth, the Wellness Quest project aims to move young people from the role of patient to partner in their mental health care. The Wellness Quest tool is composed of a checklist and a guide. The checklist helps young people identify the issues and services that are most important to them. It lists services, potential partners in treatment, and accessibility concerns, so that service providers and youth can work together to develop the best treatment plan for that individual. The guide provides an explanation of these issues and services in an engaging, easy-to-navigate format, with youthfriendly language. The guide provides detailed information to help youth complete the checklist, so that they can use it as a tool for conversation with their service provider(s). The guide also suggests questions for young people to ask their service provider to ensure they are well informed. The checklist and guide work hand in hand to assist and educate young people seeking treatment, with the goal of self-advocacy.

| Objective
This youth-led study evaluated the Wellness Quest tool through focus groups and a national survey to understand youth perspectives about the Wellness Quest tool's content, presentation, utility, and ability to promote self-advocacy, to guide the next stage in tool development.

| ME THOD
To assess the Wellness Quest tool content, presentation and utility, and ability to promote self-advocacy, a team of eight young people from NYAC took the tool into their own communities to be evaluated in focus groups of young people aged 16 to 26. This age range is within the definition of youth suggested by Statistics Canada, that is 15-29. 22 A national online survey was also conducted by young people from the McCain Centre Youth Engagement Initiative. The study was approved by the CAMH Research Ethics Board.

| Participants
Five focus group consultations were conducted in five provinces across Canada in locations ranging from large urban centres to a smaller town -Calgary (Alberta), Toronto (Ontario), Winnipeg (Manitoba), Saskatoon (Saskatchewan), and Grand Falls-Windsor (Newfoundland) -with a total of 52 participants. For a city to be included, they needed to have at least three unique mental health services available to young people, to ensure that participants could reflect on the tool in the context of local service availability.
An anonymous survey was available nationwide. Twenty-five participants provided data on at least the first section on the content of the scale and were included in the analyses.
To be eligible, the young person had to be between the ages of 16 and 26 and reside in Canada. Due to a mistaken protocol deviation, one youth under the age of 16 was recruited into the study, that is a 14 year old. The Research Ethics Board was informed of this deviation and approved the inclusion of their data in the study.
Recruitment for both the focus groups and online survey occurred through posters shared via Facebook, Twitter and email, to preexisting youth networks as identified by our Youth Engagement team. Additionally, posters were physically visible in the participating community centres in which focus groups were conducted and youth leads shared the posters within their networks.

| Youth Engagement
As this project was youth-led, the research team was comprised solely of youth, with experienced researchers who acted as consultants. Governed by the McCain Model, multiple levels of Youth Engagement were available, including high engagement for a small number of youth (youth leads) and more limited, short-term engagement for a larger number of youth (youth research assistants, youth RAs) (see Table 1). Over the course of the project, there were four youth leads who led the different phases of the project: tool development, data collection, data analysis and manuscript writing.
These were hired CAMH research staff who underwent necessary research training. Additionally, interested members of NYAC were recruited as youth RAs, who received honoraria for their contributions. Youth leads and RAs self-identified as having experience with mental health difficulties, which was required to ensure that they had personal knowledge of challenges associated with mental health, were aware of the mental health system, and could use these experiences to inform their work.
Youth RAs from each community facilitated the focus group consultations to ensure that all facilitators had prior knowledge of the local context and resources. Training was provided to all youth RAs, which included the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS-2 23 ) ethics training, as well as a remotely delivered ethics training co-led by youth and researchers, attendance of two focus group training sessions, and regular phone and email check-ins with CAMH youth leads.

| Setting
Host agencies were identified in each community by the youth RA, with support from the youth lead. Youth RAs were asked to identify community organizations that were both accessible and offered a youth-friendly environment. The host organizations provided the physical space and clinical staff support. Each two-hour focus group consisted of a moderated discussion of the Wellness Quest tool using a semi-structured interview guide.

