Researchers, policymakers, and funders continue to grapple with the question of how best to meaningfully engage community members as full participants in mental health services research. This is particularly so given estimates that 1 in 5 of this country’s children and youth experience mental illness and many of them will not receive any services to address their conditions. The issue of unmet need is of particular relevance when we consider the mental health needs of racial and ethnic groups who experience a range of challenges and barriers to access and use of needed mental health services. Reduced access to and use of quality mental health services when needed can result in a number of negative outcomes, including increased severity of symptoms, increased need for hospitalization and/or reduced quality of life, overall. In response to disparities in mental health, researchers and policymakers have continued to call for use of evidence-based interventions with communities that are more likely to experience disparities – racial and ethnic groups, members of LGBTQI2-S communities, and youth and young adults, in general – to eliminate them, which brings us back to the discussion on involvement of these populations in research studies.
Building the evidence base for interventions designed to successfully treat and/or prevent worsening of mental illness is grounded in comparative effectiveness studies, or research designed to identify clinical and public health interventions that “work best for improving health”. However, the clinical studies that are often used to build the evidence for mental health interventions continue to face challenges in enrolling racially and ethnically diverse study participants for a variety of reasons. For instance, a review examining enrollment of Latinos/Hispanics in clinical trials for conditions including ADHD, major depression, schizophrenia, and bipolar disorder found rates of participation that ranged from 1% to 19%. Such low rates of participation on the part of Latinos/Hispanics and other racial/ethnic groups in clinical studies continues to raise concerns on the part of some researchers that evidence-based interventions are not being adequately tested for the populations with which they will be used. More emphasis on patient-centered outcomes research (PCOR), which emphasizes patient's beliefs, opinions, and needs in conjunction with a physician's medical expertise and assessment, has increased efforts to improve research involvement on the part of communities but more work is needed to ensure that such efforts are adequately engaging populations that experience high rates of disparities.
The USF PathEd Collaborative Project is focused on engaging with local community stakeholders, including youth and young adults with lived experience in mental health, family members, providers and others to learn more about ways to increase collaboration between these groups and mental health services researchers at all stages of the research process (design, data collection, analysis, and dissemination of findings). In light of concerns about the disparities in mental health services, outcomes and the very low rate of participation in related research among Latin@s/Hispanics, the PathEd Project is collaborating with the Hispanic Services Council, a community-based organization working to increase access and opportunities for Latinos, while advocating for them within local service systems. In preparation for the needs assessment process that we hope to conduct with local partners in the near future, we’ve begun exploring some of the barriers to mental health services in the Tampa Bay area and participation in mental health services research that Latinos/Hispanics experience in our community.
Mental health stigma is often identified as an important relative to Latino/Hispanic beliefs about mental health. Researchers and practitioners alike note that for many community members, the term salud mental or mental health can be a non-starter and thus, recommend using terms like problemas emocionales (emotional problems) instead. In addition, we might remember that research and experience tell us that stigma is not universally experienced, nor does it always result in lack of service utilization. Stigma, like so many other things, is caused by a number of inter-related factors among Latinos/Hispanics, including age, education level, degree of acculturation, and past experience with mental (and other) health systems. While we expect to learn more about experiences of mental health stigma within local Latino/Hispanic communities, initial conversations with leadership at the Hispanic Services Council, have also identified key barriers to services for those individuals willing to seek them out, including lack of clinicians and other providers who can speak Spanish or are prepared to provide interpretation and translation services; lack of knowledge about services on the part of community members; and lack of transportation, hours of service delivery and other common accessibility barriers. A key question as we move forward with this project is to examine how such challenges to mental health service use might affect willingness to participate in research (if at all).
In addition, preliminary conversations about working more closely with Latinos/Hispanics in Tampa have highlighted the importance of adequately assessing local assets, as well as needs. For instance, the local population is wonderfully diverse, including immigrants from a number of countries in Latin America and the Caribbean, the U.S.-born descendants of Cuban and Spanish migrants arriving in the late 1800s, and the children and grandchildren of more recently-arrived immigrant groups. As with any population, this group also encompasses a variety of socio-demographic factors. There are numerous stories of individuals with extensive education in their home countries, who are unable to work in their field of study due to lack of credentialing of their degrees. However, these individuals may often work in related fields (e.g. former doctors or medical students, who work as medical assistants) or serve as a ready source of advice and information for their neighbors and extended family members. Identifying these assets and learning more about how to successfully connect with them as possible research collaborators and to teach us, researchers, about how to successfully engage with their communities could lead toward the co-creation of various research project ideas and exciting new ways to approach community engaged research.
While we are just embarking on the process of bringing local community members to address the need for more collaborative research projects designed to improve mental health service systems in Tampa Bay, there are a number of opportunities for us to identify the challenges individuals and communities face in receiving the services the services and support that they need and want or trust. Perhaps, even more exciting is the opportunity to work alongside community members to design and carry out projects that can help us to truly improve our service systems for all residents.
 Houtrow, A. J., & Okumura, M. J. (2011). Pediatric mental health problems and associated burden on families. Vulnerable Children and Youth Studies, 6(3), 222–233. doi:10.1080/17450128.2011.580144
 Harvard TH Chan School of Public Health. (2019). What is CER? Retrieved from https://www.hsph.harvard.edu/comparative-effectiveness-research-initiative/definition/.
 Cabassa, L.J. (2019). Reframing Implementation Science to Address Inequities in Healthcare. Summer Institute on Implementation Science, University of North Carolina, Chapel Hill, NC.)
The PathED Collaborative's second stakeholder advisory workgroup (SAW) meeting was held March 14th (2019). The primary aim of the meeting was to brainstorm what impactful "research capacity building" activities would actually look like for diverse stakeholder groups.
A number of important questions were raised by SAW members, including what the longer-term aims of research capacity building actually were--to directly involve stakeholders in existing projects? Future projects? How would such involvement actually be compatible with the day-to-day work and roles of individuals (such as nurses or therapists) not directly engaged in research? We then segued to a discussion of what sorts of activities, across a mix of possible needs and barriers, might make a difference.
Some ideas generated by SAW members included: