LEXINGTON — From the New York Times to visits from the director of the Centers of Disease Control and Prevention, health disparities in Appalachia are receiving a lot of attention, and for good reason. The list is sadly familiar: life expectancy in the region is about five years lower than national averages; rates of cancer, cardiovascular disease, stroke, obesity, diabetes, and unintentional injury are among the very worst in the country; and myriad socioeconomic and geographic barriers limit access to health insurance and care. Former University of Kentucky President Lee Todd Jr. famously referred to these measures as the “Kentucky uglies.”
Kentucky has yet another “ugly,” equally serious but less cited than the rest: Kentucky is ranked third in the U.S. for incidence of depression, with 23.5 percent of adults experiencing depression at some point during their lives, compared to 18 percent nationally.
And, as with the other “uglies,” the problem is worse in Southeastern Ky., where more than 29 percent of adults have been diagnosed with a depressive disorder. Rates of depression are even higher among low-income women in Kentucky, 34 percent of whom have a lifetime incidence of depression compared with 22 percent of those who are not poor.
According to Claire Snell-Rood, a postdoctoral fellow in the UK College of Medicine’s Department of Behavioral Science, understanding how women in the region conceptualize the experience of depression is critical to addressing the problem. Following doctoral work at the University of Virginia — including a Fulbright grant to study the social strategies of women in an Indian slum to promote health — she is currently leading a grant from UK Center for Clinical and Translational Science to study social and cultural factors that limit women in Appalachia from seeking treatment for depression. Carl Leukefeld, chair of the Department of Behavioral Science, is the principal investigator.
“This study comes from the fact that we know that Eastern Kentucky has extremely high rates of depression. By county, sometimes it’s twice or three times the national rate. And we know it’s a mental health professional shortage area. But we don’t really know much about the experience of the women in the region who suffer from depression,” she said.
The study is also motivated by the decades of research showing that mental health is fundamental to all aspects of health and health behavior, a consideration that can’t be overlooked in a region with many of the worst health challenges in the country.
“Mental health is really crucial in shaping people’s elemental health behavior,” she explains. “Who you believe you are and how you feel about yourself is sometimes more important than what you think is the best thing for your physical health. And those things are really shaped by our culture.”
She is particularly interested in why women in Appalachia do and don’t seek treatment for depression. Compared to people outside the region, residents of Appalachia are more likely not to receive treatment for depression because they don’t feel the need or fear stigma. Snell-Rood is exploring this through in-depth interviews with 28 women who all have symptoms of depression but haven’t all sought treatment.
Fran Feltner, director of the UK Center for Excellence in Rural Health (CERH), and CERH staff provided guidance to Snell-Rood from the very beginning of the study, offering suggestions on research methods, outreach, and some of the social and cultural factors that were likely involved in the problem. An enthusiastic research assistant from CERH, Keisha Hudson, coordinated with community health workers to identify women and arrange interviews. When the research team was challenged by repeated no-shows to interviews, CERH staff offered suggestions for alternatives and solutions.
“Their infrastructure and drive were essential in making this research happen,” she said.
According to Feltner, major challenges to mental health care in Appalachia continue to be centered around access to care, including transportation and shortages of mental health professionals, despite positive impacts from the Affordable Care Act and Kynect. Barriers such as stigma, however, aren’t necessarily resolved by insurance or transportation.
“In many cases, culturally, people do not look at depression the same way they might view heart disease or diabetes. There are stigmas associated with depression and people are often reluctant to seek help for fear that they will be viewed as weak and unable to take care of their own problems,” said Feltner.
Also key to the project is Dr. Nancy Schoenberg, a fellow medical anthropologist with expertise in community-based participatory interventions, chronic disease prevention and management, self-care, and qualitative and complementary methodology.
“Dr. Schoenberg has extensive experience in taking understandings about culture and health problems and translating them into relevant interventions,” Snell-Rood said.
Snell-Rood and her team are beginning to analyze their findings in order to understanding how women feel about their depressive symptoms, the origins of the illness, the impact on daily life and general health, help-seeking and self-management strategies for depression, and the degree to which they face stigma from their family and community.
This goal parallels National Institute of Mental Health’s stated priority on the investigation of “mechanisms by which culturally associated beliefs about mental illness and is treatability impact the early development and interpretation of symptoms as well as timely referral for evaluation and intervention.” The hope is that findings from this pilot study will lead to further funding from the NIMH to inform family- and community-based solutions for regional and rural mental health disparities.
The project is also raising complicated questions about the intersection of mental health, characteristics of the Appalachian region, and logistics and ethics of research: What does it mean to be depressed in a depressed area? How might mental health contribute to high substance abuse rates in the region? How do you conduct participatory research about something people don’t want to talk about, and how do you develop interventions that are community-based when you’re dealing with sensitive issues and privacy concerns?
Snell-Rood knows that these questions won’t be answered in the course of a single study, but she hopes to contribute to the solutions. While analysis of the interviews are ongoing, a few themes are already emerging. About half of the women interviewed had never sought treatment; those who had sought treatment reported mixed impressions, frequent use of pharmacology, and limited time with their providers.
Perhaps most strikingly, everyone talked about fear of judgment. Stigma related to mental illness is potentially more severe in a region characterized by values of family reliance and cohesion that might disincentivize people to share emotional difficulties, especially if they relate to private histories.
Two studies have furthermore shown that communities in the region don’t rank mental health as a priority health concern. Snell-Rood suspects that even this finding is related to stigma.
“It’s often just not as easy to talk about mental health as it as about heart health,” she says.
Knowing this, she is especially grateful to the women who agreed to be interviewed, even though it meant opening up about things that are often considered private.
“So many women said ‘I’ll share this with you because I want to help. I want to make sure there’s are more resources here in the future than there are now.’ They were giving us something that was extremely valuable.”