TA B L E 1 Description of Youth Engagement during all three phases of the project
After 'ice breaker' questions, the conversation focused on the content, presentation and utility of the tool specific to the community and province. Participants received honoraria for their participation.
Focus groups were audio-recorded.

| Online survey
An anonymous survey was hosted online through the REDCap 24 data capture system and included multiple choice and short answer questions about the Wellness Quest tool, taking approximately an hour to complete.
The first page of the survey provided an informed consent form, followed by a short demographics questionnaire. The survey questions focused on the content, presentation and utility of the tool. At the end of the survey, the participant was redirected to an unlinked information form, where they could provide their personal information to enter an optional draw for a prize.

| Data management
In order to protect participants' confidentiality, participants were asked not to use names during the recorded period of the focus groups. The recording was securely transferred to the youth lead immediately following the consultation and stored on encrypted CAMH computers. No names were attached to the online survey.
The survey was hosted on secure CAMH servers.

| Support for youth
Youth RAs were trained for this role and continuously supported by CAMH research staff, including remote attendance of the focus groups by a CAMH youth lead. The host organization had mental health support available during the focus groups and immediately after. A debrief after the focus groups addressed any issues or questions that may have arisen for youth RAs during the focus group.
Participants were provided with contact information for the youth lead and senior researcher, as well as a list of local mental health resources. Host organizations and participants had the option to receive a copy of the final report of the manuscript and the completed version of the Wellness Quest tool to ensure transparency.

| Data analysis
Youth voices guided the analysis, as the data were analysed by a youth lead in consultation with other youth. The youth lead helped prioritize youth needs and relevancy to youth. Focus group interviews were transcribed verbatim, imported into NVivo (12 Pro) and analysed by a youth lead using qualitative thematic analysis and an inductive approach to identify common themes. A youth lead continually read the transcripts to become familiar with the content, enabling insight into initial thoughts and emerging themes within focus groups. The words and sentences that conveyed similar meanings were identified and labelled as codes, allowing segments of text to be interpreted and categorized. 25 Following coding, categories were developed and discussed to develop broader overarching themes. Regular youth lead debriefs with experienced researchers ensured research methodology was followed and data analysis and codes were objective. A second coder used the codebook to code two transcripts to ensure rigour and to confirm the consistency of the analysis. 26 Cohen's Kappa of inter-rater reliability was 0.80. Differences in coding were discussed between the two coders, and agreement was reached in all instances. The results of the survey were summarized using descriptive statistics.  Table 2. Themes related to the content, presentation and utility of the Wellness Quest tool are presented in Figure 1.

| Purpose of the tool
Participants felt the Wellness Quest tool could help first-time mental health service users to better understand and access the system.

| Content
Positive feedback was provided on the content of the Wellness Quest tool throughout all of the interviews and in the survey data (

| Medication
Participants recommended that a section be added about common medications used to treat mental health difficulties. They also recommended noting that medication is not the only treatment option and that those who are on medication might consider combining it with psychotherapy to see better, longer lasting improvements to their mental health.

| Self-help section
Another recommended addition was a section containing information around self-help tools that youth could use to self-regulate on a regular basis or in moments in which it is not possible to access services. Common suggestions included coping skills, helplines, reaching out to social support, and suggestions for light-hearted activities.
[Participant 5]: Creating a self-care box, a mental wellness box, so these are things that help you cope or help you manage.

| Confidentiality and parental involvement
Participants requested information about their rights as youth when accessing a service, as well as confidentiality and situations that lead to a breach of confidentiality. Participants also felt that youth should be informed that helplines are available for those who prefer anonymity when seeking support. Participants recommended that a disclaimer be placed at the beginning of the tool stating that this resource can be accessed discreetly so as to maintain privacy.
[ Where would you like to use the tool for the first time?
Queer and Questioning) youth. They further suggested adding a glossary to describe clinical terms.

Language and wording
Participants throughout the focus groups and survey stated that the language used in the checklist and guide was inclusive, professional, easy to understand and to the point. Participants also shared posi- Proposals were made to re-word specific phrases that came across as 'harsh'. For instance, with the phrase 'someone who can understand your issues', the words 'your issues' could be changed to 'your situation'. This opinion was also expressed in the survey. Participants also believed that some of the language used in the guide was too informal, such as the statement 'when you feel like crap'. While this language was intentionally used in an attempt to be relatable to youth, participants felt that the language should be kept professional and formal, including using fewer exclamation points.

Graphic design
Words like 'colourful,' 'brighter,' 'bolder' and 'more engaging' were frequently used to describe what the tool should look like in order to be youth-friendly and accessible. Some participants recommended using a fictional character to guide the individual through the 'quest', especially for younger users of the tool. These suggestions were also supported by survey results. However, it was suggested that there should also be an option of a simpler format of the tool, for older users of the tool or those who prefer this for accommodation and accessibility reasons. [

| Structure
Length and structure Multiple participants described the guide as being too wordy.
However, other participants stated that the length was not a problem as all the information was useful and users only had to read sections relevant to them. Structurally, participants felt that the guide would benefit from an index and separate sections to allow readers to access the specific sections they need and avoid feeling overwhelmed by the length of the tool. They also felt that each new section should start with a short description of the content.

