Improving Mental Health Research through Community Participation

A recent report published in Behavioral Medicine explores barriers and obstacles to the efficacy of traditional clinical mental health research in psychiatry and psychology. The authors argue that participatory research methods, involving the perspectives and engagement of affected community members, improve research and real-world impact. Furthermore, they state that participatory research can help to break down the distinction between science and the community more broadly.

“These ‘participatory’ turns are premised on an explicit awareness of social injustice and power imbalances, while also challenging the presupposition that community members allegedly hold no expertise on serious matters of science,” write the authors, led by Miraj Desai of Yale University.

“Instead, community input and participation, including by those with direct experience of the topic being studied, are valued and embraced as an important feature of knowledge production, which, in turn, can help transform the wider system and benefit the community around it.”

There are several reasons to be skeptical of the current paradigm of clinical mental health research. The authors of the present article argue that clinical research does not accurately represent the community members that it studies and for which it offers interventions. This is connected to the critique that a great deal of psychological research is focused on “WEIRD” populations—Western, Educated, Industrialized, Rich, and Democratic—frequently made up of undergraduate students at U.S. universities.

Furthermore, many psychological researchers do not write to a lay audience. Their research often utilizes academic jargon and is geared toward other researchers, with findings typically locked behind paywalls and academic subscriptions.

Communities of color and other subsections of the population that have experienced marginalization and oppression may have little reason to expect that clinical researchers will have their best interests in mind or take their perspectives seriously.

“We then take a step back to describe specific sources of mistrust toward mental health research, in general, which may be encountered along the way to stakeholder or community engagement. These include systemic injustice within society and social institutions, documented cases of mistreatment, differential cultural perceptions of mental health, financial barriers, and the lack of demonstrable benefits of research and services for stakeholders’ own livelihoods and neighborhoods.”

Increasing recognition of these trends in the academic research community has inspired a movement toward “decolonization” of academic knowledge and research practices, as well as an emphasis on more egalitarian and responsive methods of research, such as Participatory Action Research.

The current report proposes participatory research methodologies as a solution to many of the issues around poor clinical research that is not responsive to the needs of communities. These methodologies include various contributions to research methodology and training that could counteract some of the inadequacies of standard research. The authors discuss three primary barriers to effective and responsive clinical research while arguing that participatory approaches offer potential correctives. They conclude with a case analysis of their own participatory project.

The first of these barriers they call incongruence, which refers to the difficulty of establishing common ground between psychiatric narratives of mental health and more every day, lay-person narratives. Some communities reject the biomedical paradigm for mental health, and as the authors note, even when people adopt the use of psychiatric terminology like “depression” or “anxiety,” the causes and explanations of these struggles may not be located in the same place.

Participatory research methods avoid this barrier by including the voices of those affected. There is an emphasis on community and trust-building, democratic consensus around research design decisions, and being inclusive of community member concerns and perspectives on the problems as well as any solutions. This includes accessible language around the issues at hand, devoid of professional jargon. This contrasts with traditional research, which communicates in an academic dialect, rarely consults its study participants, and certainly does not include them as co-collaborators in the research process.

The second barrier is risk or concerns about safety related to research involvement. The authors cite examples such as arrest (in the case of addiction research), not receiving follow-up treatment once the study has concluded, and general distrust based on experiences of mistreatment. They state that logistical concerns can be an impediment as well—transportation, child-care, and others.

Participatory research offers a corrective through open communication around these types of risks, which can have the additional benefit of showing co-collaborators that their time, safety, and voice are valued. Measures such as obtaining Certificates of Confidentiality when relevant, as well as discussing what happens to the co-collaborators after the study ends, are also suggested.

A third and final barrier is relevance. Researchers have traditionally not focused as much on immediate and direct benefit to their study participants, preferring abstract, generalizable knowledge that furthers scientific understanding.

Participatory research works against these conventions by attempting to identify and contribute to positive benefits for the community members in question. This is achieved by consulting community members and learning from them because they are assumed to carry relevant insider knowledge and expertise. This has the further benefit of allowing for the chance to begin to address historical injustices and systematic disadvantages, as the voices of the co-collaborators are accounted for and their needs considered.

The authors follow this analysis with a case study of their own participatory project at Yale University. They state that many involved did not share the researchers’ psychiatric commitments, but that the participatory practices helped them find common ground and expand each side’s understanding of the issue at hand. Insight around research priorities, barriers, and facilitators of meaningful research involvement, a greater understanding of the contextual determinants of health, and other issues were expanded through the collaborative process.

“But beyond these issues of research and practice, participatory research holds an even greater promise of making research and the products of research more applicable to improving the lives of people in the community, and of building community,” they conclude.

“This is what we heard from stakeholders and what they wanted researchers and clinicians to know; that there is a way to develop partnerships and collaborations, in which stakeholders feel a part of the process that has always concerned and involved them. Research, in turn, becomes more impactful and ecologically valid. Immediately after our training, various researchers had already reported the benefits of being able to interact with stakeholders and began making concrete plans to involve them in future research projects.”

 

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Desai, M. U., Bellamy, C., Guy, K., Costa, M., O’Connell, M. J., & Davidson, L. (2019). “If You Want to Know About the Book, Ask the Author”: Enhancing community engagement through participatory research in clinical mental health settings. Behavioral Medicine, 45(2), 177-187. (Link)