‘It reshaped how I will do research’: A qualitative exploration of team members’ experiences with youth and family engagement in a randomized controlled trial

Abstract Background Engaging youth and family members as active partners in research and service design offers great promise in improving projects. In youth mental health, recent research has highlighted the value of youth and family engagement. However, research on the experience and impacts of engagement is sparse. Objective This study explores the project team's experience of youth and family engagement in the design and development of the YouthCan IMPACT randomized controlled trial and clinical service pathway design. Design Qualitative data collected using semi‐structured interviews and a focus group as part of the YouthCan IMPACT clinical trial were analysed to understand the impacts of engagement. Twenty‐eight team members were interviewed, including youth and family members. A qualitative content analysis was conducted, with a member checking process. Results Team members reported facilitators, barriers and impacts of youth and family engagement. Facilitators included a safe environment and strong procedures conducive to inclusion in co‐design. Barriers included logistical, structural and institutional constraints. Overall, team members found youth and family engagement to be valuable and to positively impact the research and service design process. Discussion and Conclusions Youth and family engagement played a critical role in research and clinical service pathway design. The team found that their involvement improved the quality of the research and service pathway through sustained and multifaceted engagement. Facilitators and barriers to engagement may serve to guide future engagement initiatives. Future research should evaluate the long‐term impact of early engagement and further focus on family engagement. Patient/Public Contribution Youth and family members were engaged in the data analysis and interpretation process.


| INTRODUC TI ON
There is a growing awareness of the need to understand youth and family perspectives in research and service design. [1][2][3] In the health sphere, the last decade has demonstrated a shift towards engaging people with lived experience in research and service development.
While this is true across health disciplines, youth mental health research has also seen an increase in engagement. 4 Youth have unique needs and face specific barriers in mental health and substance use service access and treatment. In Canada, the response thus far to youth mental health and substance use challenges has been largely considered inadequate, where youth face barriers such as stigma and significant delays in accessing care. 2,5,6 To better address service access barriers, youth-serving agencies in Canada and worldwide are collaborating with youth and family members in the design and delivery of services, while some research groups are also engaging youth and family members in research evaluating such services. 4,7,8 Youth and family engagement in research and service design and delivery involves incorporating a broad range of youth and family perspectives throughout the initiative to ensure full partnership. 7,9 Engagement shifts service users from being passive participants to active partners in research and service design, hopefully resulting in mutual benefits. Engaged service users have reported empowerment and skill-building, 10 while researchers have reported enhanced research innovation. 11 Given that the majority of mental health and substance use problems develop before the age of 24, 12 and considering the value of service user engagement, 13,14 integrating youth perspectives is critical to improving the quality of care. Since family members can have an important role in youth's service-seeking decisions, behaviours and outcomes, they should also be engaged in youth mental health service and research design. 15 Recent research highlights the importance of, and ways to incorporate, youth engagement in research and service design. [16][17][18] For instance, a scoping review 16 highlights the importance of incorporating youth voices throughout service design and delivery as a core value in youth-friendly services. Although a small body of research has begun to illustrate methods of engaging service users as active partners in research, 14,19 there is a dearth of research on the impacts of youth and family engagement. There is a particular paucity of literature regarding family engagement. Furthermore, youth and family perspectives are still rarely integrated throughout service planning, development and research. Without robust research demonstrating the value of engagement, clinical programs and research project teams may overlook youth and family engagement and thereby miss the benefits that engagement can provide. 2,20 Integrated youth service hubs (IYSHs) are a growing model of youth care that aims to increase service access and reduce system fragmentation through a 'one-stop-shop' approach. 4,8 They do so through a variety of core principles, including rapid access, evidence-informed approaches and a concerted focus on youth and family engagement in service design and evaluation. 4,8,9 Examples of emerging IYSH models around the world include ACCESS Open Minds across Canada, 21 YouthCan IMPACT in Toronto, Ontario, Canada, 9 Youth Wellness Hubs Ontario in Ontario, Canada, 22 Foundry in British Columbia, 23 Jigsaw in Ireland 24 and Headspace in Australia. 25 Studies evaluating IYSHs illustrate benefits such as a reduction in distress, self-reported mental health improvements and high levels of satisfaction. 8 However, experts have identified a need for more rigorous research on engagement. 4,8,18,26,27 The YouthCan IMPACT project in Toronto, Canada, consists of the development and evaluation of an IYSH model incorporating youth-friendly components, such as rapid service access, evidencebased interventions and system navigation. 28 To reflect youth and family expertise at all levels of service and research design and ensure effective partnership and collaboration, the YouthCan IMPACT team created a governance model in which youth and family members with lived and living expertise are part of the core decisionmaking body and working groups ( Figure 1). 9 Youth and family expert advisory groups were also created, to integrate feedback from a broader group of youth and family members.
A recent study evaluated the start-up process of YouthCan IMPACT, highlighting barriers and facilitators to implementation. 29 However, as limited evidence exists regarding the impact of youth engagement in service design-and even less so on family engagementthe impact of engagement in the project remains unclear. 4 In the McCain Model of Youth Engagement, 7 which was codeveloped by youth and researchers, youth can be engaged in a variety of ways. These methods range from low to high commitment, but all aim to bring a broad range of skills to a project and promote youth decision-making power. 7 The model embodies core principles of authentic decision making (e.g., active participation in research decision making), flexibility (e.g., around their role), informal and formal mentorship (e.g., around research or policy) and reciprocal learning, where both youth and researchers are considered experts. The McCain Model was implemented in YouthCan IMPACT to facilitate authentic youth engagement. The general principles of the model were also extended to guide family engagement.
This study explores the team's experience of youth and family engagement in the design and development of the YouthCan IMPACT randomized controlled trial and clinical service pathway.

