HIV-Related Intersectional Stigma Research Advances and Opportunities Workshop (Virtual)
Paul Geist: Welcome to the start of the NIH Office of AIDS Research, a National Institute of Mental Health, HIV, and Intersectional Stigma workshop. I am Paul Geist and I work in the NIH Office of AIDS Research. I'd like to thank everyone for being here today. I would like to acknowledge the Office of AIDS research and the National Institute of Mental Health Leadership, who have supported this workshop from its inception.
I would also like to give huge credit and appreciation to my planning group colleagues, Dr. Greg Greenwood of the NIMH Division of AIDS Research and Ms. Amber Wilson of the NIH Office of AIDS research, as well as for behind the scenes event producer of this out group. In this opening session, you will hear from distinguished members of NIH and the Department of Health and Human Services Leadership about the importance of HIV related intersectional stigma. As well as key points of context, and about the three-phase approach, we will be taking over the course of this workshop.
In the attempt to best address HIV-related intersectional stigma and discrimination, and to do justice to the importance of these topics, we invited and have assembled you here today as key experts and noted change agents. We appreciate and were impressed with the high level of interest and enthusiasm with which you accepted your invitations and committed to this effort. Thank you for that.
Together in the structure of this workshop, we will cover a lot of ground, and I have no doubt do groundbreaking work in a relatively short amount of time we have set for this. We appreciate you being here. Now, I will turn this over to Greg for some additional remarks and details about today and the workshop overall. Greg?
Greg: Great. Thank you very much, Dr. Paul Geist, and thank you Ms. Amber Wilson, it's truly been a wonderful partnership to work with you on this meeting and I'm grateful. I'm also grateful to the leadership of the NIH Office of AIDS Research and the National Institute of Mental Health, most notably our co-chair Drs. Goodenow and Rausch I'm excited to get today's opening session started so I will keep my remarks very brief.
A few comments about logistics for everyone. First, if you're experiencing any technical difficulties, please reach out to us via the Q&A chat box, which is located on the lower right portion of your screen. Our event producer will quickly assist, please also see any instructions and the webinar notes in the upper right. Second, if you haven't already, and you click on the microphone drop-down button and you select conduct my audio, please be sure that you are muted, or our event producer may mute you if you forget.
Third, during Question and Answer sections of the day, you can submit your questions via the Q&A box, or you can click on the raise hand icon which is located at the top of your screen. Questions submitted via the Q&A will go to the moderators and presenters. Please feel free to submit questions throughout the event and we will do our best to address all the questions. If some need further discussion, but some may need further discussion moving along in our virtual workgroups.
Finally, an unedited recording of this webinar will be shortly available by the end of the week or early next week if you miss some of the sessions. We will publicly post high-quality recordings that are 508 compliant sometime this summer. I think that covers logistics for now. Let me just end by saying that I really appreciate and thank you for your willingness to engage with us today and over the summer as we take an unflinching look at the subject matter.
It's important for us to think critically and carefully as we consider and perhaps reconsider our understandings and our directions. I think we all share a bias toward action and so at that, let us get started and I'll turn it back to Paul. Thank you.
Paul: Thank you, Greg. It is now my honor to introduce our first welcoming speaker and co-chair of the workshop Dr. Maureen M. Goodenow. She was appointed Associate Director for AIDS Research at the NIH and director of the NIH Office of AIDS Research in 2016. In this role, Dr. Goodenow leads the OAR in coordinating the NIH/HIV AIDS research agenda to end the HIV pandemic and improve the health of people with HIV. In the past four years, Dr. Goodenow has redesigned and retool the OAR as well as the NIH/HIV AIDS Research Program overall. For emphasis is consistently on innovation, diversity, and impact across the program, as well as in NIH's work with as many public, private community, and academic partners. Dr. Goodenow.
Dr. Maureen M. Goodenow: Thank you, Paul. Good day to all and welcome to the workshop. Thank you for joining us today in particular co-chair Dr. Dianne Rausch and our other opening speakers, Dr. Joshua Gordon, and Mr. Harold Phillips.
To say this workshop is timely is an understatement. Once again, longstanding racial, social, and economic inequities are at the forefront of our lives, manifested not only through HIV-related, but also COVID-related health disparities, as well as the recent tragic deaths of Breonna Taylor, George Floyd, Elijah McClain, Ahmaud Arbery, and too many other victims of hatred, discrimination, and brutality.
As a leader in health research, NIH has the mission and responsibility to continually secure the evidence needed to achieve new ways to improve people’s health and keep them free from harm and disease. This includes addressing the health consequences of systemic racism, stigma, and health disparities that prevent individuals and communities from experiencing the full and complete life they hope for and deserve.
Community members and researchers have long discussed intersectional stigma and discrimination. But systemic and institutional policies ingrained in civil society are also public health issues that affect the wellbeing of individuals and communities.
To the heart of the matter, HIV-related stigma is a critical barrier to the prevention, care, and treatment of HIV. Stigma impedes access to and uptake of effective tools to prevent HIV transmission, as well as to fully achieve positive health outcomes and quality of life for people living with HIV.
We also recognize that the nature and intensity of HIV-related stigma may be exacerbated by co-morbidities, such as mental health issues, substance use disorders, and/or pre-existing social inequities [based on gender, sexual orientation, race, and age]; as well as coinfections whether long-standing infections such as TB or the current novel coronavirus ravaging the global community.
The NIH/HIV AIDS Research Programs overarching priorities are outlined in the NIH five-year strategic plan for HIV and HIV-related research. The NIH recognizes the importance of intersectional stigma research in the context of HIV, which has captured due to cross-cutting priority areas of behavior and social sciences and it's relevant to all the other overarching priorities. Researchers are making progress to eliminate the effects of intersectional stigma at the end of this community and structural levels. Finding through studies that will be presented today will lay the foundation for the implementation of HIV intervention services and programs that move beyond
considering stigma as a human dimensional variant to addressing various forms of marginalization at the intersection of factors such as race, gender, sexual orientation, and socio-economic status.
That brings us to the workshop in our work at hand. The workshop is organized in three phases. Today, phase one is the opening session, where we will participate in a series of pioneering presentations and discussions that will lay the groundwork for the next few phases. Over the next two months, phase two will be implemented, and that involves four online interactive workgroups that will meet approximately three times to collaboratively address key questions, develop a summary report and presentation and prepare an outline for a post-workshop meeting report, and journal article. The final phase, phase three, will take place on September 18th when we have our final readout report out session and that will be open to the public.
This will be a moderated discussion with workgroup presentations and refinement of key points and next step. Today, the work of phase one is focused on the development of a consensus, conceptualization of intersectional stigma, and discrimination related to HIV, identification of research opportunity and ultimately, implementation strategies and interventions to address the health consequences of stigma and discrimination. These efforts will be then continued through phases two and three of the workshop.
Many of us here today attended the virtual AIDS 2020 conference last week. Relevant themes of HIV and comorbidities, stigma and discrimination were discussed including in the satellite session organized by OAR entitled the impact of NIH/HIV AIDS research, and discovery at the intersection of prevention, treatment, and disparities across the lifespan. As we move into our workshop discussion today, and over the next few months, we will build on our collective knowledge, experiences, perspectives, creativity, and wisdom. I look forward to the work that will be done at this workshop and its contribution to the progress toward ending HIV.
It is now my pleasure to introduce our next speaker into this opening session, Dr. Joshua Gordon. Dr. Gordon became the director of the National Institute of Mental Health in 2016. This NIH Institute is the lead federal agency for research on mental disorders. Dr. Gordon is a psychiatrist and neuroscientist with extensive experience in mental health research and practice. He oversees a broad research portfolio of basic and clinical research that seeks to transform the understanding and treatment of mental illnesses paving the way for prevention, recovery, and cure. Over to you Dr. Gordon.
Dr. Joshua Gordon:. Thank you very, very much. Dr. Goodenow for the introduction both to the workshop and to myself. I want to thank you also for your support at the NIMH AIDS Research Programs over the years you've been here. I want to thank Dr. Rausch, Mr. Phillips, community partners, researchers, and government officials for joining us today and for making this intersectional stigma workshop a priority for you all. I'm sorry that we can't welcome you in person at the NIMH, that would have been wonderful, but I think this workshop is a nice substitute for that and hopefully, it will be more than nice.
Hopefully, it will set the stage for our efforts to come. Let me just talk to you briefly, if I can have the next slide about our mission, our vision. The NIMH envisions a world in which mental illnesses are prevented and cured. Our mission is to transform the understanding of treatment of mental illnesses through basic and clinical research paving the way for prevention, recovery, and cure. This vision, and this mission leave unstated what is really crucial, which is that we are committed to improving the mental health of all individuals. As such, this mission and vision is incomplete if we don't ensure that we work hard to reduce disparities and to ensure that all members of society have a voice and access to care and have access to effective care that works for them.
At the NIMH, in addition, of course, to our division of AIDS research, which is deeply committed to these issues, we have specifically an office for disparities research and workforce diversity. This coordinates the two significant priorities NIMH closely related to, to ensuring that we improve the mental health of all individuals. One is to reduce mental health disparities and promote equity, both within and outside of the United States. Two is to further efforts to diversify the mental health research workforce.
Unfortunately, mental health disparities remain a persistent public health issue in the United States that's been, if anything, accentuated and highlighted by the COVID pandemic, which has affected individuals of color and from disadvantaged underrepresented communities from rural areas, more so than other populations. The mental health disparities persist for racial and ethnic minorities, sexual and gender minorities, individuals from lower socioeconomic strata, those residing in rural or frontier geographic areas. Many of these, of course, are high risk areas for HIV as well.
We have acknowledged and continue to acknowledge that sound mental health research must include a multiplicity of perspectives and approaches from a diverse array of contributors in order to ensure that we address these disparities through our research program and therefore, our own workforce, our investigators, the individuals, as well as the individuals participate in NIMH funded research should represent these groups.
To this end, if I could have the next slide we have in the new strategic plan, that was just released in May, set out many of the expectations for research that we conduct across the board to ensure that it is aimed squarely at this mission of improving the mental health of all individuals in the US. This new strategic plan provides a framework for advancing research priorities, not only disparities, but really across our mission areas.
We aim to build on the advances that were accomplished in the previous iteration of the plan, and in this document, we identify areas new document where NIMH funded science can have the greatest impact. I want to point out two features of the plan, first more relevant to this workshop that we have a long history of supporting research on mental illness stigma, and HIV-related stigma and intersectional stigma. This is one of the genesis, one of the reasons why we want to have this particular workshop. Then the other is that this is a living document that will be influenced by the outcomes of our interactions with the external community, including this workshop.
We hope that we will look at this document and look for where we are falling short on declaring the importance of our mission and help us continually update and revise the strategic plan. We also hope you look at the document to look for scientific progress that we've made along the way, which will be elucidated in the plan as well. I just want to conclude by saying that as noted by Dr. Goodenow, the importance of advancing research and opportunities to measure and intervene, to reduce intersectional stigma and discrimination.
This is an urgent priority that in light of the mental health burden and massive, really racial and disparities that already existed but that had been revealed by COVID-19, plus the long history of institutionalized racism, which has also come to a fore in the last few weeks that this underscores the importance of our efforts and underscores the importance of the workshop that you'll be participating in.
With that, I'll just hand the microphone over to Dr. Dianne Rausch, director of AIDS Research at NIMH. I'll spare you the long introduction, but I will say that Dianne really has been at the forefront of ensuring that our AIDS research that we conduct here at NIMH is thoughtful in this particular area of ensuring that we help all Americans and really individuals all around the world. I'll leave it to her for further remarks. Thanks.
Dr. Dianne Rausch: Thanks, Dr. Gordon, and thanks Dr. Goodenow and Mr. Phillips for participating in this opening panel. Thank you to all the participants, our community partners, researchers and government officials, and thanks for taking the time to be with us today. Just to give a little overview, the division of AIDS Research at NIMH has a very broad mission which is to support research to reduce the incident of HIV/AIDS worldwide and to decrease the burden of living with HIV. Our supported research encompasses a broad range of studies from basic and clinical neuroscience to basic and applied behavioral science within the context of HIV prevention and treatment and cure.
The important part of this mission is looking at stigma. NIMH has been recognizing the importance of stigma from very early on in the epidemic. It has been included in our priority setting since the beginning of our work here. This includes understanding and addressing the impact of stigma and other social determinants of health as they relate to HIV prevention and treatment for socially disadvantaged populations. Just a little history behind how we got here today. In 2015, efforts were underway to update the US National HIV Strategy which was developed in 2010 and to build a plan for 2015 to '20.
Building on the many advances in HIV/AIDS research during those discussions the importance of stigma again was identified as a continuous problem that needed to be addressed. We thought we should develop a meeting to really look at what has been learned and where the gaps in the research are and how to build on that to move forward. When we started talking about a meeting, we were partnering with the team from both the Office of AIDS Research at NIH and the White House Office of National AIDS Policy as well as the NIMH staff.
