24 February 2025. During the third “Mental Health Dialogues” webinar, experts and researchers discussed the importance of including vulnerable groups in research, highlighting challenges and solutions in engaging young people and individuals with lived experience in mental health studies. One of the key insights came from BootStRaP project representative Ella Sheltawy (EYMH), who is actively involved in co-creation and peer-led initiatives. She emphasized the need for meaningful engagement, the importance of valuing lived experience, and the structural changes required to make co-creation a reality in research. Please enjoy our conversation.
Ella, what is the key to significant engagement in research?
I think the key to really meaningful engagement is ensuring you are willing to hear all the voices in the room. This takes a commitment on several levels. Changing attitudes and committing to doing the work with researchers who may not be used to co-creation. They need to be upskilled on the value of this approach and see it in real-time.
Additionally, it is important to involve people with lived experience as early on as possible in the research process – this keeps the research relevant, and people are motivated to work on the issues that affect them.
How can researchers make space for co-creation in a way that allows for real change?
Allowing for meaningful change means factoring in the additional time needed to work with young people and use their input. This also requires additional money—especially if we want young people to be co-creators. Researchers who have not worked in this way before are more willing to listen when they have time and space to do so.
At what stage of the research process young people should be involved?
I think really meaningful input, and seeing young people as active participants, means including them as early as possible in the research process. This is often when big decisions, like study design, are made—and these can hugely benefit from a lived experience perspective.
How can the value of that experience be appropriately acknowledged in research?
Prioritising the support of those individuals, in order to access the research and process and recognizing the value of lived experience means it should also be rewarded—ideally in remuneration.
You mentioned prioritizing support for those involved in research. What does that look like in practice? What role does EYMH play in providing that support?
It means giving more time, checking in, asking about their needs, and being aware that people may be dealing with additional stressors—so they may need to step back from the project at certain times. This is really where we are able to come in as EYMH. We are mostly volunteer-run and structured around peer-led support and spaces, so we can provide this existing structure.
Thank you for sharing your time and your lived experience!
BootStRaP Communication Team
Mental Health Dialogues is a webinar series jointly organized by 7 EU Horizon Europe projects on ‘Mental Health in Times of Change’, including Reconnected, IMPROVA, SMILE, ADVANCE, ASPbelong, Mentbest, BootStRaP.
24/02/2025
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