In a recent study published in Psychiatric Services, stakeholders expressed deep concerns about the tokenism of service users in participatory mental health research and emphasized the need to genuinely center lived experiences.
The study, led by community psychologist, disability justice, and lived experience advocate Nev Jones, reveals an urgent need for change within the mental health research community in the United States.
Jones and her colleagues’ mixed-methods investigation identified the primary barriers to meaningful research collaboration as a lack of funding (76%), inadequate researcher training in participatory methods (74%), and insufficient diversity among stakeholders (69%). Participants prioritized researcher and stakeholder training (33%) and the authentic centering of lived experience to reduce tokenism (26%) as the most crucial next steps.
Jones and her colleagues write:
“Our findings strongly suggest that explicit national leadership in the United States, particularly from federal funders, could substantially strengthen the uptake and resourcing of participatory mental health services research,” Jones and her colleagues write.
“Our work also speaks to the need to better delineate diverse perspectives on potentially fuzzy constructs such as ‘lived experience,’ ‘stakeholder,’ and ‘community.’ In the broadest sense, the term “lived experience” might include every adult in the United States, especially if mild depression or having ever received a prescription for an antidepressant or anxiolytic is included. Greater clarity regarding who needs to be integrated into a given project and transparency as to whether this has happened seem fundamental to ensuring that stakeholders with the most pressing needs are involved in research as key contributors to study design, data collection, interpretation of results, and dissemination of findings.”
The study involved conducting eight consultative focus groups with diverse stakeholders (51 unique participants, mostly service users) and surveying 98 service users, family members, community providers, and researchers with participatory research experience.
The study highlights the need for increased attention and investment in developing, implementing, and sustaining participatory methods that prioritize collaboration with direct stakeholders, particularly service users, in U.S. mental health services research. The findings also emphasize the role of researchers who identify as service users and contribute a broader orientation from the service user-survivor movement.
Participants in the study expressed concerns regarding the quality of participatory efforts and the current level of institutional and funder support for such projects. Areas of particular concern include inadequate funding for service user involvement and leadership and insufficient researcher preparation and training in participatory methods. The study also revealed concerns that tokenistic forms of involvement are widespread, with a need to ensure that service users and other direct stakeholders have sufficient power to meaningfully influence or co-lead decisions involved in project design, analysis, and interpretation.
Compared to other countries with more developed involvement infrastructures, the U.S. has a lower prevalence of concerns focused explicitly on research inclusion. However, activists and critical scholars have repeatedly expressed worries regarding tokenism and the absence of leadership roles for direct stakeholders in policy, planning, and service implementation domains.
From the late 1970s to the present, activists have voiced strong concerns about the co-optation and depoliticization of originally anti-establishment terms, programs, and frameworks, such as “recovery,” trauma-informed care, and shared decision-making. In addition, numerous commentators in the U.S. have raised concerns regarding the mainstreaming of peer support, highlighting disparities between the rhetoric of peer specialist empowerment and the reality of low wages, lack of opportunities for leadership or advancement, and the siloing of peer specialists within the broader landscape of care.
The study also highlights the lack of dedicated research positions for service users in the U.S., unlike in Europe, Australia, and Israel. A few senior researchers in the U.S. have publicly disclosed psychiatric disabilities or family experience of mental illness, with some identifying their work explicitly as experience-informed. However, the relationship between research led by stakeholder researchers and research employing broader community involvement strategies remains undertheorized in the literature.
Institutional support for participatory research in the U.S. appears limited compared to more conventional research methods. For example, participatory approaches are less widely taught in graduate and postdoctoral fellowship programs. Faculty at research-intensive institutions often perceive community-engaged research as undervalued in tenure and promotions. This lack of support likely reflects the focus of research institutions on faculty “productivity,” primarily understood as a high volume of peer-reviewed publications and federal research awards.
The study aims to understand better the concerns and perceived barriers to collaboration between community-based stakeholders and academic researchers involved in participatory mental health services research in the U.S. and to map out stakeholder priorities for improving and expanding participatory mental health services research.
Demographic characteristics showed that minority ethnoracial groups were underrepresented in the survey. Most participants reported a lifetime psychiatric diagnosis, but only about 30% consistently disclosed their diagnosis in the context of research.
Participants were surveyed about 17 specific barriers. Six barriers were identified as most prevalent: lack of dedicated funding for stakeholder-led research, lack of training in participatory methods, lack of diversity among stakeholders involved, lack of support for compensating stakeholder involvement in grant writing or preparatory activities, researchers undermining or underestimating nonresearchers’ contributions, and lack of opportunities for stakeholder leadership.
Responses to open-ended questions revealed three additional concerns: inadequate stakeholder compensation, needed research training for stakeholders, and research projects and priorities rarely stemming from or identified by direct stakeholders. Respondents also expressed difficulties navigating jargon or understanding researchers’ language.
To advance participatory mental health services research in the U.S., participants suggested next steps such as ensuring training and continuing education for researchers and stakeholders, centering lived experience and reducing tokenism in research, increasing outreach to community stakeholders, increasing accountability to community stakeholders, increasing funding investments and stakeholder compensation, and increasing structural incentives or requirements for stakeholder inclusion in research.
Participatory mental health services research in the United States is underdeveloped, lacking formal guidance on required levels of service user involvement, minimum compensation standards, and capacity building for participatory methods. The study suggests that explicit national leadership, particularly from federal funders, could strengthen the uptake and resourcing of participatory mental health services research. In addition, training researchers via national professional associations could promote participatory curricula and encourage academic departments to incentivize stakeholder involvement.
The study highlights the need to better define concepts such as “lived experience,” “stakeholder,” and “community” to ensure stakeholders with the most pressing needs are involved in research. It also points to the need for more attention to the ethics of participatory mental health research and representation.
Recommendations for policy and practice include mandating or incentivizing stakeholder involvement in services research, sponsoring formal reports on current practices, issuing guidance for authentic stakeholder involvement, developing and promoting guidance on participatory methods training, investing in participatory methods courses, and addressing discrimination against people living with mental illness in programs and research centers.
The study authors acknowledge several methodological limitations that restrict the generalizability of their conclusions, including the use of a purposive sampling strategy rather than a random sampling approach. Additionally, the study’s survey sample lacked diversity, with only 25% of participants from ethnoracial minority groups.
It’s important to note that the study was conducted in the United States, which may not be generalizable to other countries with different healthcare systems or research environments. Nevertheless, the research indicates a clear need for increased resources, training opportunities, and capacity building to encourage participatory mental health services research in the United States.
Overall, the study highlights the unique perspective that individuals with personal experience of mental health services can bring to research. By providing greater support and resources for inclusive research methods, mental health services research can better serve and represent the needs of diverse communities.
Jones, N., Callejas, L., Brown, M., Colder Carras, M., Croft, B., Pagdon, S., … & Zisman-Ilani, Y. (2023). Barriers to Meaningful Participatory Mental Health Services Research and Priority Next Steps: Findings From a National Survey. Psychiatric Services, appi-ps.(Link)