We began to develop an agenda for a conference. As we were developing this agenda, the expanded interest continue to grow. It was thought that this needed higher visibility than we could do. It became the White House Meeting on Stigma which focused on what we know about potential interventions, measures, and actions to counter it. The meeting goals of the 2016 meeting were to review best practices for measuring and monitoring stigma, evaluate current interventions to reduce stigma and improve health outcomes and to identify gaps in our understanding.
This conference brought together researchers and stakeholders from around the US as well as around the world, including representatives from federal agencies, leading academic institutions, the legal community, advocates, and ministers for a rich conversation about this complex and multifaceted issue. Participants discussed best practices for measuring and monitoring stigma as well as methods of intervention focused on reducing or overcoming stigma in order to improve HIV outcome and identify problematic gaps in our understanding.
One of the most emergent priority themes was the intersection of HIV stigma with other forms of stigma and discrimination, such as those related to sexual orientation, gender identity, mental illness, substance use, social economic status and race and ethnicity. We felt that from that meeting that we needed to take a deeper dive into the research. In 2017, NIMH, Fogarty, and other NIH partners hosted a workshop the Science of Stigma Reduction New Directions for Research to Improve Health.
During those meetings we brought multidisciplinary experts together to look at what's been done and identify an agenda for stigma research and global health. As a result of that meeting, it was decided that we would do an RFA on intersectional stigma. The goal of this RFA was to improve HIV prevention continuum. This was done as a collaboration with NIMH, NIMHD, the Office of Health Disparities and the Office of Behavioral and Social Science Research. That's where the PRISM RFA (promoting reduction in intersectional stigma).
This RFA thought to advance measurement of intersectional stigma and examine the mechanisms path and pathways by which it impedes prevention outcome in heavily stigmatized populations. It was to look and develop and test interventions to improve HIV prevention outcomes among target populations in the US and worldwide. The goals that were asks in the RFA were that the investigators applied a concept of intersectionality. That multiple stigma identities and multiple discriminating forces should be clearly defined and justified.
The proposed population should be limited to key populations who are at substantial risk of HIV acquisition and experience high rate of stigma and discrimination. NIMH, NIMHD, OBSSR and NINR Nursing Research are together supporting eight awards. We'll hear more about some of these awards from the study teams PIs during the presentation today. So DAR continues to be very interested in theoretically driven research to advance measurements of intersectional stigma or discrimination, to examine the mechanisms and pathways by which there are barriers to HIV prevention and treatment, and to develop interesting interventions to address the impact to improve prevention and treatment outcomes.
So I'm now happy to introduce Harold Philips, the Senior Advisor and Chief Operating Officer for Ending The HIV Epidemic a Plan for America at the Office of Infectious Disease and HIV/AIDS Policy in the US Department of Health and Human Services. Mr. Philips has held many leadership and advisory positions among many components of the government including HHS, PEPFAR, HRSA, CDC and others. He's been a great partner and a good friend and an advocate and brings much experience to our side. Welcome, Mr. Phillips.
Harold Phillips: Thank you, Dianne, and thank you also to the Office of AIDS Research and the National Institute of Mental Health for this important workshop. Also as Dr. Goodenow said, also very timely workshop. I'm going to talk a little bit about EHE but also, I'm going to talk about this moment in time and how important this work is and the fact that we need to be both solution focused. Also take advantage of this opportunity to listen to others about what works and really look at the issue of systemic racism and how it connects to stigma and discrimination.
Many of you have seen this slide before about EHE, the Ending the HIV Epidemic Initiative, and our overall goal of the 75% reduction in five years and the 90% reduction in new transmissions within 10 years. The initiative itself sits on four pillars diagnose, treat, prevent, and respond. By working within these pillars, we believe that we will be able to make a difference and achieve the goals of the initiative. We've done numerous studies on the impact of stigma in public health that show how it detracts and keeps us from meeting our overall goals, both within the EHE initiative but also within the National HIV Strategy.
How stigma impact the way those racial and ethnic minorities, sexual minorities, immigration status, how all of that impacts accessing and remaining in both prevention and care services. When EHE first started back in February 2019, the federal government initiated a series of listening sessions across the country. Some of the things that we heard that need to be addressed stigma was one of those. Really taking a look at how we could combat stigma and address it within our service delivery systems.
EHE calls for the community to come together and be innovative and develop innovative approaches that will help us meet the goals of the initiative. At this point in time in our history, it is both encouraging the number of dialogues that have been happening and taking place. There seems to be this deeper unders- or willingness to have a deeper understanding of the impact before 100 years of trauma have caused among people of color and how systemic racism plays a part in all of this. I think as many of our previous speakers have said, COVID-19 also gave us the opportunity, I think, to stay in place and be open to listening and learning and facilitating those conversations as a result of us seeing on television and witnessing and reading the news reports of the tragic murders that have taken place over the last couple of months.
I think now we're at a place where both we can hear, listen, learn, and really think about what needs to be done and what we can do. I think coincidental but I don't believe in coincidence that-- We've talked about the National HIV Strategy. Today is the 10th anniversary of the release of that strategy which also has within it, the call for the reduction of stigma and discrimination against people living with HIV as a key step in this overall process.
I think the other thing with the strategy is that with the development of the strategy, again, very similar. The number of people from not only the federal government but the community also came together to participate in the development of that strategy. As we think about different ways to approach the issues of stigma and discrimination, we've also got to remember that the community has to be at the center and that the community also needs to be part of the solution development as well.
We've got a number of solutions that have been developed to reduce stigma over time, both in our Ryan White Program in the Bureau of Primary Health Care. We also have a number of policies and procedures that have been in place and yet, we recognized that it's not enough to just have those in place, that there must be more that is done. Some of the studies that we have had in the past, also include different ways to do need assessments and figure out what the community needs and what the community is saying.
We have a group of folks within the community, and I think you're seeing it as we learn more, that they- in the face of these challenges have developed tools for resilience and are resilient and it often can rise above. How do we capitalize on that as we look at systemic racism and stigma and discrimination? How do we build upon the strength of the communities that we have?
How do we look at some of the basic services such as housing and transportation that get in the way? How do we deal with that? How do we deal with the issues of trauma that are also impacting the ability of population to access and remain in prevention and care services? How do we develop messages that are affirming and positive and feature faces that are familiar with two individuals? How do we utilize social media and technology? There are a lot of ideas for consideration.
I think we'll have more as a result of this. I challenged us to become solution-focused to continue the dialogue and the hopeful path that we are on. Also, this is a whole of society initiative. For EAG, I commend my other federal colleagues for being part of this and for facilitating the dialogue and for being willing to listen and learn. I look forward to the solutions that we can enact on the local level.
Then at the federal government, we continue our work to create a framework and a platform for these dialogues to happen but again, the solutions have to be locally driven. I encourage us all to work together to end the HIV epidemic. Thank you.
Paul: Thank you. Thank you, Harold Phillips, and to all our welcoming speakers for these very important points for us to consider and take forward into this workshop and beyond. Moving forward, I would like to introduce the moderator of our first panel, Dr. Valerie Earnshaw. Many of you know her, have worked with her, and/or know of her work. She is an associate professor and a faculty scholar in the Department of Human Development and Family Services at the University of Delaware.
She will be the moderator of our next panel on conceptual frameworks. Dr. Earmshaw.
Dr. Valerie Earnshaw: Good morning. Hello, everyone. It's my pleasure to moderate this session on conceptual framework. We are going to hear from two speakers this morning who will lay a foundation for us in intersectional stigma. During the presentation, please add your questions to the chat box and then after the presentation, I will raise them to our presenters. First, we will hear from Dr. Lisa Bowleg.
Dr. Bowleg is a professor of Applied Social Psychology in the Department of Psychology at the George Washington University. She is also director of Social and Behavioral Sciences Core at the DC Center for AIDS research and the founding director of the Intersectionality Training Institute. After Dr. Bowleg, we will hear from Dr. Anne Stangl. Dr. Stangl is a social and behavioral scientist, president of Hera Solutions.
Associate faculty with the Department of International Health at the Johns Hopkins Bloomberg School of Public Health. Dr. Bowleg, I'll turn it over to you to get us started.
Dr. Lisa Bowleg: Thank you, and good morning. I would like to thank NIMH and the Office of AIDS Research for the opportunity to participate. In particular, I'd like to give a special thanks to Dr. Greg Greenwood for all of his work and bringing us all together to talk about intersectional stigma. I'm going to be speaking very briefly and giving an overview of-- Next slide, please.
What I want to do is give a general overview of intersectionality, intersectionality 101, I like to call it. Then I want to talk about intersectional stigma and intersectional discrimination and really give a conceptual overview of those terms, as well as some challenges and criticisms and things that I hope that we will discuss over the day as we try to get on the same ground with discussion with definitions of intersectional stigma.
Then I want to talk about the importance of prioritizing structure and system when we talk about intersectional stigma. Finally, I will conclude with a host of questions to guide us as we talk about what do we really mean when we're talking about intersectional stigma and discrimination. Next slide, please. The next one. Thank you. I always begin when I talk about intersectionality here because this is really where intersectionality begins.
This is Sojourner Truth, who I like to consider the original intersectionality theorists. Sojourner Truth is speaking in 1851 at an Akron Women's Rights Convention. This is her famous speech about Ain't I a Woman, and this is just a snippet of it. That man over there says that women need to be helped into caregiving. Nobody helps me and ain't I a woman. This is really-- She just continues this refrain and she's clearly a woman but the issue she's articulating is that because she's a Black woman, she is not entitled to all of the rights that a White women have.
I think it's really important that when we think about intersectionality, we're talking about a framework that comes out of it so the lived experience of women like Sojourner Truth and one that's picked up by Black feminist activists. What so tricky for us is trying to apply this framework that was not meant for research to do research. Next slide, please. This is one of many definitions of intersectionality and it's one that I advanced in an article in American Journal of Public Health in 2012.
Basically, what intersectionality is it's a critical theoretical framework or analytical framework, I like to think about it as such, rather than as a theory per se. It says that people's individual level experiences on their micro-level experiences really reflect interlocking discrimination or oppression at a larger macro level. It's the intersection of racism and sexism, and heterosexism and classism, ageism, and as you can see, we can go on and on.
Next slide, please. In terms of stigma, the original conceptualization of stigma comes out of sociology and this is Erving Goffman with his famous book. Stigma as Erving Goffman saw it was really something that was discrediting that was in the individual. This notion of spoiled identity. Stigma is the situation of the individual who's disqualified from full social acceptance. This person, the stigmatized individual is reduced online from a whole unusual person to attain a discounted one. This notion of individualistic notion of stigma is really found its way into how we're talking about stigma, even when we're doing so intersectionally. Next slide, please.
This article is this fantastic review of the stigma that I find quite insightful and very important to the work that we're going to be doing in this workshop. In this article, Ruth Lane and Joe Fayland talk about some of the problems with stigma that really resonate with some of the issues I'm having with it in my own work. Next slide, please.
One of the things they say that's problematic with stigma as a concept is that we ended up focusing mostly on the individual and not on the people who are doing stigmatizing. The quote in this article, the term stigma directs our attention differently than a term like discrimination. In contrast to stigma, discrimination focusing attention on the producer.
The person who's doing the discrimination, the actual actors [inaudible 00:40:40] rather than the people who are the recipients of these behaviors. Thus, the terms we use could lead to different understandings of where responsibility lies. One of the problems with intersectional stigma as I see it is that so much of that puts the focus on the individuals, our language when we're talking about stigmatized- people would stigmatize identity rather than the people who are discriminating and doing the stigmatizing based on those identities.
Next slide, please. Two points. There are lots of points, but I want to focus on two problems. One of the problems with intersectional stigma is that a lot of the definitions we have are vague. They don't really get at what exactly are we talking about when we talk about intersecting stigma. As I said, they often focus on the individual. This, for example, is the definition of intersectional stigma or a parenthetical definition produced in the concept clearance for this term. It describes intersectional stigma as multiple stigmatized identities which gets to some of the issues, I was just talking about but linking Fayland. Next slide, please. The other issue with many conceptualizations of intersectional stigma is that they ignore the role of power and structure. From an intersectionality perspective, there's no way that you can be talking about intersectionality without talking about power and structure.
I highlighted this article because this is something that Richard Parker and Peter Aggleton pointed out in 2003 when they were talking about HIV stigma and the importance of bringing back power and domination to our work on stigma. One of the things they asserted in this article, we need to reframe our understanding of stigmatization and discrimination to conceptualize them as social processes that can only be understood in relation to broader notions, such as power and domination. This focused on social processes, such as discrimination. Next slide, please.