| The YouthCan IMPACT project
The YouthCan IMPACT project is a community-based service development project and clinical trial that created an integrated collaborative care team model of service delivery in Toronto, Ontario, Canada. 28 The project began in 2015 as a patient-oriented randomized con-

| Study data and setting
This study is a secondary of qualitative interview data from the YouthCan IMPACT formative evaluation, 29 to understand the impact of youth and family engagement. The formative evaluation was conducted during the start-up phase of the project to understand the team's experience of the service development, research design and implementation processes. The study received ethical approval from the CAMH Research Ethics Board.

| Sample
The sample consisted of 28 YouthCan IMPACT project team members who consented to be interviewed. Team members were principal investigators, project coordinators, managers, clinicians, community leads and youth and family leads. Study participants in the randomized controlled trial were not interviewed. The interviewer and lead analyst were not interviewed in the study and were not members of the core research team. Participants were recruited through direct email or in-person invitations. Written informed consent was obtained from participants.

| Data collection
Participants took part in semi-structured interviews and a focus group during the start-up process of YouthCan IMPACT. All interviews were carried out by a research staff member, a medical student at the time.
Interviews were conducted face to face and via telephone. Twenty-two interviews were conducted from August 2016 to April 2017, ranging from approximately 25 minutes to 105 minutes (average 53 minutes).
The 22 interviews consisted of 17 semi-structured interviews with one participant, four semi-structured interviews with two participants and one focus group with four participants. Interview questions were based on the Consolidated Framework for Implementation Research (CFIR), 30 which specifies domains related to implementation success.
The CFIR structure was the focus of the companion manuscript 29 and was not adapted specifically to query about the engagement process.
Questions were further developed through a document review (e.g. meeting minutes). Interviews were recorded, transcribed and entered into NVivo 12. Tracking logs of all scheduled team meetings were reviewed to quantify youth and family attendance.

| Data analysis
Data were analysed using content analysis through a deductive approach. 31 All transcripts were analysed and coded by one member of the research team (NYS). A second coder analysed 20% of the transcripts.
Initial codes were formed though open coding, and then, categories were created from the raw data. The codes and categories were then discussed with another researcher (LDH) to review diverging opinions regarding the categorization of data. 32 While both the interviewer and lead data analyst were supported by a team member who was also a study participant, data were blinded from the analyst and supporter to reduce bias. Following the organization phase, the codes and categories were shown to youth and family consultants within the YouthCan IMPACT engagement initiative for member checking. 33 This ensured that the interpretation reflected youth and family perspectives. The initial codes were revised accordingly. Results were then described by the content of the categories using the deductive approach.

| RE SULTS
For participant characteristics, see Table 1 Tables 3 and 4. Impacts of engagement are shown in Table 5.

| Importance of engagement
Team members who discussed engagement in general, not specific to youth versus family engagement, found engagement important and valuable in terms of early engagement, contributions to the project and efficient decision making. Some team members highlighted the value engagement in initial project development: I think for youth and families that sit there with the people designing the project right from the beginning, it is an amazing idea. It's so critical. Because often, families get thrown in halfway through or at the end and it's kind of just like 'oh how do you think this is?' and 'if you like this?' and it's way too late then. So, they were actually part of the design process, which I think was fantastic.

