|
Methods
| After giving informed consent, the advisors discussed their experiences and knowledge of peer support via teleconference with CADTH researchers and in email communication. Four individual teleconference meetings took place at 2 different time points. First, during protocol development, 2 youth with lived experience of peer support were invited as advisors to comment and provide feedback on: Second, once preliminary findings were available, 2 youth with lived experience of peer support were invited as advisors to explore their perceptions of key findings, including if the findings were understandable and if they reflected personal experiences or understandings.An honorarium was offered to advisors for participating in a teleconference and to review a summary of their discussion. All were also invited to provide stakeholder feedback on the draft of the full report. | Peer Support Youth Advisor Engagement Methods |
|
Engagement results
| The research team heard how peer support appeals to youth for many reasons, mainly, advisors reported that it offers a convenient, low-barrier, low-commitment service. According to advisors, peer support clients feel safe and comfortable in a peer support environment. The researchers were also made aware of the importance of several clinical effectiveness and safety outcomes. Personal recovery was meaningful to advisors, who emphasized that it is an ongoing process rather than a finite goal that can be achieved: “You’re continuing on your wellness journey, you’re not turning your shoulder to services, you’re not self-sabotaging, you’re making positive movements in your own life.” This goes together with resilience, which an advisor described as the ability to successfully balance work, school, and more, especially during the COVID-19 pandemic. Social outcomes were also said to be valuable; for example, a good support system will work together with peer support to further benefit mental health. Although the relevance of clinical effectiveness of peer support was questioned because it is typically associated with services offered in clinical settings, some advisors conveyed the importance of assessing progress in a measurable way. Advisors were also cautious about how health care resource utilization would be interpreted, explaining that it can be difficult to capture the intent of accessing resources. For example, increased hospitalizations might indicate that someone is proactively reaching out for help or that they are in a crisis. In terms of safety outcomes, stigma was discussed by advisors, who expressed that conversations around boundaries and confidentiality are necessary. They acknowledged that being recognized in a peer support setting (e.g., if individuals who attend the same school and support program recognize each other) or having private information unknowingly being overheard by friends or family (e.g., a discussion is accidentally overheard when accessing virtual peer support at home) is a concern for youth. In addition, advisors expressed that youth with lived experience should be involved in the co-creation of peer support program evaluation strategies: “Anything that deals in mental health needs to be informed or co-created with youth with lived experience.” Information collected for evaluation must also serve a clear purpose that is clearly communicated to youth. For example, not everyone feels comfortable answering questions on demographic data and/or sensitive information truthfully because of privacy concerns. Those involved in conducting evaluations must have a baseline of knowledge of what are the right questions to ask and what is not necessary: “Why is it important for us to know your sexual orientation versus your gender? Does that even matter? Why is it important to know if you’re an immigrant? There has to be a rationale to these questions and that’s how you build EDI into it. If that critical lens isn’t put, it’s not resolving anything and it’s creating further dissonance between research and participants.” Finally, conversations with advisors around equity, diversity, and inclusion helped further inform researchers’ discussions in this review. Advisors spoke about the importance of representation in all aspects of peer support programs. One way this can be achieved is by involving youth with lived experience in the co-design of evaluations so that they can inform programs and ensure that they align with and reflect the needs and identities of their users. Moreover, information collected by evaluations must serve a clear purpose that should be clearly communicated to youth, to prevent further dissonance between evaluators and peer support programs and participants. Sharing this knowledge with the research team allowed them to consider the evidence in the context of the wider experiences of youth who access and who offer peer support services. | Key Messages Summary Discussion Conclusion and Implication for Decision- or Policy-Making |
|
Discussion and conclusions
| The successful involvement of youth advisors in this report is related to several factors. First, they were briefed on the objectives of the project and their role in a preliminary meeting. In addition, a discussion guide was shared with them before the teleconference meeting to ensure that they felt comfortable with the topics and questions that would be discussed. Advisors were also supported by a patient engagement officer, who helped facilitate their participation in the project. Importantly, the research team was receptive to their participation and interested in learning from their experiences and insights. Hearing about service users’ and peer support workers’ experiences with peer support programs was helpful for the research team to understand the processes underlying the use of peer support. For the clinical effectiveness and safety review, perspectives shared helped guide discussions about relevance, meaning, and nuances of the outcomes of interest. Similarly, advisors’ experiences completing and/or developing peer support program evaluation tools provided an understanding of the evaluation strategies from the point of view of individuals being asked to participate in and/or co-create evaluation strategies. | Summary Peer Support Youth Advisor Engagement |
|
Reflections and critical perspective
| The advisors were highly engaged and candid in their conversations with the researchers. They were able to reflect on the questions being asked in advance of the meetings and felt comfortable articulating their thoughts and sharing their perspectives during the teleconference. CADTH researchers were open and inquisitive, and asked thoughtful questions to add context in their analyses of the review findings. The value in this approach — to engage different individuals at different time points in the project — allowed us to capture multiple perspectives and a diversity of needs rather than a singular perspective. The lack of available clinical evidence on peer support effectiveness and safety, especially in a Canadian context, meant there was less information on which advisors could comment. However, advisors were able to reflect on their experiences and share their knowledge and understandings about how outcomes that are relevant to them have been or might be used to assess program effectiveness and safety. Although we learned from a diversity of experience, only 4 individuals were engaged in this project, which is not representative of all youth who experience an inequitable burden of mental health challenges and access to inclusive mental health services and cannot fully capture the diversity of experience of youth who receive or provide peer support. Similarly, youth advisors needed access to a telephone or internet to take part in a scheduled conversation with CADTH; this might have excluded some voices. | Summary of Clinical Evidence |