Scaling of the checklist
The checklist helps young people identify relevant types of services, potential partners in treatment, and accessibility concerns that are The majority of participants in the focus group and the survey were satisfied with the use of this question and scale as they found it straightforward and easy to use.
[ Participant 14]: I just want to say, compared to other questionnaires I filled out, this is probably the simplest one, and it was really easy for me to fill out, and very quick. And it wasn't very ambiguous either… However, a few participants suggested it would be beneficial to use 'yes/no' responses.

| Format
Participants wanted both a physical copy and online version of the tool. Participants recommended having a physical copy available, especially in more remote areas where not everyone may have access to the internet or in areas/agencies accessible for streetinvolved youth. They suggested that the printed tool be shorter and more condensed, such as in a pamphlet format. They suggested that this version include quick and important information, with web-links and scan codes allowing readers to access more material online.

| Accessing the tool
Youth in both the qualitative and quantitative components reported that social media advertising could be used to rapidly increase awareness of the tool. Survey results showed that the most popular recommended platforms were Facebook, Instagram, YouTube and Twitter.
Participants suggested that the tool may be able to work hand-in-

| Stigma as a barrier
A few participants mentioned stigma around others seeing them accessing the tool and would prefer to access the tool privately.
This opinion was seen in both the focus groups and the survey (see Table 3). However, participants believed that more people should be aware of this tool and in turn, this awareness and education about mental health could help reduce stigma.
[  Young people want to be actively involved in the health-care decision-making process and report feeling more in control when they are able to voice their opinions and be heard. 32 However, service users are rarely involved in making decisions when accessing services, and their preferences and goals may be disregarded. 33,34 Interventions that help youth be actively involved in their care show improved quality of life and satisfaction, which in turn may promote better service engagement. 35 Improving mental health literacy may improve service utilization and mental health. 8,36,37 Young people also express the unmet need for developmentally appropriate, relevant and accurate information to enable them to make informed decisions about their mental health. 38,39 Tools such as the Wellness Quest are specifically designed to promote help-seeking in youth, not only by increasing awareness of services available to young people, but also by providing information on barriers to help-seeking.

| D ISCUSS I ON
Along with increasing mental health literacy, the Wellness Quest tool may facilitate help-seeking and equip youth with the knowledge to make informed decisions and advocate for their own mental health.

| Youth Engagement
Youth Engagement is increasingly being seen as vital in creating supportive and relevant services for young people and improving the ecological validity of the research. [40][41][42][43] This project successfully engaged young people at every step, from defining the central need and designing the tool to evaluating the tool. Youth were engaged in a variety of ways, based on their level of interest, availability, commitment and skill. 16,43 Youth RAs were able to be well trained, identify host agencies within their communities, and support a robust recruitment strategy using their networks; this greatly facilitated recruitment success for a national project. Engaged youth gained knowledge and skills in research, project management, facilitation and tool development. The positive study results may reflect the fact that the tool was designed by youth, for youth, to help to ensure that it is accessible, engaging and non-stigmatizing for young people.
However, our successes were not without challenges. The project involved a large time commitment for youth. This highlights the importance of compensating youth for their work and ensuring that their engagement is helping them meet their personal goals. The youth RA onboarding process highlighted the lack of standardized research orientation for youth RAs. The training currently available was not the most appropriate or feasible for youth partners in this role. In the future, adaptations are needed to best suit the needs of youth researchers. Finally, a protocol deviation occurred in the age range of youth recruited in the study, affecting one participant.
The Research Ethics Board approved the deviation and the team has worked together to ensure that it does not occur in future studies.

| Limitations
Some limitations are to be noted. During the focus groups, general discussion about opinions on mental health and services was initiated as an 'ice breaker'. However, in some instances, these conversations were lengthy. While this may have helped increase rapport, it may have also interfered with discussions of the tool. Additionally, recruitment was dependent on youth RAs' connections and may have been limited to their community network. Furthermore, it was assumed that participants did read over the tool before attending the consultation; however, this was not verified and may have hindered the collection of more detailed feedback.
It should be noted that this study captures a particular section of youth experiences. Participants were mostly English-speaking, largely resided in urban areas and had internet access. The survey