Table 2.
Recommendations
| Study phase | Recommendations |
|---|---|
| Phase 1 |
Preparation: Choose an appropriate level of participation before the beginning of the study Dennehy et al. (2019), Brady et al. (2018) Plan the study design as demand-driven as possible Mawn et al. (2015), Schilling et al. (2020), Lincoln et al. (2015) Share clearly stated aims with all members including role assignment and task explanation Dunn (2017), Dewa et al. (2021) Plan primary outcomes: Which aspects will be addressed by PPI members? How will their input be recorded? (Review based) Working with a PPI guideline, as well as train the research team on how to interact with youth (Youth council) Planning: Provide clear and accessible information on the purpose and implementation of the study Walker et al. (2021) Explain how PPI is integrated into the research design Walker et al. (2021) Prepare study information and informed consent for parents in plain language, respectively native language when recruiting specific ethnicities or otherwise needed (Parents Advisory Board) Enable skill based mentoring, training or supervision for all members of the team Mawn et al. (2015), Warner et al. (2021) Consider the involvement of a PPI facilitator to support moderation, methods anddissemination Pfister et al. (2021), Walker et al. (2021) Plan sufficient time buffers for possible delays Pfister et al. (2021) Motivate each other if there are barriers at first glance Warner et al. (2021) Utilize youth friendly locations Mawn et al. (2015) Organize refreshments to aid concentration and to provide a comfortable environment Mawn et al. (2015), Dewa et al. (2021) Use agendas for each meeting, so everyone has a timeline; for young children with pictures instead of phrases (Children’s Council) Budget: Calculate an adequate budget (considering travel cost, mentoring, training sessions), e.g., using the INVOLVE calculator Mawn et al. (2015), Pfister et al. (2021), Dewa et al. (2021) Include team building activities in the research budget Mawn et al. (2015), Pfister et al. (2021) |
| Phase 2 |
R ecruitment: Consider age-, gender, and cultural specificities when recruiting Grant et al. (2020) Recruiting in schools, as early as possible in research process is beneficial and is more likely to result in a representative sample Dennehy et al. (2019) Put up posters at school so that children and adolescents can inform themselves and make voluntary decisions to participate (Children’s Council) Recruitment should also be carried out in youth groups, social media and youth clubs (Youth council) On-going recruitment is necessary, to minimize disruption caused by the complex and dynamic lives of young people Mawn et al. (2015) Implementation (of PPI Groups): Meet in a place and time that is appropriate for young people Dewa et al. (2021) It is important to try and dissociate the sessions with the school itself Grant et al. (2020) Avoid meetings on weekends and school holidays (Children’s Council) Create an informal environment as well as a safe space for open discussions Juan et al. (2021), Miller et al. (2021), Dewa et al. (2021) Implement a rights-based framework to strengthen young people's involvement Dennehy et al. (2019) Potential honorary research status could be given to the co-researchers Dewa et al. (2021) Consider young people to co-design and co-deliver trainings to co-researchers to further reduce power restraints Dewa et al. (2021) Conduct a small on-going advisory group which is fluid and flexible Halsall et al. (2021), Dennehy et al. (2019), Dunn (2017), Grant et al. (2020), Juan et al. (2021), Kendal et al. (2017), Brady et al. (2018) Fixed group of participants who commit to come to meetings and participate in research (Youth Council) If a greater number of participants is needed, communicate it early Grant et al. (2020) |
| Phase 3 |
F orms of Communication: Involve young people in determining the best methods of communication and avoid pressuring them to participate Brady et al. (2018) Provide flexibility in communication methods such as email, telephone, and face-to-face interactions Walker et al. (2021) Maintain clear channels of communication during funding gaps to plan ahead and explore innovative ways to continue collaboration Walker et al. (2021), Miller et al. (2021) Dedicate time for team-building activities and breaks to foster a positive and interactive atmosphere Dewa et al. (2021) Ensure that young people's input is dynamic, flexible, and integrated into everyday practices and systems Walker et al. (2021), Brady et al. (2018) Use participatory enabling techniques to encourage open and honest discussions (Dennehy et al. (2019) Regularly check-in with individuals to ensure their involvement is mutually beneficial Walker et al. (2021) End meetings by seeking feedback, addressing misunderstandings, and answering questions (Children’s Council) Evaluate meetings using visual analogue scales (Children’s Council) Communicate in simple and clear language while maintaining seriousness and relevance to the research (Youth Council) Data Acquisition: Foster shared motivation to co-produce meaningful and accessible findings Walker et al. (2021) Allow young members to lead meetings, make decisions through consensus, and determine priorities Mawn et al. (2015) Generate trustworthy findings that accurately reflect young people's views without exerting undue power Kendal et al. (2017), Pullmann et al. (2013) Build rapport by establishing existing relationships within the group Grant et al. (2020) Take observational notes to analyze the influence of research development Warner et al. (2021) Specificities Mental Health/Disorders: Provide appropriate clinical support for young people with mental health difficulties and involve multiple co-researchers to account for potential drop-outs Dewa et al. (2021) as well as other difficulties (Parents Advisory Board) Offer continuous support for psychological distress throughout the research process (Youth Council) Encourage open discussions about mental health stigma and respect diverse perspectives Lincoln et al. (2015) Address challenges when forming advisory boards around mental health, such as stigma, trauma, mistrust, scheduling, confidentiality, and cultural norms Miller et al. (2021) Ensure confidentiality regarding personal experience reports (Youth Council) Reassure young people about the quality and safety of digital tools for mental health Grant et al., (2020), Kendal et al. (2017) Incorporate peer workers in mental health services to support the "Experts by Experience" approach Schilling et al. (2020) Consider the remission phase as a more suitable time for participation than the acute phase of any mental disorder (Children’s Council; Parents Advisory Board) |
| Phase 4 |
Finalizing Study (prepare data, publications and dissemination): Maintain a dialogue with school students to increase interest and awareness of (mental) health and epidemiological research Grant et al. (2020) Emphasize transparency in the research process to make young people feel respected and engaged (Youth council) Allow PPI group members to take ownership by participating in the dissemination of findings through conferences, podcasts, blog posts, and plain language summaries Walker et al. (2021) Address the ethical issue of participant anonymity versus authorship opportunities early in the process Halsall et al. (2021) Evaluation: Focus future research on developing a measure of youth engagement Grant et al. (2020), Pullmann et al. (2013) Conduct longer follow-up periods to study long-lasting effects on adolescents and program recipients Warner et al. (2021), Schilling et al. (2020) Set an end point for inclusion in the research project, avoiding unnecessarily prolonged engagement (Youth Council) |
A (bold) = Parents Advisory Board; b (underlined) = Children’s Council Mental Health; c (italic) = Youth’s Council; d (small caps) = Review based;