JMIR Publications

ABSTRACT

Background:

Incorporating members of the public as partners in research is increasingly prominent and is broadly defined as co-production. The inclusion of youth in mental health research co-production is particularly relevant for research on topics that directly affect them. Co-production can involve stakeholder contribution at every stage of the research cycle but how to evidence its impact on research is not well defined.

Objective:

To evaluate the impact of substantial online youth involvement within the MindKind Study and categorise levels of their co-production.

Methods:

Virtual young people’s advisory groups (YPAGs) were set up as part of the MindKind study (MindKind Consortium, 2022) to fulfil co-production principles and involve youth in the research process. YPAGs were set up at 3 sites (India, South Africa and the UK). Each of these sites were led by a professional youth advisor (‘advisors’), with session content collaboratively created to ensure uniformity across sites. The YPAG and advisors provided feedback to the wider research team which directly informed key study decisions. To evaluate the impact of online youth co-production on all stakeholders, the following methods were used: analysis of project documents, views of stakeholders using the ‘Most Significant Change Technique’, and impact frameworks to assess the impact of youth co-production on specific stakeholder outcomes.

Results:

Impact was recorded at five levels. Firstly, at the paradigmatic level, a new and unexpected way of doing research allowed for a widely diverse group of YPAG representation on the panel. Secondly, at the infrastructural level, the YPAG were able to meaningfully contribute to the dissemination materials. Thirdly, at the organisational level, having an online shared platform meant that materials were easily accessible to the whole team, whilst ensuring communication streams remained constant. Fourthly, at group level, authentic relationships were maintained between the YPAG, advisors and the rest of the team facilitated by regular virtual contact. Finally, at the individual level, participants reported enhanced insights into mental wellbeing and appreciation of the opportunity to engage in research.

Conclusions:

This study has revealed several factors that shape the creation of a virtual co-production, with clear positive outcomes for the advisors and YPAG, despite the challenges of conducting a YPAG in low- and middle-income countries and pressing timelines. For a systematic reporting of the impact of youth co-production, we propose that monitoring, evaluation, and learning systems are designed and implemented early.