Diversity—And Science—Could Benefit From 90-Year-Old Research Approach
By Deborah Borfitz
June 1, 2023 | After embracing a research approach long used in the public health field, neuroscience investigators at the University of California, Riverside, (UCR) made some surprising discoveries about the Latino community—including the cultural realities driving conduct problems in preadolescent girls. The focus of researchers consequently pivoted from the reported disruptive behaviors of the girls to the elevated anxiety they were experiencing, according to Kalina Michalska, assistant professor of psychology.
Community-based participatory research (CBPR), which dates to the early 1930s, means no longer simply taking data from a study population but treating them as equals, she says. “It has been very eye-opening and humbling, and I just wish I had done it sooner.”
Michalska directs UCR’s Kids Interaction and Neurodevelopment (KIND) Laboratory, and its primary ongoing longitudinal study is the KIND Lab Girls Study (KLG Study). Although child participants aren’t specifically recruited for anxiety symptoms, just over 28% of them meet the diagnostic criteria for anxiety disorder, as reported recently in Frontiers in Integrative Neuroscience (DOI: 10.3389/fnint.2022.1007249).
Learning to treat community members as experts admittedly took some time, says Michalska, who was introduced to CBPR in 2019 by Rengin First, a colleague in the sociology department. But establishing a more equitable partnership reflective of the cultural values of study populations changes the power dynamics in the research team such that critical pieces of information get freely shared.
Integral to the CPBR approach is the formation of a community advisory board (CAB), a dozen or so community collaborators who act as informational liaisons between scientists and the community. It’s a practical collaboration tool furthering efforts to promote diversity, equity, and inclusion, says Michalska.
In this atmosphere, the research team discovered that the gender-neutral term “Latinx”—coined in academia as a show of respect for the various cultural and ethnic identities of Latin Americans residing in the U.S.—didn’t resonate with participants in the study at all, she continues. “It would not have occurred to me sooner to just simply ask the population... what they thought, not just of the term but of me using it, not being from the [Latino] community.”
Another revelation during conversations with CAB members is that they typically do not want to discuss immigration status, which investigators suspect is a major social determinant of mental health, says Michalska. Conditions escalating anxiety symptoms are often lived experiences having to do with feeling unsafe day after day, which might well be the response of the girls to an increasingly restrictive U.S. immigration policy being reported on the news, they reasoned. “Even if they’re here legally, children might conflate being Mexican with being illegal.”
Insights like these shaped the team’s research agenda as well as creation of the questionnaire used to assess anxiety levels in the young KLG Study subjects, she says. The study is now leveraging neuroimaging to examine how associations between immigration threat and mental health influence brain development during the transition to adolescence, while protecting anonymity.
Michalska became deeply familiar with the CBPR approach after being awarded a 2021 grant by the UCR School of Medicine’s Center for Health Disparities Research. Up to then, the KLG Study had been focused on the neural bases of disruptive behavior disorder and conduct problems in Latina youth, based on prior work pointing to sex differences in the associated brain responses, she says.
While Michalska had always spoken with families, notably during the consent process, the switch to CBPR added formality and mutuality to the ways they communicated. “I learned that yes, indeed, some girls do struggle with conduct problems... but families shared with us that their daughters had [uncommonly] high levels of anxiety—specifically, separation anxiety, social anxiety, and phobias” for which they weren’t getting treatment, says Michalska.
Previously, she hadn’t fully appreciated the connection between anxiety and conduct problems. She also grappled with her long-held belief that conduct problems arising in under-resourced communities were signs of psychopathology when they might well also be “signs of adaptations to the stress.”
Clinical trials also need a new modus operandi to become more appropriately diverse, Michalska says, which CBPR can help enable. The reality is that most people participating in neuroscience studies are still white and affluent—often college students—which isn’t representative of the overall U.S. population.
Minority kids who have had adverse interactions with scientists are “understandably anxious” when they come into lab space for a neuroimaging study, says Michalska. “The have no reason to trust me because they [and their families] have been hurt in the past.”