I want to talk about some benefits of talking about intersectional stigma or intersectional discrimination, whatever we call it, but making sure that we're doing it in terms of structure or systemic approaches. Here I turned to Kim Blankenship's work on structural interventions. The way that Kim Blankenship and colleagues define structural approaches and that these are approaches that locate the source of public health problems in the social-economic and political environments that shape and constrain the ability of individuals to engage in health protective behaviors. This is an approach that really fundamentally shifts how we define problems and also the interventions that we take to them. Next slide, please.
One benefit of a structural approach to intersectional stigma is that most of the barriers that we're talking about, whether it's HIV prevention or COVID-19, these are structural problems. There's so many overlaps between COVID-19 and HIV. This is a headline from The Washington Post, income emergence as a major predictive coronavirus infections along with race. Of course, when we talk about race, that's problematic too because that's putting the problem within the individual rather than what we're really talking about from a structural and intersectional perspective is racism and structural racism and how that imposes barriers that constrained the opportunities for individuals to protect themselves and their community from whether it's HIV risk or COVID-19. Next slide, please.
Another advantage of talking about intersectional stigma and intersectional discrimination through a structural lens is that it allows us to focus on the root causes. This is a chart from the New York Times a few weeks back where they looked at different gaps between white people in the US and black people across a variety of metrics, whether it was household income, unemployment, homeownership. When you pull back, it is not at all surprising that so many of the inequities that we see, whether we're talking about HIV prevention and HIV treatment or COVID-19 or traced to a lot of these inequities that have structural underpinning, intersections of structural racism, structural poverty just interlocking. I think that there's a real opportunity for us to go bolder as we look for solutions to many of the problems that we'll be discussing today. Next slide, please.
The other issue or the other advantage of talking about intersectional stigma and discrimination using more of a structural lens is this really important point that Greta Bauer, who is an intersectionality scholar and epidemiologist makes in her work of about why when we're talking about intersectionality, it's important that we focus on social processes. The same thing that Parker and Aggleton talked about. What she says is focusing primarily on social identities. This notion of stigmatized identities or positions runs the risk of continuing to reinforce the intractability of inequity, albeit in a more detailed or nuanced way.
This notion that people are, your skin color is what your skin color is, your race is what it is, your sexual minority status is what it is, your gender identity status is what it is. Focusing on those which are really not modifiable, nor should they be is problematic rather than focusing on things that we can modify. We can intervene against stigma and we can intervene against discrimination and people who are doing the stigmatizing and the discrimination. Next slide, please.
What I want to do now is lead just a bunch of different questions. I just want to fill out that I think that we need to talk about. One of them is rather than focusing on individual identities or stigmatized identities and vulnerable populations, flipping the script, and asking what are some of the structural facilitators and barriers to HIV treatment and prevention? From whose vantage point are we censoring or defining problems?
A core tenant of intersectionality is that when we are looking at any problems, our starting points has got to be the group that is mostly oppressed that we look at and we want to understand from their position, not in terms of how they fail in terms of more privileged groups, but really trying to understand all of the barriers and everything from their perspective.
Who has the power to implement the changes we see? Often, we expect changes from groups who just do not have the power. How would we engage the community, particularly community-based organizations who have been doing this work from the start and who are rendered vulnerable by structural inequality? What types of intersectional discrimination do we need to be focusing on? Are there ones that are riskier for certain groups?
What structural interventions are possible and what are the sources of strength, the assets, the resilience that already exists in communities that we can harness to prevent HIV and fulfill COVID. I will end there. Thank you.
Dr. Valerie: Wonderful. Thank you very much, Dr. Bowleg. We are now going to turn things over to Dr. Stangl.
Dr. Anne Stangl: Hi, everyone. Good afternoon. It's my pleasure to be here with you today virtually to talk about the health stigma discrimination framework and its implications for intersectional stigma research. The idea for developing a cross-cutting health stigma and discrimination framework emerged in 2017 at a meeting of health stigma researchers that was hosted by the NIH Fogarty Center at NIMH that Dianne mentioned a bit earlier. At this meeting, we discussed how researchers studying health-related stigma has tended to focus quite narrowly on a specific disease or health condition.
This approach has led to theoretical silos despite the fact that the stigmatization process is fairly similar across health conditions and context. For example, we identified seven obesity frameworks, seven HIV stigma frameworks, and seven mental health- sorry, five mental health stigma frameworks when preparing the framework paper. In addition, health stigma frameworks tend to concentrate on psychological pathways among individuals.
Few explore the social and structural pathways leading to stigma and few include intersectional stigma. As a result of this, current health stigma frameworks really limit the researcher's ability to inform the multi-level interventions required to meaningfully influence the stigmatization process. This siloed approach impedes comparisons across stigmatized conditions, and it also impedes research on innovations to reduce health-related stigma and improved health outcomes.
In response, we developed the Health Stigma and Discrimination Framework, which was published in early 2019. The framework builds from existing conceptualizations of health-related stigma and from the practical experience of the co-authors in designing stigma reduction interventions for a range of health-related stigmas. I just want to take a moment here to acknowledge my co-authors who you see pictured here.
Collectively, we brought experience from stigma research on mental health, HIV, leprosy, cancer, tuberculosis, and obesity. I think the resulting framework really benefited from this diversity of experiences. Our intent was to provide a broad orienting framework similar to the Pearlin's stress process model to give conceptual organization to diverse lines of research that are underway across disciplines.
I'm going to spend several minutes on this slide in order to walk you through the process and define some of the key terminology. The Health Stigma and Discrimination Framework articulates the stigmatization process as it unfolds across the socio-ecological spectrum in the context of health, which can vary across economic contexts in low, middle, and high-income countries.
The process can be broken down into a series of constituent domains, including drivers and facilitators, stigma marking and stigma manifestations, which influence a range of outcomes among affected populations, as well as organizations and institutions that ultimately impact health and society. The first domain refers to factors that drive or facilitate health-related stigma. Drivers vary by health condition but are conceptualized as inherently negative.
They can range from fear of infection through casual contact for communicable diseases, to concerns about productivity due to poor health for chronic conditions, to social judgment and blame. Facilitators, however, may be positive or negative influences. For example, the presence or absence of occupational safety standards and protective supplies and health facilities can minimize or exacerbate stigmatizing, avoidance behaviors towards populations with infectious diseases by health care workers.
Drivers and facilitators determines whether stigma marking occurs, in which a stigma is applied to people or groups related to either a specific health condition or across the other perceived difference, such as race, class, gender, sexual orientation, or occupation. Intersecting or intersectional stigma occurs when people are marked with multiple stigmas. Once a stigma is applied, it manifests in a range of stigma experiences and practices.
Stigma experiences can include experience discrimination, which refers to stigmatizing actions or omissions, for example, failure to include ramps for people with disabilities that are prohibited under international human rights law. For example, losing housing because of one's HIV status. Experienced stigma refers to stigmatizing actions that fall outside the purview of International Human Rights laws such as double gloving or avoiding frequenting somebody's business. Another stigma experience is internalized or self-stigma, which is defined as a stigmatized group member's own adoption of negative societal beliefs and feelings as well as the social devaluation associated with his or her stigmatized status. Perceived stigma which refers to perceptions about how stigmatized groups are treated in a given context, and anticipated stigma, which refers to expectations of bias being perpetuated by others if their health condition becomes known are also classified as stigma experiences in our framework. Lastly, secondary, or associated stigma refers to the experience of stigma by family or friends of members of stigmatized groups, or among health care providers who provide care to members of stigmatized groups. That's also included understatement experiences.
Now let's take a look at stigma practices. Stigma practices can include stereotypes, prejudice, stigmatizing behavior, and discriminatory attitudes. In the framework, we consider stereotypes and prejudice as both drivers and manifestations as they both fuel and are reinforced by the stigmatization process. We postulate that stigma manifestations go on to influence a number of outcomes for affected populations, including access to justice, access to an acceptability of healthcare services, uptake of testing, adherence to treatment, resilience, or the power to challenge advocacy.
They also influence outcomes for organizations and institutions, including laws and policies, the availability and quality of health services, law enforcement practices, and social protection. While the framework is specific to health-related stigma, it recognizes that healthfully that stigma often co-occurs with other intersecting stigmas such as those related to sexual orientation, gender, race, occupation, and poverty. Incorporating intersectional stigma into the framework is necessary as stigma manifestations and health outcomes may be influenced by a range of stigmatizing circumstances that must be considered to understand the full impact of stigma. What is different about the new framework? Whoops, okay, there's some missing graphics, but that's okay. What's different about the framework?
The Health Stigma and Discrimination Framework is different from many other models and that it does not distinguish the stigmatized from the stigmatizers. The absence of this dichotomy is intentional as we seek to challenge the us versus them distinction that enables people to set others apart as different from the norm, a key component of the stigmatization process.
We seek to move away from psychological models that sees stigma as a thing which individuals impose on others, and instead emphasize the broader social, cultural, political, and economic versus that structure stigma. Removing the us versus them dichotomy also makes the framework more palatable to change agents, such as community leaders, advocates, and policymakers, as it highlights that all persons can act as change agents and underscores the need for self-reflection and awareness of biases.
Another difference from previous frameworks is the separation of manifestations into experiences and practices. This distinction clarifies the pathways to various outcomes following the stigma marking phase of the process. Those who experience internalized, perceived, or anticipate health-related stigma face a range of possible outcomes, such as delayed treatment, poor adherence to treatment, or intensification of risk behavior that may diminish their health well-being.
Stigma practices, on the other hand, highlight how the stigmatization process can generate or reinforce stereotypes and prejudice towards people or groups living with or at risk of various health conditions and foster discriminatory attitudes that fuels social inequalities. We also differentiated outcome for affected populations from outcomes for organizations and institutions.
Our framework seeks to demonstrate that stigma experiences and practices influence both affected populations and organizations and institutions, which then together affect the health and social impacts of stigma. By articulating these outcomes, the framework highlights the need for multi-level interventions to respond to health-related stigma. It also focuses attention on the far-reaching influence of health-related stigma on societies as well as individuals. How do we use the framework?
One way is to guide the development of interventions. The framework can be used as a tool to facilitate discussion among researchers, program implementers, and policymakers. For example, key questions to discuss include, what are the drivers of specific health-related stigma and discrimination in a specific country or context?
What are the facilitators? What others may intersect with the health-related stigma? How does the health-related stigma manifest? Answers to these questions can help determine where public health practitioners, clinicians, and policymakers should focus their efforts.
In terms of where to intervene, ideally, we want to stop stigma marking from occurring. Interventions often focus on the drivers and facilitators of stigma. While we would like to prevent stigma from being applied, we also need to be prepared to deal with the manifestations of stigma. This could include psychosocial support for people living with a specific health condition, or legally to cope with discrimination.
It can also include training for healthcare providers or police to overcome stereotypes and discriminatory attitudes, or the development of new laws or policies to protect against discrimination. In addition, it's our hope that the framework will enable stigma researchers across disciplines to standardize measures, compare outcomes, and build more effective cross-cutting interventions. Researchers can use the framework to generate research foci to explore multiple health issues and consider the intersections between multiple identities, social inequalities, and health issues.
Implementation science approaches can advance how we tailor and apply the framework to guide stigma and discrimination reduction interventions and policy. What are the implications for intersectional stigma research? The Health Stigma and Discrimination Framework can also inform discourse in action to address intersectional stigma. However, you need to include a broad range of stakeholders in discussions about intersectional stigma, not just health experts. The stigmatization process is ubiquitous, so the framework applies regardless of whether it's a health-related stigma or identity or social stigma that is being discussed. The social impacts of stigma and discrimination are just as important as the health impacts, therefore addressing the intersectional statements that combine to create either advantages or disadvantages for people is critical if we are to achieve both health equity and social justice.
In conclusion, the health stigma discrimination framework can be used to develop or adapt interventions to address health-related and intersectional statements at multiple socio-ecological levels. We believe that research and interventions inspired by a common framework will enable the field to identify commonalities and differences in stigma processes across diseases and identities and amplify our collective ability to respond effectively and at scale to this major driver of poor health and social outcomes globally. Thanks very much.
Paul: Perfect, thank you very much, Dr. Stangl. Dr. Bowleg, I think you can come back and join us. We have a few minutes for Q&A, so I'd like to invite folks in the audience, if you have questions, feel free to use the Q&A feature, and I can read out your questions, or just raise your hand and we'll invite you to ask your question. I don't see any questions yet, so I'll kick us off.
Dr. Bowleg, I was reflecting on your comment that we are applying a framework that was not meant for research to research and I was curious and both of you have touched on this a little bit about- from your perspectives, what are researchers and letter interventionists missing, generally, when they're applying this conceptual framework to their work? In other words, what are some of the blind spots that we may be having that we should think about in our workgroup? These blind spots that might be preventing us from moving this agenda forward.
Dr. Bowleg: One of them would be that a lot of social-behavioral scientists are trained in these individualistic disciplines. I'm a social psychologist by training. All of my training, whether they're methodologies theories, very much individualistic focused. When we're talking about the complex multi-level that it's the individual within the context of the structural forces, that's where it gets really messy. How do you measure those things? How do you measure and assess structural racism? How does that come into the model? That's a big issue.
