Associate Professor Alissa Davis, who focuses her research on stigma, was drawn to the subject because of the major challenge that stigma presents in the uptake of the many effective biomedical and behavioral interventions that researchers have developed for a variety of health issues. She now studies many different manifestations of stigma, including internalized stigma, anticipated stigma, perceived stigma, and intersectional stigma. Her focus is on stigma related to HIV, substance use disorders, mental health disorders, sexual orientation, and race and ethnicity, with a particular interest in how the many types of stigma intersect with each other and affect health outcomes. Through her work in multiple countries, she strives to expand our understanding of stigma and develop better tools for decreasing it at individual, interpersonal, community, and structural levels.
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Are there any patterns of harm that you see repeated across the different manifestations of stigma and around the world? What effect do they have?
Unfortunately, stigma is a problem globally. It’s a major reason why people don’t access healthcare services or seek social support. Stigma contributes to health inequities in all kinds of areas, including seeking HIV/STI care and reproductive health services, mental health services, and substance use services. The specific ways in which stigma manifests may differ from place to place. For example, in Kazakhstan, we found many were afraid of acquiring HIV in situations where transmission would be very unlikely, such as in nail salons or barbershops. In the US, there is less concern around this issue, but people with HIV still experience stigma in other ways, such as misperceptions about their sexual or substance use behaviors. It is important to include community members and local researchers who are familiar with the cultural context when developing strategies to address stigma, so we can be sure we’re directing them toward the specific manifestations of stigma in that culture.
What methods do you use to measure stigma? What are the pros and cons of those methods?
Obtaining objective measures of stigma is difficult. The most common method is surveys, which allow individuals to report the amount of stigma they have experienced or witnessed, or the levels of stigma they perceive exist in a specific setting, like in their communities, places of employment, or healthcare facilities. Another method is the use of standardized patients. Standardized patients go to clinics pretending to be a real patient and disclose their stigmatized status during the clinic encounter. They then report back how they were treated in the clinic. Were some procedures denied to them? Were the providers engaging in avoidance behaviors like moving farther away from the patient and avoiding eye contact if, for example, they thought the patient had HIV or used drugs? This method can obtain more objective measures of stigma in healthcare settings than asking healthcare providers to self-report. Even though the providers are aware that some of the patients they’ll see over several months will be standardized patients, they don’t know which patients they are.
There are additional challenges to measuring intersectional stigma. It can be hard to directly compare across stigma types when the scales for different types of stigma have different items in them. Sometimes researchers adapt one scale (such as one used to measure anticipated HIV stigma) to another type of stigma (such as anticipated sexual orientation stigma), so that the items can be compared directly. Another way researchers measure intersectional stigma is by asking participants to remember a recent stigma encounter they had, and then rank the order of reasons for which they thought they were stigmatized (e.g., race, sexual orientation, HIV status). There are limitations to all these methods (e.g., people don’t always know which aspect(s) of their identity or for which health conditions they experienced stigma; items appropriate for one type of stigma don’t always translate over well to other types of stigma), and a lot more work to be done to improve measurements of stigma, especially intersectional stigma.
What are the key findings of your most recent research in Kazakhstan and the United States?
In Kazakhstan, we conducted a citizen science study where we used crowdsourcing to have adolescents and young adults (AYA) develop digital content designed to reduce HIV stigma and promote HIV testing. AYA in the intervention arm were shown digital crowdsourced materials once a week over a month-long period, while AYA in the control arm received standard HIV messaging materials from Kazakh health organizations. We found that AYA in the intervention arm had significantly lower HIV testing stigma two months post-intervention than AYA in the control arm, though this effect was moderated by sex at birth. Female AYA in the intervention arm had significantly lower total HIV stigma immediately post-intervention and two-months post-intervention than females in the control arm. We found no differences in males between the arms of the study.
In the US, as part of our work with the HEALing Communities Study, we found that perceived community opioid use disorder (OUD) stigma was 4% higher among stakeholders from rural communities, stigma toward medication for opioid use disorder (MOUD) was 6% higher, and stigma toward naloxone was 10% higher than among stakeholders from urban communities. We also found that stakeholders from communities assigned to the intervention arm reported a larger decrease in perceived community stigma toward people treated for OUD and toward MOUD than stakeholders in wait-list control communities.
What does finding higher levels of stigma in rural communities mean for developing strategies to continue combating the opioid epidemic? How do you think scientists should use that to inform their next steps?
Individuals in rural communities face particular challenges with stigma. Your healthcare providers can often be your neighbors, which can make people more hesitant to access healthcare services if they have a stigmatizing condition. People in rural communities often know everyone else in the community, including a lot of personal information about them, and it can be harder to keep information private. In addition, rural communities can be more homogenous, so people may be less likely to interact with someone of a different race/ethnicity or sexual orientation than them, or know someone with a stigmatizing health condition. All of these elements combined can create an environment where stigma is higher. There are also strategies that work in urban areas, like specialized clinics, that are not always feasible in rural areas. This is another example where I think it’s particularly important for rural researchers to work closely with rural community members to develop stigma reduction strategies that work well in those specific communities.
What do you think are the most powerful tools at our disposal for addressing stigma?
One thing that has been shown to reduce stigma is increasing personal interaction and engagement with people from stigmatized groups. This helps humanize individuals, increase empathy, break down stereotypes, and reduce fear, as well as increasing awareness of the different ways people face stigma. Using skills-building approaches (e.g., trauma-informed communication, self-awareness and bias recognition) can also help providers and others develop the skills necessary for working with stigmatized individuals. For stigmatized individuals, using counseling or skills-building approaches can help increase their ability to cope with and overcome stigma. Focusing on addressing the most actionable drivers of stigma (such as lack of awareness, fear, and stigmatizing attitudes) can also help reduce stigma more quickly. Finally, centering individuals who are affected by stigma in our response efforts and building partnerships between providers and affected individuals is key.
Has anything in your research changed how you approach stigma in your everyday life?
I try to be more aware of how stigma manifests in ways that may not be immediately obvious and avoid perpetuating those types of stigma, as well as providing support to individuals who have experienced stigma when possible. For example, I have become more aware of how individuals with facial differences (e.g., scarring) are often portrayed as villains in film. This is another example of how people are represented in media that really matters and can affect how society views and treats individuals with facial differences. This can significantly affect these individuals’ physical and mental health, particularly for youth. I try to imagine life from others’ perspectives to the extent I can and combat stigma where I can. Unfortunately, I can’t fix everything, but hopefully I can make someone else’s day a bit brighter and show them someone cares.