What Works and Best Practice!
Who was there?
We facilitated our first workshop at the Big Emerging Minds Summit! Lead coordinator, Nicola Cogan, and coordinators Tom Sharpe and Molly Murray, facilitated the workshop. Attendees included professional practitioners, clinicians, professionals from voluntary and community sectors, policymakers, funders, and mental health researchers - all passionate about mental health research in children and young people.
What was our focus?
Our key aims for this workshop were to:
Raise awareness of 'best practice' for engaging young people with lived experience, as co-partners in the research process
Discuss the use of participatory research methods involving young people as peer researchers
Consider 'safe practice': thinking of the role of self-stigma and how best to work with it
Discuss transferable insights that can be applied to a range of academic, practice and policy contexts
What did we do?
After a brief introduction and highlighting our aims for the workshop, we wanted to hear some ideas from the attendees on what comes to mind when they think of mental health and young people. This is a word cloud that was created using Slido!
You can see that empowering young people to have their voices and opinions heard, is at the core of these results!
The need to engage young people with lived experience in mental health research
Self-stigma occurs when people internalise public stigma. This is where negative attitudes and stereotypes are held against people with mental illnesses. Common stereotypes include the belief that people with mental illnesses are dangerous, unpredictable, childish and incompetent. Stereotypes can lead to prejudices including fear, anger and pity; and discrimination, such as the avoidance of people with mental illnesses. When this is internalised by individuals with mental illnesses, they may experience low self-esteem, low self-efficacy and the 'why try' effect. Much of what is understood about self-stigma is related to adults' experiences. Currently, little is known about the unique experiences and perspectives of young people.
Involving children and young people in mental health research is becoming more widely valued and recognised as essential to ensuring that research is relevant and responsive to their needs. Young people are eager and capable of being involved in all stages of the research process yet little information is available on best practices for their involvement in mental health research. This is particularly true for younger children who have tended to be more the subject of research rather than active participants or partners in research.
How might challenges to youth participation in research be overcome?
One possible approach is to adopt participatory methods that include children and young people in the research process, from planning and developing research questions to disseminating research findings.
What are participatory research methods?
Participatory research methods facilitate the co-construction of knowledge via collaborative processes between the participants of the research and the researcher.
What do we mean by peer research?
Peer researchers (also referred to as 'community researchers') use their lived experience and understanding of social or geographical communities to help generate information about their peers for research purposes.
The value of lived experience
Promotes insight from their experiential knowledge and inside understanding of mental health issues
Enhances the richness and nuance of the research
Empowers young people to affect positive change by not only participating in research but also leading research too
Potentially enables young people to gain transferable skills and gain confidence
Helps minimise the power imbalances between researchers and participants
Reduces bias and promotes improved understanding of young people's mental health experiences to inform policy and practice
Increases the sensitivity of the research process to the needs of the participants
Promotes insightful research questions
Encourages openness and honesty for participants, in relation to their responses when working with peer researchers
Engaging with young people: best practices and safe practices
Before discussing and exploring how to engage with young people, we posed the question to workshop attendees about how they engage with young people. These are the results!
During the workshop, we discussed best and safe practice, for engaging young people as peer researchers. We highlighted previous research and themes that emerged in a knowledge exchange recently conducted with current peer researchers.
Some key learning points are highlighted below!