TA B L E 1 Characteristics of study participants
Female 25

Role
Community clinical or service partner 8 Principle or co-investigator 5 Research manager or coordinator 2

Community manager 5
Youth and family 3

Community lead 3
Other collaborative staff 2 Some team members cited inclusivity; they found that it was a non-judgemental, safe, friendly and youth-friendly space. A few participants remarked on youth and family-friendly language as an essential component of engagement that fostered a safe space.
Notably, the presence of youth and family in the research setting was seen to create a safer space for better discussions among all Note: A total of 7 youth and 2 family members were engaged during this time period. In addition to these meetings, multiple youth advisory and family advisory meetings were held. Transparency, honesty and trust were also reported contributing to the positive relationships. One team member commented on the progressive growth of their relationship with the youth and family engaged: There were a few lunches that we did together as a team, which I think broke the ice; which was great taking out sort of the boardroom or the office sort of community to a restaurant or just having lunch. Just getting to know each other.
[…] I think relationships are key, and that allows you to be more honest, which has been our model.  Lastly, one team member expressed a busy schedule as a barrier: There is just so much going on. It's interesting just to see how many different things can happen at once.
And that's not necessarily a good thing, it's just incredibly busy.

(Participant H)
Overall, general feedback from team members supported the importance of youth and family engagement while highlighting both facilitators and barriers to successful engagement.

| Youth engagement is valuable
Similar to discussions around engagement in general, all team members who discussed youth engagement in particular found value in the youth contributions to the project and the impact of youth engagement on researchers. Almost all team members reported youth engagement as improving the project. Team members found that youth provide various levels of feedback and active participation, which was valued. One team member commented that 'actually having youth to voice it when we're making those decisions, as opposed to saying "this is what we heard from youth in our reports" has been really, really helpful. I think their input has been invaluable'.
Youth were also seen as having a positive impact on team members. One team member expressed the impact youth had on their research career: Having the youth involved and their input into everything has been a fantastic experience for me. (…) And their participation has made the project 10 times

| Barriers to youth engagement
Team members identified barriers in the earlier stages of youth engagement, such as logistical barriers, lack of continuity, the need for stronger supports in earlier stages and resistance to change. Team members suggested furthering the reach of recruitment to include youth with no experience in research and service design.
One team member suggested: …there is always space to make more room for the family engagement aspect of it. I know the emphasis is lot on the youth, and the family sometimes tend to be forgotten. So, I'm very happy that we have a place of voice at the core team to make sure that we don't forget families. I find that in the recovery process, it's 'together as one' that we get the best outcome, right?

| Summary
This study explored the experiences of YouthCan IMPACT team members with youth and family engagement in the design and development of integrated services and a related research project.
Participants strongly endorsed the value of youth and family engagement. We draw on the results of our interviews to illustrate general, youth-specific and family-specific engagement experiences. Broadly,

| Comparison with existing literature
The work environment plays a critical role in fostering trusting and collaborative relationships among inter-professional teams. 34 Honesty and trust were seen as key to building team relationships in this study, as well as earlier studies on youth engagement, 35  Several studies have outlined potential barriers to youth engagement, such as limited practical resources and funding. 40

| Limitations
This study has several limitations. The study was limited to team members on the YouthCan IMPACT project; therefore, transferability is limited. The small sample size, especially of youth and family participants, is another limitation. Additionally, as this study was a secondary analysis of existing data initially collected to understand the start-up process of the project as a whole, it was not directly designed to evaluate the benefits and barriers to youth and family engagement, which limits the study to an exploratory design. 47 However, given the paucity of research on the impacts and experience of youth and family engagement in research and service design from diverse perspectives, this study provides a rich description of a relatively uncharted area. This study is limited to the start-up phase of the YouthCan IMPACT project; as the team has learned from their experience, engagement has evolved, and improvements have been made.

| CON CLUS ION
Youth and family engagement are a valuable and impactful process that plays a critical role in research and clinical service pathway design. This study demonstrates the positive experience of youth and family engagement in the YouthCan IMPACT project, while revealing potential barriers teams may face. When teams make the sustained effort to implement engagement, research and service design is improved. Future research should evaluate the outcomes of youth and family engagement, such as the long-term impact of early engagement in research and service design, and further focus on family engagement.

| DATA S HARING S TATEMENT
The data that support the findings of this study are available from the corresponding author upon reasonable request.

ACK N OWLED G EM ENTS
The authors thank the youth members of the CAMH Youth Advisory Initiative for their contributions to their project. The authors also thank Ayah Ellithy for supporting the analyses.

CO N FLI C T O F I NTE R E S T
The authors declare no conflicts of interest.