Stakeholder Experiences in Participatory Mental Health Model Development: A Focus Group Study

BACKGROUND: The involvement of stakeholders in computational model development is an emerging and promising practice that can enhance the understanding of the model context and improve its relevance for supporting decision-making processes. However, little is known about stakeholders' experiences in these engagement processes. This study explored the experiences of stakeholders on their involvement in the participatory development of a youth mental health model. METHODS: Focus groups were conducted with four stakeholder groups: (1) experts by experience who have experienced mental health problems, (2) young adults aged 16-25 interested in mental health, (3) professionals working in (preventive) mental health services for youth and (4) youth mental health researchers. Fourteen focus groups and one individual interview were conducted across three distinct rounds, in which a total of 43 stakeholders participated. Additionally, questionnaires were administered to evaluate the focus group sessions. The data were analysed using thematic content analysis. RESULTS: During the focus groups, participants valued comparing ideas across stakeholder groups and incorporating lived experiences into model development, but expressed doubts about the validity of their contributions and noted insufficient transparency in the modelling process. Participants also encountered complexities related to specific requirements of modelling, including the need to simplify the concept of mental health and to address interactions among mental health factors. CONCLUSION: Tailored information provision per stakeholder group and transparency of the modelling process can help address challenges in participatory modelling. This study offers practical guidance to improve stakeholder contributions in computational model development, ultimately improving model quality and supporting policy-making in complex domains such as mental health. PATIENT OR PUBLIC CONTRIBUTION: A participatory research approach was used to develop the computational model, thereby ensuring that it incorporated lived experiences and priorities of the stakeholders. Additionally, the involvement of two researchers with lived experience and expertise in patient participation in mental health research, together with an advisory board of advocates with lived experience, facilitated the continuous integration of these stakeholder group perspectives throughout all phases of the research process.