Another one is just around measurement. The way that we've thought about measurement is in this very uni-dimensional way. There are excellent, well-validated measures on racial discrimination and excellent on sexism and heterosexism and all of that, but this notion that all of these are interlocking, then how do you assess that in research on stigma? Those are just two, there are many more. Those are just two of the complexities with trying to apply this to research and intervention work.
Paul: Terrific. Dr. Stangl, do you have anything to add? I also see we have a question for you in the chat box.
Dr. Stangl: No, not much to add to that. I think that was really spot on. I think really, it's that issue of dealing with individuals as opposed to the societies in which they live. I think that's where we need to go.
Paul: Great. Dr. Stangl, we have a question for you in the chat box, which is what has been your experience explaining your framework to non-academic audiences, has it been easily understood? This is a great question for you because you have a good experience with this.
Dr. Stangl: Actually, that's a great question. Thank you for asking it whoever asked it. The reason I love this framework so much is actually because it's really easy for people to understand. They can see their communities in it. It really applies to any kind of stigma, whether it's related to race, whether it's related to health. Of course, we call it the Health Stigma and Discrimination Framework because in that it came out of that health stigma research convening, but really, it's very widely applicable. I think people really like to see that we're not pitting the stigmatized against the stigmatized, that really, when you're talking to policymakers, when you're talking to government leaders that really shut the conversation down when people look at a framework and they see, "Oh, my gosh, if I'm not the stigmatized, then I must be the stigmatized," and it really shuts off conversations.
I think letting people know that anyone can be on either side right at any time for different identities, that's really, really important. I think also people like to see that you have manifestations and how these manifest for both the individuals and the institutions and organizations, so you can see how stigma in and of itself leads to these discriminatory laws and practices and policies, discriminatory policing. It's a little bit more obvious for people to see how do I personally or how does my organization, whatever it is I do for a living, how is stigma applicable in that context? I've found it actually a pretty useful tool, whether you're talking to researchers or program implementers or advocates.
Paul: Great, Big thanks to Christina Rodriguez Hart for the question. I should have read that. We do have another from Paul Geist, which is, knowing the interplay of the personal and the social with respect to stigma and discrimination, what would be your guidance on how to best approach the full dimensions of these dynamics? The top one.
Dr. Bowleg: Is that for me or for Felicia?
Paul: It could be for either. Sure. Knowing the interplay of the personal and the social with respect to stigma and discrimination, what would be your guidance on how to best approach the full dimensions of these dynamics?
Dr. Bowleg: I think we know quite a bit about the interpersonal dynamics. We don't know so much about the structural interplay with the interpersonal and the social. To give a concrete example, our work on intersectional stigma is looking at the intersectional stigma for gay, bisexual, and other men who have sex with men, these are black men, right? I'm very much interested in the way that stigma operates even in the visuals. You show up for an appointment, you're sitting in a waiting room, none of the photos or posters on the waiting room look like you. The security guard is asking for five pieces of ID for you to get into the clinic.
There are all these different ways that structure creates barriers before there's even an interpersonal reaction in the example of the posters. I think we need to build off of what we know about what happens in terms of interpersonal, but we also need to look at, "Okay, in terms of interpersonal stigma, what are the consequences for the physician who doesn't prescribe PrEP because he thinks that black, gay, bisexual men who have sex with men that they're more from the skew as well? All of that. What are the consequences? This is what I mean by coming at it from another direction. I think that we're too biased towards these individuals in an interpersonal direction and we need to do the hard work of trying to understand it from the other level. That would be my answer.
Paul: Great. [crosstalk] Dr. Stangl, do you have anything to add? Otherwise, we'll have another-
Dr. Stangl: I think she's correct. I see we have a lot of other questions and we only have like three minutes.
Paul: Well, from Janet Tram, we have a question. You said that we need to remove the emphasis on "us versus them", but isn't that the essence of the stigma process?
Dr. Stangl: That's always the clincher. I think the process itself, that's what happened. There's a difference based on whatever it is, a disease or identity and that causes this "us versus them". That is what happens, but we didn't want to call that out very specifically in the framework. We wanted to show people how these things manifest, what the process is, and where you can stop it.
I think mainly one of the reasons why we did that, like I was saying, is to enable us to be able to foster discourse around this issue because once you start focusing in on the "us versus them", that's the stigmatized versus the stigmatizer dichotomy and it's not really helpful in moving forward in terms of conversations. I think, depending on what you're doing, obviously, what kind of research you're doing, whether you're testing pathways or all of these different kinds of things, it may be useful for you as a researcher to look at that distinction, to look at the people who are experiencing stigma versus the people who aren't. When you're thinking of this as a tool to inform societal discourse and action and engaging policymakers, we just found it more useful to leave that distinction out.
Greg: Great. Let me give a round of applause, everyone, to Dr. Earnshaw, Stangl, and Bowleg for a really fantastic session on the conceptual frameworks. As you can see, there are so many more questions and we'll have plenty of time in our virtual workgroups to sort some of these thorny issues out, but I can't tell you, the three of you, how grateful I am for your help.
With that, let me introduce George Ayala, who is the executive director of MPact. My computer's running out. I'm having a technical hiccup right as I'm introducing George. I'm so sorry. George, thanks so much for your patience there. George, the executive director of MPact Global Action for Gay Men's Health and Rights, and with that, let me introduce you to George and let George take it away.
Dr. George Ayala: Hi, everyone. Thank you so much to MIMH for today's research and a special shout out to you, Greg. I appreciate the invitation. It's a real honor to join you. Could I see the first slide here? There you go. It is really my honor to be a part of this and to share the panel with our distinguished speakers. Next slide, please. We can go. In speaking with my colleagues on the panel-- Can we go back one, please? I guess I could focus on this myself. My colleague on the panel asked me to open the panel with a couple of opening remarks and then I'll hand over to them.
My first slide here is really a slide about why intersectional stigma research and the why here is because the social shape of health and health disparities is too often ignored and misunderstood. Health and health disparities, including HIV and more recently COVID-19, are not evenly distributed in general populations. The disease disproportionately affects some groups and predictably so. Economic disenfranchisement, racism, sexism, homophobia, transphobia, xenophobia are not mutually exclusive phenomena. They converge to hurt health and in particular, in this case, HIV disparities bear that out. The multidimensional nature of oppression has important implications for policy, research, and practice.
I felt compelled to kind of say a few things about the role of community and you'll hear our panelists speak to this issue as well. The role of the community here is to articulate problems, to theorize about the nature of those problems, and to come up with solutions that are best fit for purpose. Community partner in policy research and practice, and here, I think I want to caution our colleagues who are conducting important research not to essentially the role of community. Oftentimes we see communities sidelined or relegated to community advisory boards or as labor to collect data but sell them treated as equal partners which I think is particularly important in stigma research. Also, communities expose power imbalances, underlying health, disparities, and partnerships formed to respond to those disparities.
I wanted to call attention to a seminal work, This Bridge Called My Back, and there's quite a bit to talk about. I think there are entire courses devoted to this work, but this work surfaces several critical questions which they give rise to contemporary understandings of intersectional stigma. What are particular forms of oppression faced by women of color, socially marginalized groups across the broad range of sociopolitical situations like war and conflict? This is a collection of work that had intended to reflect an uncompromised definition of feminism by women of color. It contained prose, poetry, personal narrative and analyses by African American, Asian American, Latina and Native American women in the US, and in doing so, it really expanded modeled ways for expanding engagement of different viewpoints and voices to bring additional ideas to bear on the challenges, the day to day challenges faced by women of color.
In here, there are questions about how are multiple stigmatized identities and group memberships experienced, how are multiple co-occurring forms of oppression experience. They grapple with another question in what ways have oppression and suffering been silenced or overlooked, how has oppression impacted families and communities, and how do marginalized groups organize to survive and thrive, to keep body spirit, family, and communities intact. This work, as I said, was published back in 1981 and really proceeds Kimberlé Crenshaw's very critical work on intersectionality.
Here again, I want to draw attention to some of the community work that emanated in the HIV sector in the early 2000s. In 2002, the National Gay and Lesbian Task Force in the US commissioned the monograph titled Say It Loud – I'm Black and I'm Proud. Authors of the monograph wrote race; gender class and sexual orientation are not separate identities. These identities are experienced holistically and intersectionally and even before, as you see, intersectional stigma was something taken seriously by research communities, communities on the front lines were already signaling the issue and the importance of addressing that issue in practice.
That monograph went on to provide several important recommendations that resonate still strongly today. I want to also draw attention to another piece of work. Here, similarly to the monograph that I just mentioned, in 2006, the Institute for Gay Men's Health under my direction published 46%, a special issue of their magazine called the Scarlet Letter. The issue was in response to the startling announcement by the CDC that nearly one and two black gay men in the US were living with HIV. In that special issue of the Scarlet Letter, there was an article titled Black Gay Men's Lives Matter, a foreshadowing of what would come. It powerfully imagined an HIV response that black gay men mattered. We wrote if black gay men mattered, HIV prevention interventions would be democratically developed and framed in the language of love, intimacy, connection, and sex. HIV prevention would honor the knowledge and wisdom black gay men bring to bear and creating solutions that make sense to their day to day realities. We would embrace this knowledge as credible evidence.
It goes on to write if black gay men mattered, they would be the point of reference as we strategize our HIV responses. We would begin to expose language that shames and isolate. We would identify when and how moralistic attitudes about sex and drug use negatively impact on the lives of black gay men. Homophobia and its many guises would be exposed. We would unapologetically name systemic racism, class discrimination, and gender violence when it was happening and point out how it was hurting.
With that, I want to hand over to our panelists. Perhaps beginning with Justin Smith from Emory University. I've asked each of the panelists to introduce themselves. Justin, if you could turn on your mic and I think Justin and Rafaelé will be speaking together. Thanks, guys.
Justin Smith: Great. Good morning, everyone. My name is Justin Smith and I serve as the director of the Campaign to End AIDS at Positive Impact Health Centers, which is an HIV community-based organization in Atlanta, Georgia. I'm joined with my colleague, Rafaelé Narváez.
Rafaelé Narváez: Good morning, everybody. My name is Rafaelé Narváez. I'm the Co-Founder and Director of Health Programs in Latina Salud and also, I serve in PACHA [inaudible 01:20:47].
Justin: Rafaelé and I also have the honor of serving as the co-chairs of the Stigma and Disparities Subcommittee of the Presidential Advisory Council on HIV/AIDS or PACHA. We just wanted to give thanks to the organizers of this meeting and to Rafaelé for really navigating us through this really important conversation. What Rafaelé and I will offer is a community-based perspective on intersectional stigma.
I want to begin our conversation this afternoon with a quote from the great black lesbian poet, Audre Lorde, and she invites us to enter this conversation in this way. She says that there was no such thing as a single-issue struggle because we do not live single-issue lives. One of the opportunities and hopes that I have for intersectional stigma research is it's really an opportunity for the conduct of HIV research to more closely mirror the lived experiences of the communities to which researchers are accountable. I think as has been talked about in the first couple of presentations, it's a framework that can provide empirical data to support the development of the structural interventions that we know are needed to get at the root causes of stigma.
As with all of our research, there are specific challenges. I want us to just name three. The first is thinking about the vast impact of this work and how the work needs to be visible to communities outside of the traditional academic journal route. What are the types of opportunities that various social media platforms make possible for the research to have a broader audience? I wanted to lift up one potential venue for this which is a podcast that's hosted by one of the mothers of the intersectionality theory, Kimberlé Crenshaw, which is called Intersectionality Matters!. You can find that podcast wherever you obtain your podcast media. The next piece is to think about how given the importance of this work, how it can be translated quickly into both programmatic and policy solutions. Lastly thinking about how community organizations cannot just be a part of the work but actually can lead some of this work. I know Rafaelé has some additional thoughts on this part.
Rafaelé: Thank you, Justin. Absolutely. As mentioned before, community-based organizations and serving minorities have a big role in this portion. Somehow when research gets started, community-based organizations, some minorities have never been taken in serious or never be taken as a part of the group they need to initiate research. We always end up at the end of it recruiting people for the study but not being part of the study itself. That creates stigma, more discrimination when we tried to recruit some of our clients for the studies. They just mentioned to us, "We're just one more number, give me a $25 gift card and they don't really care about how and what we feel or how the work needs to be done. We're just another number." Thank you, Justin.
Justin: Thank you, Rafaelé. One other opportunity that I want to name is that doing this work provides an opportunity to really center and acknowledge the contributions of both black feminist thought, the work of other women of color and black women's intellectual labor, and really laying the foundation for these conversations. We had a really tour de force presentation from Dr. Lisa Bowleg, who was one of the first scholars to really bring intersectionality into public health. Thank you, Dr. Bowleg, for your work.
