"We May be at the Table but Not Sure How Much of a Difference It's Making": Unpacking Service User Experiences of Involvement in Participatory Mental Health Services Research Projects

Background and purpose: Over the past decade there has been a growing push for participatory methods in social care and mental health services research, including incentives or mandates from prominent funding entities such as PCORI, RWJF and the Wellcome Trust. Such mandates can come to operate as double-edged swords, however: on the one hand incentivizing participatory methods, on the other potentially leading to tokenistic rather than meaningful involvement (in order to “check a box”). The research described here builds on our prior efforts to understand the landscape of participatory mental health services research in the US, with a particular focus on the perspective of individuals who have been included in research efforts as “stakeholders,” “advisors,” or “co-researchers.” Specifically we sought to understand how involvement in PR projects may impact those involved and the extent and ways in which advisors and co-researchers feel empowered or disempowered in their roles and ability to influence project decisions.

Methods: Following a mixed methods sequential explanatory design we conducted a national survey of mental health services research stakeholders focused on their experiences, concerns and priority next steps for improving meaningful integration (N = 98), followed by in-depth interviews with 25 of the original survey participants, thematic coding and mixed methods integration. This presentation focuses on qualitative findings.

Results: Survey data revealed widespread concerns with tokenism, minimal opportunities for involvement in key aspects of research projects such as grantwriting on the front end and data analysis on the back end, and insufficient diversity and intersectionality among stakeholders included in participatory projects. Interview findings deepen and extend these findings, calling attention to the sometimes severely negative psychological impacts of involvement experiences that stakeholders have felt to be tokenistic, extractive and/or otherwise disempowering; stakeholder discomfort raising concerns directly with project leaders, often compounded by socioeconomic disadvantage and dependency on consultation stipends or part-time employment associated with the projects in question; and lack of equitable recognition or benefit. Participants elaborated on concerns regarding lack of diversity among stakeholder co-researchers, including both diversity of perspectives and of intersecting ethnoracial and class identities.

Conclusions and implications: As funders and other mental health research leaders continue to push for stakeholder inclusion, it is imperative that the field take stock of the ways in which such involvement may in fact impact non-academic stakeholders, the potential for exploitations and disempowerment and need to proceed with caution, thoughtfulness and a commitment to deeper forms of equity.