Building trust, and rapport and cultivating strong relationships
Relationships among peer researchers and the wider research team are absolutely essential and can help challenge power imbalances
This ties in with showing respect to young people and showing a sense of shared power
Show respect to young people
Respect young people’s involvement, input, engagement and opinions - listen to what they have to say
Treat peer researchers as equals within the research team - there should be no 'hierarchy' in any way
Small things such as wearing casual, informal clothes, and using first names, can be largely important and meaningful to young people
Show value to young people
Show young people that you appreciate their time, input and expertise
Make sure expenses and incentives are given and their contributions are always acknowledged
Have a clear, authentic, and meaningful purpose for involving young people
Avoid tokenism by making sure projects are meaningful and involve young people from day one
Ensure that young people feel like their voice is being heard/that they are being listened to
Always ensure young people are given to opportunity to voice their opinion
Involve young people in all stages of the research process - planning from the offset of a project rather than just an after-thought
Understanding the young people you are engaging with
Consider their experience, and the needs and personal barriers that they may face and be mindful of the flexibility that they may need
Understand the developmental stage and needs of children and young people
Understand those that experience the impact of mental illness self-stigma and what this might mean for engaging them in peer research opportunities
Think about how you are promoting opportunities to young people
Promote in the right way that reaches the right young people. For example, by using their platforms, their language and their networks
You want to ‘go the extra mile', so be mindful of diversity among participants and how to engage young people from different backgrounds and ethnicities
Involve enough young people and the right people to truly represent your project
Give choice to young people and ensure flexibility
Where possible adapt to make the experience more comfortable for them. This might mean different working patterns, reasonable and flexible deadlines, alternative communication methods, and different meeting methods (face-to-face vs online; one-to-one vs in groups)
Preferences and reasons will vary among individuals
Always remain open and adaptable to change
Allow young people time to reflect
Support the young people you work with
Consider the impact that involvement in peer research could have on young people – what can you do to support them throughout their time as peer researchers
Share with and update young people on project progress
Be clear and transparent about the impact of their work - young people like to know how they have made an impact
Update peer researchers on what is happening with projects
Make sure that feedback given to peer researchers is meaningful
Peer researchers want to hear more than 'you are doing great'. They want to know what is happening, what the results and outcomes of a project are and what difference they are making
This helps to show value as you care enough to let peer researchers know about these things
Co-production
Our RSIG is still a fairly new Special Interest Research Group to the Emerging Minds research network. So when discussing co-production we shared examples of how we have involved young people with lived experience in the set-up, design and development of our R-SIG.
Co-produced logo
The slide above shows the process of developing the logo for our R-SIG. We wanted to create the logo in a way that would attract the interest of the right people. For us, the 'right people' include children, young people and adolescents. On the left is our first logo. However, following feedback, Molly changed this to something that was more relevant and engaging for the demographic group.
Co-produced video
We also co-produced a video that was created as an introduction to our R-SIG. This highlighted key reasons and drive for our R-SIG, key aims, and an invitation for people to get in contact and to get involved with our group.
Co-produced research recruitment poster
Molly co-produced a recruitment poster for a research study conducted by a PhD student, Rachel Taylor. This was co-produced with young people with lived experience of mental illness self-stigma. With this, there were some key considerations around designing the poster in such a way that it would not reinforce any self-stigmatising attitudes with the ‘thoughts’ that were placed in the speech bubbles. The young people provided input regarding what they wanted to see on the poster. For example, thought bubbles were used rather than speech bubbles because people who experience self-stigma generally have thoughts and tend to be less likely to actually talk about their experience openly with other people.
Co-produced infographic
Another resource being co-produced with peer researchers is an infographic on best practices for engaging young people with lived experiences of self-stigma as peer researchers. This was created from information gathered during an informal discussion with peer researchers. Examples of the discussion points during this meeting include:
what is important to peer researchers
motivators and facilitators to becoming a peer researcher
barriers to becoming a peer researcher
what works well in peer research,
what doesn’t work so well in peer research
becoming involved in peer research as someone with lived experience of self-stigma.
On the left are key themes highlighted during the knowledge exchange. You can see that some of these overlap with findings from the Common Room North. However, there are also some additional themes such as 'Practical Skills and Gaining Experience' and concepts surrounding self-stigma such as 'Confidence' and 'Self-perception'.
This infographic is still in progress. So, while you can only see an outline of this, we will be sharing the final infographic on our website and through our social media. So please keep an eye out for this!
Co-produced article for education today
Most recently, we have co-produced an article for Education Today Australia! We did this by building on the previous Education Today article by Rachel Taylor and Colleagues. View these articles by clicking the links below!
Take Home Messages!
Some take-home messages from our workshop:
Being able to ensure that stigma does not prevent children and young people from engaging in research involves recognising that it exists and seeking to challenge it
More work is needed to support children and young people's mental health in the changing and unique pressures of their lived experiences. This involved awareness and consideration of diverse views and understandings of mental health and the subsequent impacts of stigma.