I think this also provides an opportunity for us to think about how this works feeds into other types of interventions that are not as popular or thought about in public health which are connections to art and cultural production, and I'll talk a little bit about that later. I think because this response to the call to action that Dr. Ayala framed at the very beginning about how black gay men's lives matter and how that shows up and that can be done in art and cultural production in a very powerful way.
As I talk about the importance of art and cultural intervention as a site for this work, we know that alone will not produce the types of changes that we want to see, and we know are necessary. We need to do multilevel structural interventions and that's something that I hope we will spend more time talking about through the course of these workshops. We know that public policy intervention do have this broader potential reach, but I think what I would offer is that when we think about art and culture, these have a way to really do that deep hearts and minds transformation that we know is also a part of this process to address stigma.
I want to quickly look at four examples of what I mean by this. The first is a production called One & Two which in fact takes its name from the 2016 CDC study that projected the lifetime risk of HIV acquisition among different communities. What it found is that if we do nothing, one in two black men can be expected to be diagnosed with HIV in his lifetime, and this play really takes that as a starting point and provides I think a very powerful response to the chart that Dr. Ayala gave us at the outset about how does an HIV response look that makes black gay men's lives matter. The play offers that in a very forceful way. We co-produced a version of this on Zoom a couple of weeks ago. We had a really robust conversation. Again, that's just one example of how we can bring these conversations to the community in a way that resonates with their needs.
I'm also involved with a CDC-funded initiative to develop an interactive theater workshop that will talk about stigma as it relates to HIV with black and Latin X young adults. That will be happening tomorrow, in two days, but that also provides another way for community to be engaged and at the center of these conversations. Another example of this is the ViiV Healthcare produced a play called As Much As I Can which was actually scheduled to come to Rafaelé's organization down in South Florida, but due to the COVID-19 pandemic, it had to be postponed. This work was developed through a series of qualitative interviews done with young black gay men living in Jackson, Mississippi and Baltimore, Maryland producing an interactive spirit that centered how black gay men navigate stigma around HIV.
The last example of this is the cultural phenomenon, the FX show called Pose which centers the lives of black and Latin X trans and queer individuals in the '80s and '90s as they navigate their identities and respond to HIV. This is the way that this conversation is happening on a broader scale within our country. I offer these as just examples of what this can look like outside of the traditional public health framework. As we talk about measurement, I think it's important that we try to have community-engaged participatory methods whenever possible, so that the community can be involved in conducting this research, particularly as it will also strengthen the internal capacity within these communities. That capacity building piece is really important. Thinking about closing the loop, making sure that we respond and not just with journal articles, to make sure that the data are presented back to communities in ways that are consonant and impactful for them. Rafaelé, did you want to add anything here?
Rafaelé: For credibility and community trust, we need to be the end results of many of the studies, of many of these projects that have come. We're part of it. We are recruiting the individuals. The individuals come into their organizations to be part of what the researchers want. At the end of the day, we don't even get to see the end results of it, which brings distrust in the community. How can we make this connection between one and another if we're not working together? Building capacity between community-based organizations, research health departments, and policymakers is very, very, very important. I really want to make a note of it and hopefully, we move forward and start working together.
Justin: I know that we'll spend a lot of the day talking about methods. I think while it's important that we do deepen our understanding of quantitative methods to help tell this empirical story, I don't want us to lose sight of the power and the value that qualitative methods can bring to this type of work in particular. Given the importance of narrative and storytelling, and how vital that is to moving this work forward.
As we moved towards a close, I want to offer up some additional questions that I have around something we need to consider. One that I'm particularly keen on is one of the principals in Atlanta that are implementing the federal Ending the HIV Epidemic strategy and Rafaelé is as well. We're really interested in understanding how this work can really envisage more fully with the EHE plans that are coming forward because we know that that's the way that we can move the work forward. What does that connection look like?
I think importantly and other presenters have hinted at this and I wanted to bring a finer point to what Dr. Ayala offered at the beginning, we must be sure that in the conduct of intersectional stigma research, we don't actually reify the structures of power and domination in the conduct of the study that we're doing. That's really, really important. I think it's important that we also continue to really build connections with people that are doing work outside of public health. As we know that many of the structures that we're talking about are not in the purview of public health, we need to make sure that we're connecting with people that have purview over those other systems. As Rafaelé mentioned, to continue to build trust with community leaders and policymakers is vital.
I'll leave us with the notion of this work as a form of bearing witness. I wanted to close with this quote from the great black gay writer and scholar and just everything, James Baldwin. He says that I had to accept this time we're in, that part of my responsibility as a witness was to move as largely and freely as possible, to write the story, and to get it out.
I think that is an apt charge for our work here today. To be those that bear witness to the uprisings and the changes that are happening, and to make sure that the story lives on and that we actually do things to change it. I'll stop there. Thank you so much.
Dr. Ayala: Omar? Omar, you're up.
Omar Sharif: Hello, good evening from the Netherlands. My name is Omar Sharif. I lead the Stigma Index team in the Global Network Of People Living With HIV. I'm also a drug user living with HIV, and I'm also an advocate for rights-based approach in AIDS response. In my role as a community activist, we did a lot of research, because we always do our advocacy based on evidence that we collected from the field.
I would like to start my presentation with this statement, of the situation that we're facing right now in our community, especially the key population living with HIV, has been living with stigmatized and discriminatory attitudes from our own society, simply because we have different ways to live our life. This statement is based on our life experience, PLHIV as the rest of other members of society, we have various circumstances and condition to live with. The only difference with us is when we try to live our life based on our circumstances and condition, the society put us on the bottom of the pyramid of society itself.
This is a fact that this situation is by design and have severally impact to our daily life. We've been trying to do something about it. We've been talking about HIV-related stigma for more than three decades, but still, we are facing the same problem right now. I think the question I would like to ask is, are we doing what's needed or not? That also applies in the context of our topic today, which is intersectional stigma. Are we looking at the right factors that influence intersectional stigma?
I think some of our presenters previously mentioned that there are more factors that need to be taken into consideration. From our own experience, we do think that there are a lot of socioeconomic factors that are still left out. We need to look at it more and pay more attention, for us to be able to have a better understanding on this issue. We need to start thinking of, "Should we start looking at the economic capacity, class, educational background and also gender or sexual orientation, when we talk about intersectional stigma?”
The next point that I wanted to say in this opportunity is when we talk about measurement and intervention. Again, we feel that measurement and the investigation process and the result of that process should be translated into concrete action into policies and practice. For our community, this is the reason why we involve in research because we want to change the situation based on the knowledge that we have and based on the findings from this investigation or measurement process, to ask the question that really matters right now is, do we see a good balance between measurements and intervention?
I will give you one example, Stigma Index, which has been implemented widely, worldwide for more than a decade, implemented in more than 100 countries, we haven't seen a lot of effort to use the data that we collected from this process, for advocacy or to inform the development of policy or program. We need to really understand that in the future we need to do or have more balance on measurement and how we can make sure that the results from our measurement, will be a follow-up with concrete action. We recognize that there's a lot of challenge to address findings from the measurement process. I think it's safe to say that a lot of intervention that was designed or created as a result from the stigma measurement, tends to be only addressing partial issues. A lot of stakeholders at the national level tend to choose the safe way in addressing the results. Most of the follow-up action from the findings is awareness-raising or building or improving the capacity of healthcare workers, but it's very rare that we see human rights-related issues or criminalization issues as follow-up appropriately after the finding is published.
Another thing I want to mention about measurement and intervention is also, there's a lack of focus on internalized stigma among PLHIV. This is, again, based on our experience. We know it's extremely hard to change the world around us, but we can change ourselves and to me, that really contributes significantly in improving the quality of life of our community.
We need to really think of how we can address this issue of internalized stigma among PLHIV and how the connection between internalized stigma and the environment outside us. Maybe we never know if in a setting where most of the PLHIV community have managed to deal with the self-perception on living with HIV. We would love to see how the society around that particular community in that particular setting reacts to that attitude from the community itself.
Lastly, I wanted to briefly highlight on community engagement in research and engaging with researchers. I think George mentioned in the opening of this session that we still see some issues in our engagement, but for us, again, our position is very clear that PLHIV community is the end beneficiary of HIV-related research and we need the space, which will allow us to specify our priority throughout the process.
I think what we really want to see in the future is the collaboration between the researcher and our PLHIV community needs to be safe based on a mutual benefit. We want to see more balance power dynamic, not just assign us to sit on the advisory board or just to collect the data, go out to the field and collect the data, but we want to also contribute our thoughts and to let you know that this is what we want the process to focus on. We also want to have some sort of knowledge transfer process happening when we engage with research and researcher, because for us, it's important to build our own capacity and especially this [unintelligible 01:42:05] skills and ability in having or being able to collect that and to do it, so the data is presentable and reliable, it's very important for our advocacy work. I think I'm going to stop here. Again, thank you so much for the organizer for giving us the opportunity to share our thoughts. Thank you.
Dr. Ayala: Thanks so much, Omar. I really appreciate it. We had been granted another five minutes, so we're going to be continuing into our break time. Our apologies, I hope you all will hang in there with us and Laurel is up next, Laurel, would you introduce yourself?
Laurel Sprague: Yes. Hello, colleagues. It's an honor to be here, and I was hoping we would be granted five additional minutes. I'll try to be brief. My name is Laurel Sprague and it's wonderful to be with so many respected colleagues, some I've known for quite some time. I've decided to introduce myself by saying that I've been involved in participant observation, HIV stigma study for three decades and those who know me will track that, that means that I was diagnosed almost 30 years ago with HIV and I've been participating in observing what it means to have to experience HIV stigma in a time sense largely working with networks with people living with HIV.
Sorry, I can see my lighting just got weird, I should say good evening from Geneva to everyone who is here. Although most of the research I've done has been a part of network to people living with HIV in communities, I'm no longer in a community group now. I work for the Joint UN Programme on HIV/AIDS leading the community engagement division. Let me just share a few thoughts that I've been working on as I think about intersectionality in HIV and stigma and communities. I'd like to start by reflecting for a minute on an article that George and I wrote a year or two ago with a few co-authors on participatory practice in HIV stigma research, in which we argued something that I think we firmly believe, which is that, well, much research, maybe all research should be community-led and should prioritize the needs of communities.
This is especially true when we're talking about stigma research because of the specific power dynamics that devalue people in stigmatizing processes and how essential it is that we don't reinforce those power dynamics in our stigma research processes. The stigma research needs to be to the extent possible community-led in a participatory way. For communities, I think we all know what's happening with HIV stigma is not theoretical, it's real, so putting communities not only at the center, but in the driving seat, really allows the research to meet the needs of communities, but also to be grounded in these realities.
I think it's important to reinforce what has been said, which is that what's happening in a stigmatizing process is not that there's nothing neutral and this is also how I would frame this. Stigma is inherently about power, relationships, and dynamics. It's not just that some people are devalued when stigma happens, other people are pro-valued and then this is why I say there's no neutral ground. You're either giving people extra concern and appreciation or you're diminishing and devaluing them.
One thing that we asked in this article that I would ask here to all of us who conduct research from whatever position we're in is to be reflexive about our position and to think about how that impacts our research and even more to think about that in terms of intersectionality. As I've written in my notes, intersectionality, not just for objects of research, also those who are behind the microscope, we also occupy an intersectional space and have an intersectional identity, and we need to be reflexive about that.
I want to raise a couple of quick challenges at least as I see them. In intersectionality research on stigma, it seems that we're looking at multiple axes of identity by which people are devalued, everything about intersecting stigmas, but I'd say that that isn't quite right because intersectionality isn't, as I said earlier, only about devaluing, but it's also about pro-valuing. I would say that by ignoring what is pro-valued, we continue to normalize the processes that privilege certain characteristics like whiteness, heterosexuality, maleness, economic security, and more, and we miss the full picture of how stigma actually works.
We end up putting people in individual boxes related to HIV of bad-off, worse-off, even worse-off, and way worse-off, and either often the only options for people living with HIV and stigma research. I don't want to say that we should stop focusing on those who are at the receiving end of the most mistreatment because we need to make that step, but we're missing, I would say the full picture of people's resilience, their community membership, their engagement, the kinds of social regard that they may receive in some spaces of their lives. We're only putting people into these boxes, intersectionality is only about the ways in which people are devalued, and I would say for people living with HIV, we become objectified in that kind of a research lens. Quickly, in terms of identity and intersectionality, we all have these multiple identities that we can identify with and some of them are more salient at some times than others and I don't think our research processes around stigma have yet thought through, and tell me if I'm wrong, I hope so, but have yet thought through how to manage this. The salience of different identities changes based on what's happening around us and what we decide is the most important about our identity matters sometimes. Also, how other people around us look at us and see which elements of our identity are most salient, can change depending on outside circumstances. I could say a lot more, but I won't.