A problem develops if investigators are making inferences without that frame of reference, she points out. A brain scan that looks atypical could well be an adaptive response to emotional trauma [e.g., hypervigilance and anxiety] and not a mental health disorder. Unless the required time and effort is put into contextualizing findings, researchers can inadvertently heap more harm on their study population.
By understanding the condition of their existence, mental health professionals might also change the way they talk about mental health, to acknowledge the structural problems that are driving individual-level differences, Michalska adds.
Spirit of Reciprocity
Through the CAB, researchers learned that families were interested in receiving mental health services, says Michalska, noting that she then had to consider what she was able to deliver. There was also sometimes still a stigma associated with seeking out a therapist.
What the research team ultimately settled on was an art therapy workshop series, hosted on campus, on Saturday mornings. Most recently, per a suggestion from the mothers, a workshop was led by a woman who brought gongs into theater space for a meditative “sound bath” experience, Michalska says. Other facilitators have included a professional art therapist to help participants visually explore their emotions, a dance artist who led children through movements for coping with challenging emotions, and a children’s author (also a CAB member) who taught the girls how to create their own storybooks.
All of this is designed, in part, to increase trust in science and researchers. It is also a way to give back to the community beyond modest payments given to study participants, she says. “I use my funding... to compensate the CAB members, bring in snacks, put on the art therapy workshops, pay for parking, the room reservation fee, the lab manger... [to] just keep showing up in the community and put their needs on my radar and not just constantly taking.”
This gets to why CBPR has not been widely adopted outside of public health research: it can be expensive and time consuming. “These approaches slow you down because you have to step back and rethink your research program,” says Michalska. “Trust building takes time.”
In the same spirit of reciprocity, published studies include CAB members as authors, she says. The KIND Lab also produces a biannual newsletter reporting research findings to the kids and their parents, which includes a running list of mental health resources in the community that gets updated frequently.
Knowing study results are going to be communicated back to families has made Michalska think about what she has to say, and it’s not the language she was accustomed to using as a trained developmental psychologist. “I don’t want to communicate to them that they’re at elevated risk [or] that there’s anything problematic,” says Michalska. “I want to talk about the strengths of immigrant families, the resources families have, and the parenting practices that can buffer [children from] some of these structural influences. [Producing the newsletter] helps me have greater empathy.”
In addition to the CAB, “positionality” maps are used as a tool within the CBPR framework to counter biases by giving visibility to the power dynamics between researchers and community members, she continues. Michalska, for example, is an immigrant from Europe so she can in some respects empathize with the immigration experience of study participants but in many ways cannot because of privileges arising from her European ancestry.
The maps graphically display everyone’s position, so investigators think about the relevant identities that shape how they interpret study findings. There are boxes for identity categories (e.g., age and social class) with a number representing how many individuals share each one, how these identities impact their lives (e.g., millennial and Ph.D.), and some of the particularities of these identities (e.g., desire to defy “lazy” stereotype and access to resources/knowledge).
Racial privilege isn’t the only bias exposed by CBPR, says Michalska. Many electrophysiological devices are not designed to handle phenotype variability—including people with darker skin or curly hair, contributing to their systemic exclusion.
The other big bias arises when marginalized individuals come into scientific spaces and, because of historic oppression, feel apprehensive about the experience that in turn affects their neurological responses, she adds. “It’s on scientists to acknowledge it, but also to make these spaces safer and to reestablish trust.”
A student in her lab is now working on a paper looking at brain responses at rest, Michalska reports, the aim being to learn if there is or isn’t any overlap between people with an anxiety disorder and those experiencing momentary anxiety because they’re apprehensive about the environment or the sound of the imaging machine itself.
Moving forward, research being done by the KIND Lab will more often be including measures addressing systems of inequality, she says. In addition to identifying study participants as Mexican families or Latina girls, for example, investigators will also be looking at characteristics of the neighborhoods where they live and their experiences of discrimination.
Such analyses aren’t required by the Food and Drug Administration, which only encourages clinical trial results to be compared across demographic groups. But it is lived experiences, not race or ethnicity, which is sending out differing neurobiological signals confounding researchers in the field, Michalska says.