Seeking the perspectives of young people of colour, gender identity diversity, LGBT+ communities and those with diverse religious or spiritual beliefs are just some of the ways to help broaden awareness and understanding
Safely and meaningfully engaging young people in the research process is the key to supporting children and young people to lead such work moving forward
Next Steps for you!
Get in touch, read our blogs, tweet us, and join us!
Next Steps for our RISG!
Our RSIG has been running for around 8 months. We hope that in the future we can take our group and our research further.
Q & A Session
At the end of our workshop, we had a Q and A Session with attendees. If you have any questions, put them in the comments!
References
Angermeyer, M. C., Holzinger, A., & Matschinger, H. (2010). Emotional reactions to people with mental illness. Epidemiology and Psychiatric Sciences, 19(1), 26–32. https://doi.org/10.1017/S1121189X00001573
Australian Institute of Health and Welfare (2022). Australia’s health 2022: in brief, catalogue number AUS 241. Australia’s health series number 18, AIHW, Australian Government.
Cogan, N. A., Schwannauer, M., & Harper, S. (2019). Recovery and self-identity development following a first episode of psychosis. Journal of Public Mental Health, 18(3), 169–179. https://doi.org/10.1108/JPMH-01-2019-0013
Corrigan, P. W., & Rao, D. (2012). On the self-stigma of mental illness: Stages, disclosure, and strategies for change. The Canadian Journal of Psychiatry, 57(8), 464–469. https://doi.org/10.1177/070674371205700804
Corrigan, P. W., Bink, A. B., Schmidt, A., Jones, N., & Rüsch, N. (2016). What is the impact of self-stigma? Loss of self-respect and the “why try” effect. Journal of Mental Health, 25(1), 10–15. https://doi.org/10.3109/09638237.2015.1021902
Dewa, L. H., Lawrence?Jones, A., Crandell, C., Jaques, J., Pickles, K., Lavelle, M., ... & Aylin, P. (2021). Reflections, impact and recommendations of a co-produced qualitative study with young people who have experience of mental health difficulties. Health Expectations, 24, 134–146. https://doi.org/10.1111/hex.13088
Faithfull, S., Brophy, L., Pennell, K., & Simmons, M. B. (2019). Barriers and enablers to meaningful youth participation in mental health research: qualitative interviews with youth mental health researchers. Journal of Mental Health, 28(1), 56–63.
Gärtner, L., Asbrock, F., Euteneuer, F., Rief, W., & Salzmann, S. (2022). Self-stigma among people with mental health problems in terms of warmth and competence. Frontiers in Psychology, 13. https://doi.org/10.3389/fpsyg.2022.877491
MacIntyre, G., Cogan, N., Stewart, A., Quinn, N., Rowe, M., O’Connell, M., Easton, D., Hamill, L., Igoe, M., Johnston, G., McFadden, A., & Robinson, J. (2019). Understanding citizenship within a health and social care context in Scotland using community based participatory research methods: Sage Methods Case Study. SAGE. Advance online publication. https://doi.org/10.4135/9781526484918
Sharpe, T., Murray, M., Taylor, R., Corrigan, P., & Cogan, N. (2022). Engaging Young People in Mental Health Research - Addressing Stigma. Education Today (2022). https://www.educationtoday.com.au/news-detail/Engaging-Young-People-in-Mental-Health-Research---Addressing-Stigma-5757
Taylor, R., Johnson, R., Hunter, S. C., Cogan, N., & Corrigan, P. (2022). Is it" OK to not be OK" at school? Mental illness stigma. Education Today (2022). https://www.educationtoday.com.au/news-detail/Is-it--5509
The Common Room (2021). https://irpcdn.multiscreensite.com/29f8e96e/files/uploaded/Ethics%20in%20YP%20participation%20and %20research%20CommonRoom.pdf
The Health Foundation (2022). https://www.health.org.uk/news-and-comment/charts-andinfographics/children-and-young-people-s-mental-
health#:~:text=Among%20those%20aged%206%20to,mental%20health%20condition%20in%202021.
You can also download our Summit workshop slides and presentation!
Comments