I do want to say that characteristics that are devalued can also become a source of strength for some of us, especially when we connect with others in similar situations. I think we have to, in line with this, think about the role of networks of people living with HIV networks, gay men networks, other LGBTQ networks, et cetera, and the role they play in self-empowerment, support, and activism, and resilience.
I'll just say quickly, without more comments, that the research logic and methodology that we have around intersectionality right now traps us. Most of the analysis methods we have are exactly against an understanding of intersectionality and complexity and wholeness. Just let me conclude, after noting these challenges, that I think these challenges will be interesting for all of us to wrestle with. They really reinforce the point I started with, which is that it is essential to have community leadership and engagement in the research project process around stigma research, because it's the communities, at their best, of course, that can hold faith and recognize the multiple identities and challenges related to those identities and privileges related to those identities that we are all managing, and that it is the communities that can best hold faith versus whole human beings with the dignity, that we inhabit, as we think about research and intervention to understand and address HIV-related stigma. Thank you very much for the time and attention and looking forward to whenever we get to talk more about these issues.
Dr. Ayala: Thanks so much, Laurel, and thank you, Justin and Rafaelé. I really appreciate it. I wish we had a little bit more time to do a little bit of a discussion. Each of you has raised some very, very important issues and questions that I hope we'll take forward in the rest of the workshop. So thank you very much. I'll hand it back over to Greg.
Greg: Yes, thanks, everyone. As you can see, we're just about 10 minutes over our time limit. Let's just take a quick five-minute break and be back at the top of the hour. Thanks so much to our community speakers and our conceptual framework speakers and opening speakers, and let's resume at the top of the hour. Thanks so much.
Greg: I appreciate everyone's patience, and hopefully, you're making it back to your computer and had a chance to take a quick break. I'd like to get started with our next session. I'd like to invite all of our measurement presenters to turn on their cameras.
Greg: So, we have Dr. Lisa Bowleg from George Washington University, Seth Kalichman from University of Connecticut, Jonathon Rendina from Hunter College, Mark Hatzenbuehler from Harvard, and Brian Dodge from Indiana University, Bloomington, and then finally, James Hargreaves, London School of Hygiene and Tropical Medicine, Anne Stangl, Hera Solutions, Solutions, and Virginia Bond, London School of Hygiene and Tropical Medicine.
So I'm just going to take the prerogative and say thank you to our measurement folks who helped Lisa Bowleg stay online. The measurement folks can turn off their cameras except Lisa. Lisa, we'll go ahead and get started with your presentation.
Dr. Lisa Bowleg: Thank you. What I'm going to do is talk about our R21 grant in which, what we're trying to do is, develop measures of multilevel intersectional stigma for Black, gay, bisexual, and other men who have sex with men, in Washington, DC, and Jackson, Mississippi. Next slide, please. This is the title of our study, Developing and Validating New Measures of Multilevel Intersectional Stigma. Our focus is on HIV prevention. We want to improve the HIV prevention continuum for this population. Next slide, please. I want to show this slide because I think this signals why it's so important that we get this concept right.
This is an example, this is an article, not based on my research, but based on research that Dr. Katherine Quinn has done on intersectional stigma. What's so wonderful about her work is that she really is applying more of the structural level intersectional stigma approach. The photo to the right is an example of how our research gets the uptake of research. It's very important that we have a strong and firm definition and conceptualization of what we're talking about when we're talking about intersectional stigma, and that is very much informed by community perspectives.
Next slide, please. Our focus of our research is on the South, and specifically, Jackson, Mississippi, and Washington DC. The reason for this [unintelligible 02:02:37] obviously because HIV has been particularly prevalent in the South, and with, not surprisingly, Black populations, and, specific to the intersections that we're interested in, Black men who have sex with men, accounting for the disproportionate burden of HIV in the South. Next slide, please. Here is our investigative team. It includes Dr. Leandro Mena from University of Mississippi Medical Center and Dr. Paul Burns also from Mississippi, that sort of Mississippi group.
In DC, Shawnika Hull, formerly of the GW School of Public Health. She now will be at the Rutgers University of New Jersey. Dr. Tamaar Taggart, the GW School of Public Health, and Dr. Anna Maria Del Rio Gonzalez, also of the Department of Psychology at GW. Next slide, please. Also, our consultant, is with great regret that I mention our consultant, Dr. Ron Simmons, who passed just a few weeks ago, and who was instrumental to the study and also connecting us with people in Jackson, Mississippi. Next slide, please. This is our framework, and we borrow this from Carmen Logie's work.
Basically, what we're trying to do, is have a model of intersectional stigma that really, as I talked about in my earlier talk, encapsulates this notion of intersectional stigma at multiple levels, at the individual level and, or interpersonal level. We were very much interested in what are the barriers to HIV prevention for gay and bisexual men in terms of their interactions with healthcare providers, for example. We wanted to understand community-level stigma. What happens, as an example, religious institutions, social media, how stigma is communicated at the community level, and then also structural.
Very much interested in laws and policies that participants may know of, or not, but nonetheless, all interplay to shape what happens in terms of HIV, access to HIV testing, and also PrEP use. Next slide, please. Here are the specific aims of our study. We wanted to develop quantitative measures starting with qualitative interviews with Black gay, bisexual, and other men who have sex with men in Jackson, Mississippi, and also Washington DC. Then to develop quantitative measures based on these interviews. We also want to develop a spatial visualization.
This is where Tamar Taggart being a member of our team, is just so fantastic because we want to understand where participants go, and where they don't go, in the spaces they occupy, where they live, and what that might tell us about barriers and facilitators to HIV prevention. Then the second thing is to assess. After we've developed these measures, we want to assess the psychometrics of the measures at baseline in six months, and then we want to bring this all together, connect this in our typical mixed methods research approach.
I should say surprise, surprise, our study has been quite interrupted by COVID-19. We're at a pause in terms of recruiting participants for our study. Next slide, please. This is a larger mixed-methods approach that we're using. Basically, as I said, we're going to do. We started off with literature and policy reviews. We wanted to understand what's out there. What are some of the existing intersectional stigma measures, and what are some of the ways that other researchers have measured structural aspects of stigma? For example, Mark Hatzenbuehler's work has been very instrumental to our work in trying to understand what stigma looks like at the policy, and social, and structural level.
Then, to develop these into quantitative measures, we're going to combine these and synthesize the results. Next slide, please. Here's the eligibility criteria you have. Since our focus is HIV prevention, participants have to be HIV negative. We are looking for a self-identified Black gay, bisexual, and other men who have sex with men, between the ages of 15 and 34. Initially, what we proposed to do was to do HIV testing to confirm that they were negative. Now we have to rely on clinician referrals in the last three months, is one of the accommodations we've made because of COVID.
Next slide, please. What I want to do is just talk you through very quickly, what we're hoping to do. We want to understand individual-level stigma that's centered around the participants, and to develop quantitative measures from what we learn in the qualitative interviews. Then we also want to understand indices about stigma, and what that looks like at the community level, and then at the structural level. We hope to develop measures that participants will be able to complete where they will tell us about their interpersonal, their internalized classes, and then racism, and all of that, but also about interpersonal.
We're very much interested in what happens within the interplay between individual participants and healthcare workers, for example. Then we want to know about, at the community level, what that looks like, and so asking people to tell us about, or how heterosexist are their communities, or about what they hear on social media about Black gay, and other men who have sex with men. Then we want to know, for example, do they know criminalization came up in the last panel, for example? Are they aware of different laws criminalizing HIV transmission, to understand how that can factor into intersectional stigma?
Then we realized that there are a variety of things that people won't be able to report on. This is the onus on us to learn how do we measure these different structural manifestations of stigma at the community level? For example, using the general social survey data of community-level heterosexist attitudes. We want to know about anti-LGBT laws, for example, HIV exposure criminalization laws, barriers to PrEP. Then we also want to map this all out. We want to understand what this looks like spatially. What are the neighborhoods? For example, where are the HIV prevention clinics? Where are the places that somebody would go to be tested? Would that be in a neighborhood where Black men would not go, for example, because they know that they're much more likely to be hyper policed or followed, or subject to stop-and-frisk? We really want to get a spatial understanding of stigma. Next slide, please. I just want to show you about what we're thinking about as we think about stigma in the multilevel way far bigger than just what individuals report about their own internalized stigma, or what happens interpersonally. As I'm sure you all know, Mississippi recently voted to take the Confederacy flag off of the state flag. This is likely an example of stigma in the air, community-level stigma about what it means to be Black in a place that is still flying the Confederate flag.
This is something, a contextual factor, that informs our work of stigma just beyond individual-level reports, but community-level stigma. Next slide, please. Also, relevant to our study, or our focus on structure-go back one, please, previous slides, thank you-is this notion of state Medicaid expansion, and its impact on access to PrEP. In DC, there are lots of different opportunities, expansion of Medicaid, and opportunities to get PrEP, versus a place like Mississippi that did not expand Medicaid. So that tells us we save -- that might give us much more information about barriers to access to PrEP.
Something at the structural level, something at the policy level, rather than so individual -- whether you've internalized stigma as a Black gay and bisexual man. Really trying to understand the structural factors that inform decisions people make around HIV prevention. Next slide, please. Similarly, HIV criminal laws, whether people know about them or not, and, of course, we know that anytime we're talking criminalization and Black people, that Black people are disproportionately likely, Black and Latinx people, to face a harsher burden of any type of criminalization.
Again, this is understanding structure or stigma through this lens. Next slide, please. This year is just another example of what we're talking about when we're trying to understand stigma in a multilevel way. This is a human rights campaign fund. They give these state equality indexes. You can see that this is in 2019, DC got high marks across all sorts of different laws, whether it's youth laws, or parental laws, or marriage equality. Marriage equality is federal, but basically, the point that there are so many more protections. One could hypothesize that stigma, at least at the structural level, would be experienced in a very different way for Black gay, bisexual, and other men who have sex with men, in DC, compared with Jackson, Mississippi.
Next slide, please. This is my final slide where you can see that Mississippi has not fared as well in terms of protections or equality for LGBT people. Our project is really, really targeted to getting the comprehensive look at how stigma at the individual level, and the community level, and also at the structural level, how these all interlock, and what this tells us about HIV prevention, and also HIV prevention, what are the barriers, and also what are the facilitators. I'll end there. Thank you.
Stef Baral: Thank you very much for that, Dr. Bowleg. I'll take it over from Greg now. I see a really great question from Dr. [unintelligible 02:06:01]. I'm wondering if folks have any clarifying questions. Otherwise, there'll be a discussion immediately afterwards for about 15 minutes. I think that the question there about teasing out structural elements versus individual perceptions and lived experiences is going to be a critical part of that discussion. If not, I'm going to thank Dr. Bowleg, and we're going to move on to Dr. Kalichman. I think many of us know Dr. Kalichman, that he received his PhD in clinical-community psychology from the University of South Carolina. He's a professor in the Department of Psychological Sciences at the University of Connecticut, and director of the Southeast HIV/AIDS Research and Evaluation Project, the SHARE Project, and also the editor of AIDS and Behavior, and many other attributes. We're really looking forward to his presentation on individual level elements around intersectionality, as it relates to HIV. Thanks very much.
Dr. Kalichman: Thank you, Stef. I want to briefly talk to you today about a scale development project that we're doing as a part of this initiative. I have several slides I want to just go through quickly to show you our approach to trying to measure intersectional stigma at the individual level. Next slide. We're really working from the pretty well-accepted approach to defining intersectional stigma conceptually, that we've heard much about today. I think what is inspiring our work most is the idea that intersectional stigma is a unique entity in and of itself, that it is not just the sum of multiple stigmatized identities, that it is they come together to form a unique experience.
Next slide. Intersectional stigma in HIV has been conceptualized in a few different ways. What we've been interested in is the intersection between stigmatized identities around race, around sexual orientation, sexual behavior, and the ascription to HIV as the disease itself. There's a long history in this literature, of looking at HIV as a layered, or now, really intersectional entity, in that, it's hard to disentangle HIV stigma as a disease. The contagion aspect of HIV, the [inaudible 02:08:48] HIV from the other stigmatized identities that are often correlated with it. We're really trying to do is do that deconstruction.
Next slide. Measures of intersectional stigma in the literature have varied. Sometimes what people will do is, they'll ask questions in parallel. They'll ask about stigma, and stigma experiences, that can be ascribed to a particular aspect of an individual's identity, their race, or their sexual orientation. Then they'll have these separate measures, and try, somehow, to combine them using multiple items that are difficult to bring together and create a composite, you'd say, of intersectionality. Next slide. Another approach has been, you ask very specific items that are highly specified to stigmatized identities, like an individual's experience of stigma, as they ascribe it to their race or their sexual orientation, they're living with HIV, and have the person conceptualize themselves that way.
The downside of that is they can't be disentangled. We really can't look at the sub-components of those stigmatizations. Next slide. We wanted to do was we wanted to do work from the HIV stigma framework, really, Valerie Earnshaw's approach, and in terms of conceptualizing HIV stigma. We wanted to create a new approach to assessing intersectional stigma to establish the scale reliability and validity across a couple of studies. Next slide. We embarked on really multiple steps to doing those two. We had to generate and identify items. The way that we did that was we looked towards the literature; both qualitative and quantitative studies of a variety of different stigmas that are relevant to multiple health conditions.
Then we went through a process of selecting items, and the large pool, and then reducing that item pool. Then we conducted a few pilot studies to look at different response set properties. All of this work has been with Black men who have sex with men and trying to figure out the intersectionality of race and sexual orientation, and then also samples of people living with HIV to include HIV stigma. Then our final step is to look at these psychometric properties of this new approach. Next slide. Our item selection process led us to these sub-components of enacted stigma, so we're looking first at enacted stigma. What we've done is we've identified composites that can be grouped into pretty well-recognized sub-components of stigma, enacted stigma, the felt experience of stigma, interpersonal stigma that happens in relationships and exchange, discrimination, experiences, and the stigma experiences specific to social media. On this slide, you see a few sample items. You see that we have 8 items in the felt, and 10 items in the interpersonal, 8 in the discrimination, and 10 in the social media sub-component.
They're mean scores on a scale that goes from not experiencing at all, never, to three, often experiencing, and the alpha coefficient for those sub-component subscales of enacted stigma. Next slide. This is what the measure looks like on phones that we deliver the assessment to, to our participants. This is all done in Redcap using programming that allows us to have skip patterns so that if someone doesn't experience the stigma, they go on to the next item. What our approach is, is we're asking participants to first tell us if they've had this experience of stigma.
Then if they say that they have had it, whether rarely, or occasionally, or often, they'll be asked additional questions of these 36-stigma experience enacted items. Next slide. If they say that they occasionally experienced this particular stigmatized experience, "I have been treated unfairly in stores or restaurants," they'll be asked the next set of questions. Next slide. They'll be asked if they have had this experience, how upsetting it was to them to get a stress-related marker for it. We use a slider bar that they can go from 0 to 100. All these slide bar responses, now, for these next items, relevant to that stigma experience, are on a 0 to 100 scale.
We are asking them how upsetting the experience was to them. Next item. Next slide, rather. We're asking them to tell us what they believe is at the root of that experience. If they believe that that experience was primarily because they are Black, African American, because they are a man who has had sex with men, in this study, what we've done is we've included the combined stigmatized identity of Black, African American, and because of a man who has sex with men. This was the traditional way of thinking about the combined stigmatized identity.
Then we ask them if there are other reasons other than their race, and their sexual orientation, or that unique combined experience, that they would say is the reason why they've been stigmatized with that specific item. Next slide. Each of these responses then is on this 0 to 100 scale. I've demonstrated here as 0 to 10 for the sake of simplicity, the rest of the slide. We end up with these individual dimensions then. Next slide. For any given response, we're going to get an individual score. In this study, what we're looking at is, in addition, we've got that combined, because of my race and my sexual orientation response. To be clear, everybody is asked all of these attribution slide bars for every item that they endorse having experienced, of the 36 enacted stigma experiences.
Next slide. This is what the distribution looks like for that combined item. You can see that it doesn't have great scale properties, but that is what it looks like. That's the frequency distribution for men saying that they've had that experience of being discriminated against in stores and restaurants, because of their race and their sexual orientation. Next slide. We can do a few things already, with this. We can compare. Because we've got the deconstructed responses, we can compare men's attributions for their stigma experiences on our four scales, whether or not they attribute more of this to their race or their sexual orientation.
What we're seeing here is a general trend towards describing their stigmatized experiences more to their race and their sexual orientation. Next slide. When we compare their attribution to their race, to their attribution to their combined race and sexual orientation, we see the same pattern, which doesn't really bode well for the combined item, because it looks a lot like sexual orientation. Next slide. When we look at the sexual orientation relevant to the combined item. That's one thing we can do with the unit dimensions, but this is not really what we're after. Next slide.
This is what we're after. We're thinking that what we can do with these individual responses is consider them, to conceptualize them as orthogonal unidimensions of an identity. If we conceptualize these as unidimensional orthogonal dimensions, we can look at the intersection of them. This is really what we're interested in doing, is trying to have a metric for intersectionality. Next slide. We can use, actually, geometry to calculate the intersectional score based on the scores that participants have for their race and their sexual orientation stigma responses to create a new composite.
Next slide. It's just a simple geometry to be able to calculate from, in this case, a score of 7 on race, and a score 3 on sexual orientation, an intersectional sigma score of 7.6.
Next slide. Next slide. Next slide because those slides were actually out of order. [chuckles] This is the distribution, then for that new geometrically scale composite for the discrimination items. What we did was we took the Pythagorean theorem, we took that formula for calculating intersectional score and applied it to each of the eight items in the discrimination subscale, and then took the meaning of that, and that's what you're looking at here.
I think you can see that its distributional properties look nicer statistically than that combined item, which was quite bimodal. Next slide. When we look at the correlation between our geometric score, and the combined item for the discrimination scale, we're seeing correlations that are not one, which is really good, and they're not low, which is really good. We're seeing them between seven and nine, and so we're encouraged by that. Next slide. We're using the same approach for anticipated stigma. We've had a difficult time conceptualizing how to do this with internalized stigma, but I think we figured it out.
More to come on that later. Next slide. In conclusion, I think we've developed a novel and a parsimonious approach to assessing intersectional stigma that can be applied across multiple stigmatized conditions, and multiple stigmatized identities. What I like about this approach is that using a single pool of items, we can look at multiple different anythings. We can look at-- You could change HIV to diabetes, you could change race to social class. The amount of data that we get from the scale is actually a bit mind-boggling because from three items with people living with HIV, race, sexual orientation, and HIV, we can get intersectional stigma scores for race and HIV, sexual orientation and HIV, and sexual orientation and race.
We can get the three because the Pythagorean theorem goes into three dimensions, we can get a intersectional stigma score for what it is like for my attributions, for the stigma experiences to my race, my sexual orientation, and my HIV status, as one entity. That's the project that we're doing. We're about done with Study 1, which is our psychometric study. Right now, I can tell you that the scales look reliable, and we're getting some pretty good evidence that they've got some signals for validity. Next will be our second validation study. I think that's the last slide.
Stef Baral: Thank you for that. That was a really interesting presentation that I look forward to studying in more detail. Super interesting. I'm seeing really rich questions from Antigone Dempsey from HRSA, and from Deep Rao. These all seem very more discussion oriented. With that in mind, as was suggested by [unintelligible 02:30:31], I'll read those out as we get into the full discussion period, but for now, for the sake of time, I'm going to move on to introduce Dr. Jonathon Rendina, who is an assistant professor of psychology at Hunter College in the Graduate Center of the City University of New York. He received his MPH in biostatistics from Hunter's College and in 2013, and PhD from CUNY Graduate Center in 2014.
I think the key things has been recipient of many awards, both from the NIH, but also importantly, the recipient of the 2018 Psychology and AIDS Emerging Leader Award by the American Psychological Association and has really been mentoring and training the next generation. I'm really excited to hear him now move from first hearing about multilevel intersectional stigma, then to individual level, and now Dr. Rendina talking about event-level. Thanks very much.
Dr. Jonathon Rendina: Thanks, Stef, and thanks to everyone who organized this conference. It's a real honor to be presenting here alongside all of these amazing speakers today. What I'm going to be talking about today, I'm not going to focus specifically on my prism study, but I will talk a little bit about that. The notion of capturing stigma from an event-level perspective, is a little bit more controversial, maybe not controversial, but it's more novel, and people don't do it quite as often. I'm going to take a little bit more of a zoomed-out perspective here today.
I'm going to talk a little bit about when to consider event-level data when doing intersectional stigma research, a tiny bit about prior work, validating the event-level approach for stigma. I will then touch on our current prism study on event-level measurement of intersectional stigma for diverse sexual minority men. Then we're going to end with key considerations for ongoing work that I hope will help to inform the ongoing working groups that we'll be all broken into after this. Just to start out with what is event-level measurement of intersectional stigma.
Event-level measurement typically uses frequent or intensive sampling over time. This can be daily diary research, ecological momentary assessment research, sometimes also called ambulatory assessment research. For the purpose of today, I'm not going to differentiate between any of these different types of methods, but all of these would characterize the types of repeated intensive measurement that we think of when we think about event-level of measurement. The goal here is to capture an experience repeatedly over time. Typically, as close as possible to as it's being experienced.
This has several benefits. It can reduce recall bias that is present when we do retrospective measurement. It allows you to capture within-person variation in state like measures. Anything that you think changes within a person over time and context, this is a great method for capturing those, and looking at those changes over time, and context. It allows you to look at micro longitudinal effects, where your outcome of interest, and at least one of your predictors of interest, are event-level and differ within people. Micro longitudinal, meaning that we're not looking at a person over a year, every 3 months, and how something at baseline might influence them at 6 months and 12 months.
Rather we're looking at how something, either in the early part of one day, influences them later in that day, or how the effects of something happening on one day might influence them the next day. There are many reasons to consider event-level measurement, but there are also plenty of circumstances where event-level measurement is actually not ideal. Event-level measurement is really well-suited if your outcome of interest changes across events. This is particularly true for behaviors which are discrete and occur in momentary experiences.
For state-level cognitive and aspect of variables, as well as for biological and physiological markers, that fluctuate within the context of a day, or across a few days. This can be things like heart rate, blood pressure, cortisol, any of these factors that we can actually capture micro longitudinal variability in. You should have at least one predictor that changes across events. You would expect within-person variability, in at least one of your predictors and not just in your outcome. It's great if you're expecting complex associations in a micro longitudinal fashion. Event-level of measurement is wonderful for if you are expecting any kind of reciprocal effects, if you expect to see spillover effects.
The way that I feel on one day is going to influence the way that I feel the next day, and it's going to spill over, over time, or if you're interested in incorporating any of the above plus individual level, or other higher-level predictors. The thing that I love most about event-level data is that you can't analyze it, that level of data as single level. We always are going to be analyzing event-level data within the context of a multilevel model. These types of event-level data around intersectional stigma are particularly excellent for intersectional stigma because of its multilevel nature.
We can take into account both individual-level factors within these multilevel models, as well as structural and societal level factors within these multilevel models depending on the number of people that we have and having sufficient variability at higher levels of analysis. These event-level models are not well suited if your outcome of interest is at a higher level of measurement. If you're looking at an individual level outcome, then event-level measurement of stigma is not going to be super helpful because you're then going to have to aggregate those data up to another level of analysis to look at them.
That kind of leads right into the next point, which is, if you intend to aggregate the event-level data such as creating counts or averages over time, it may not be worth the extra effort of capturing event-level data. Event-level of measurement is complex, and it is also frustrating for the participants. It is important to keep in mind that there is always a cost, and a benefit, and you should not just default to event-level of measurement unless it's actually going to have a strong benefit that outweighs the costs, both methodologically, and to the participants.
It's also not super well-suited if you're doing something like capturing rare occurrences, or really extreme types of events where even if you're measuring someone for a full month, you may never see that event occur in most people. That would not be a great use of event-level models. I just want to stop there quickly and answer the question of why we would ever want event-level models when stigma is inherently social and structural. I think I agree completely with people like Lisa Bowleg, who is brilliant and rightly points our attention back to the structural level.
I think the amazing thing about capturing event-level data in addition to those structural level data, is that you're able to view stigma as a process. You're able to actually think about stigma as an outcome and an outcome that actually isn't between people, but within people. You can look at each person, and how their experiences change across context and across time, and how they respond to those different experiences. In that way, stigma becomes not just something you measure as a self-report, for example, but it can also actually become a process that you can study as an association.
I'll talk a little bit more about that at the end of this, but that is one of the most exciting things that I think make event-level data a really interesting technique for intersectional stigma. I'm going to dive in now just to two quick studies that show some of the difficulties with capturing intersectional, or stigma in general, on an event-level basis, but also some of the benefits. I'm starting right now with one study which we had 371 diverse, highly sexually active men, who were sexual minorities living in New York City. We did 30 once-daily diaries that include daily affect, and two items, which we were piloting at the time, capturing daily experiences of sexual minority stress.
Let me see if the little-- Yes, the little box is now coming up, which will draw your attention right to the point of this, which is the event-level, or daily measure, of gay-related sexual minority stress. What you can see here is that when we were looking at the association with day level positive affect, day level negative affect, and day level anxious affect, we found a highly significant positive impact on negative impact and access impact. Negative affect and anxious affect, and a negative association with positive affect. If you look down to the between-person level, you can see that we were able to dis-aggregate this event-level daily stigma measurement into within and between-person effects.
We did also, in the same model, observe similar effects at the between-person level. This shows that really, we were seeing stigma operating at both levels. We were seeing between-person differences in stigma, and in this case, specifically only about sexual minority identity, but we were also seeing these things change over context, and across the course of different days within-person. The same thing here is being shown now focused on the daily experience of HIV stigma. This is from a pilot study funded with a K01 from NIDA. Thank you to NIDA for that. This is a sample of just 50 sexual minority men living with HIV in New York City. One of the nice things about event-level data is also that you capture so much data that you actually have pretty high power, even with sample sizes like this at only 50. In this study, we actually did twice daily, 21-day, capturing of data. This was an ecological momentary assessment study. Diving in, again, here we actually tried to disentangle the experience of anticipated HIV stigma from internalized HIV stigma at both the within-person, and the between-person level.
What we found actually that was interesting in this particular study, was that internalized HIV stigma had significant effects at the within person-level across all of the effect of outcomes that we captured except for fatigue. Anxious affect, depressed affect, anger, and emotion dysregulation. We actually didn't necessarily see all of these effects come out at the between-person level. We actually saw more within-person effects than we saw between-person effects, suggesting that a good deal of the variability that's actually impacting daily experiences of affect are occurring due to changes within people over the course of context and time.
However, both of these studies had their difficulties. I will say that one of the biggest difficulties is that for this study, in particular, the ICC, the within-person variability in HIV stigma across days, the ICC was high. The within-person variability was low. We had an ICC of about 0.8, meaning about 80% of the variability was actually due to between-person differences, and only about 20% are within-person differences. This highlights one of the biggest challenges with capturing any type of stigma at the event-level. We then went on to design this prism study to address two of the big challenges that we have.
One is that we don't have measures that are specifically designed for capturing event-level experiences. We don't see a lot of within-person variability within the studies that have been conducted so far. Also, that we just don't have measures of intersectional stigma particularly within event-level research, more generally. I'm glad that I'm going after Lisa Bowleg. We actually designed relatively similar studies to address opposite ends of the spectrum when you think about the multilevel experiences of stigma. Ours was a three-phase study that started with systematic literature reviews and qualitative interviews followed by multiple iterations of cognitive interviewing with the population of interests and ending with what will be a daily diary, quantitative validation study.
This is a study that is looking at the experiences of intersectional stigma among Black, Latino, and White sexual minority men. We're recruiting all of these men from an existing cohort study that we have of HIV negative men across the United States. The aims were to generate and iteratively enhance a pool of items using the available literature, expert input, and feedback from young sexual minority men. I'm sorry, this is also among young Black and White sexual minority men, so 18 to 29. The items are designed to be culturally congruent, well understood, use appropriate response options for daily measurement, and represent the range of relevant experiences for YSMM in daily life, and then to test the psychometric properties and validate these items for future use.
I'm going to focus in on the qualitative interview phase that we started this study with, and [crosstalk]
Stef Baral: [crosstalk] Jonathon, can you try wrap up in the next minute or two? Sorry, thanks.
Dr. Rendina: Yes, this is one of my last slides. Focusing in on the qualitative interviews, we identified some major themes. One of those themes has been well discussed today. Intersectional identities are inextricable, and in some cases, for some people, stigma experiences may be attributed to a specific identity, but this is overly simplistic. Intersectional identities provide opportunities for resilience and resistance. We need to be capturing the positive experiences as well. Identity salience is context-dependent, but also space and place are critical.
We need to be capturing how people are interacting with the spaces that they're in on a daily basis, and that we need to focus on process and not content. Going back to what I said on the beginning, intersectional stigma, in particular, should take into account, not how stigma looks, but also how it becomes a part of a person's daily narrative. This is my final slide. Key considerations for future intersectional stigma research that using event-level measurement. Avoid focusing on extreme experiences. You don't see them often in that type of measurement.
Avoid trying to tease apart identities or isolating one driving factor. People don't see themselves in that way. They view themselves as a whole. Quantifying stigma should go beyond tallying up frequency, and the range of experiences. We should add a focus onto both positive and negative responses to stigma, consider not just social interactions, but also relations to space in place. A general sense of safety and belonging within spaces is an experience of privilege that not everybody has. Considering indirect capture of intersectional stigma by looking at the associations among variables, and not necessarily the variables themselves.
I have to say thank you to a ton of amazing people. My study team, Dr. Ali Talan, Dr. Devin English, Ore Carly, and the entire PRISM study team, with special thanks to our consultants, Dr. Viraj Patel, and Lisa Bowleg, and Greg Greenwood for organizing this and helping to fund this initiative.
Stef Baral: That was a really powerful discussion. I feel terrible hurrying you along. It is incredibly rich. I'm going to, in the spirit of time, there's a lot of really great questions that have been posed. I want to try to make time for that. I'm just going to move right to Dr. Hatzenbuehler's presentation. To introduce both Dr. Hatzenbuehler, who is the associate professor of social science and department psychology at Harvard and was previously at Columbia where he was a Robert Wood Johnson Foundation Health and Society scholar. I will also introduce Dr. Brian Dodge who will join us for the Q&A, and is co-presenting with Dr. Hatzenbuehler, who's a Professor in the Department of Applied Health Science at the Center for Sexual Health Promotion Indiana University School of Public Health in Bloomington and has co-authored a tremendous number of publications.
Dr. Hatzenbuehler: Thanks, Dr. Greenwood, and other organizers for inviting me to be a part of this great conversation. I'm going to briefly present some work that my colleagues, and collaborators, and I have been doing in the area of structural stigma and talk about how that can be applied to research on intersectionality. It has been mentioned several times today. Stigma has been conceptualized in the literature as a multilevel construct, ranging from individual to structural levels. Really briefly-I think it's going up in the wrong way-individual forms of stigma refer to the psychological processes through which stigmatized individuals both perceive and react to stigma.
There are numerous individual psychological processes that have been identified, that have already been mentioned today, things like self-stigma and concealment. In contrast, interpersonal forms of stigma refer to interactional processes that occur between the stigmatized and the nonstigmatized. These can include really overt events like bias-based hate crimes, as well as more subtle interactional processes, like microaggressions. The vast majority of research on stigma has really existed at these two levels of analysis. That work has been really important because it's documented many of the ways in which stigma operates to produce disadvantage.
At the same time, this work has been criticized for overlooking broader structural forms of stigma, which my colleagues and I defined as societal level conditions, cultural norms, and institutional policies and practices that constrain the life of the stigmatized. This lack of research on structural stigma relative to stigma, at other levels of analysis has been called by my colleague, Bruce Link, a dramatic shortcoming in the literature on stigma, if the processes involved are likely major contributors to any core outcomes. One of the reasons for this lack of research on structural stigma is that, until recently, the field simply hadn't been measuring it. This is demonstrated in the paper that Bruce Link and his colleagues did that reviewed measures of mental illness stigma.
It found that only two studies, less than 2%, had actually measured on structural forms of stigma. While that paper was focused specifically on mental illness stigma, the same can really be said for research on other stigmatized statuses and characteristics. Given this lack of structural stigma measures, the field really had to go about developing measures that could reliably capture this construct. There are a couple of different measures that researchers have begun to use. I'm going to briefly mention three that have received the most attention.
I'll talk briefly about some of the advantages and disadvantages of each type, and then provide just one illustrative example of how research has used these different approaches to study how structural stigma influences HIV outcomes given the focus of the conference today.
The first measurement approach is social policies that promulgate stigma. Researchers had two different approaches here. One is to examine single policies, and the other is to examine composite measures of multiple different policies. One advantage of this measurement approach is that they rely on objective data sources to code the social policies, providing clear evidence of structural stigma but they also have limitations.
This includes the fact that policies may not always capture the unwritten customs and procedures, they undergird more informal practices that can constitute structural stigma. In addition, sometimes these policies lack variation, and so represent a ubiquitous exposure. Without variation, there's, of course, no statistical power to detect an effect, even if we think that these forms of structural stigma may be relevant for health. I'll just really briefly mention an example of this approach from a paper that my colleagues and I recently published. Here, in this example, we combined 11 different state-level policies related to sexual orientation over a 15-year period and derived 3 different latent groups that we defined based on growth mixture modeling. As you can see here, on the left-hand side, states fell out into three different categories. One was those that consistently had low policy support for sexual minorities, shown in green here, and states with consistently high policy support for sexual minorities, shown in blue.
Finally states with increasing trajectories of policy support for sexual minorities shown in red. The figure on the right shows a map of the US states groups by these three different policy classes. We then linked this policy data to anonymize longitudinal HIV/AIDS surveillance data from the CDC, which was aggregated to the MSA level. Here are the results for our study, the outcomes are shown here on the top. You can see here that we found a dose-response relationship between the state policy classes, and each of the four HIV outcomes, such that the lowest risk of HIV outcomes were found in MSAs in states that had the highest level of policy support for sexual minorities.
In addition, we used population attributable factions, and we found that about a quarter of HIV diagnoses, about 21% of late diagnoses, and about 10% of AIDS-related deaths among MSMs, were attributable to the state policy climate. The second measurement approach had moved from policy to consider aggregated social norms. These represent an important indicator of structural stigma because social attitudes not only reflect, but also shape many of the other components of structural stigmas such as policy regimes that we just talked about.
In this approach, researchers aggregate individual responses of people's attitudes up to the community level, which is defined at various geographic scales such as US counties. This enables researchers to compare the level of structural stigma across these different geographic scales. There are two types of these attitudinal measures, one is self-reported, and the other is non-self-reported. One of the major advantages of these explicit measures is that they avoid the same source bias. That's because the exposure and the outcome are measured via two different data sources. These also have limitations, and one of them, of course, is social desirability bias.
People are less likely to report negative attitudes for socially sensitive topics like stereotyping and prejudice, which can potentially underestimate the level of structural stigma when using these measurement approaches. Given that limitation, researchers have started to develop new measurement approaches that don't rely on these explicit self-reported attitudes. These include the use of implicit measures like IAT scores, or behavioral measures like Google searches, which were then aggregated to community level. They have the main advantage of overcoming some of the social desirability biases that are present with explicit measures.
There are also limitations to these measures as well, including some questions that researchers have raised regarding some of the psychometric properties of these measures, including their construct validity. Let me just present, briefly, one example of a study that used this explicit measure approach of aggregated community norms. This is a great study by Alicia Reeds and her colleagues. In this study, what they did is they re-analyzed a meta-analysis of individual-level psychological interventions to reduce HIV risk behaviors among African Americans.
They capitalize on the fact that these interventions had been done across the US, in communities that differed in terms of level of structural stigma related to race, which they measure by aggregating Whites' explicit attitudes towards Blacks in the communities where these interventions were done. I shared the results. Here, on the y-axis, are the mean effect sizes for these HIV interventions. On the x-axis are Whites' attitudes towards African Americans in those communities where the interventions were done. This is the feeling thermometer, so it's reverse coded.
Higher scores indicate lower prejudice. You can see here on the right-hand side, in the lowest prejudice communities, the effect sizes are really robust, and in fact, persisted over time. In contrast, on the left-hand side here, in the highest prejudiced communities, you can see that these interventions were completely ineffective in the highest prejudiced communities. These findings suggest that structural stigma related to race may undermine the efficacy of individual-level HIV interventions among African Americans. So far, I've discussed measures of individual indicators of structural stigma, either in the form of social policies, or aggregated community norms.
The third measurement approach has been the use of composite measures of structural stigma. This approach here, as the name suggests, is to combine multiple different measures of structural stigma, such as law of policies, and personal attitudes. There are a couple of different reasons for the use of these composite measures. The first is that different dimensions of structural stigma are highly correlated, suggesting that they may tap into a latent construct of structural stigma. Secondly, by combining these indicators, it may improve construct validity because they acknowledge that there are many different components of structural stigma.
Then third, composite measures tap into shared variance, and as a consequence, minimize unique variance that is, unmeasured variables that may reflect other constructs. In turn, I can reduce our measurement here. Despite the many advantages of these composites measures, there are, of course, not appropriate for every research question. In particular, they may not be appropriate for research questions that seek to evaluate which individual component of structural stigma is most robustly related to health, which, of course, can have important policy, and intervention implications.
There's sometimes a tension between the use of composite measures, which have these methodological advantages for a search, yet may be less relevant for intervention than policies. Let me end by briefly mentioning what I think are some of the implications of structural stigma theory and evidence for research on intersectionality. I think that we need to do a better job of integrating this work on structural stigma with intersectional frameworks. Let me say just a little bit about what I mean by that. As has already been mentioned, most quantitative research currently tests intersectional hypotheses by examining interactions between demographic characteristics like race, sex, sexual orientation, SES, and so on. The intersectionality theory and frameworks are really about multiple intersecting systems of social oppression.
We should be testing those frameworks by actually measuring those systems of social oppression and examining their interaction. Structural stigma provides one way to potentially do that. In just one example of this approach, John Pachankis and his colleagues created measures of structural stigma related to sexual orientation and to immigration status using composite measures of structural stigma, like the ones that I mentioned on the previous slide, and they did examine interactions between these [crosstalk].
Stef Baral: Mark if you can try to wrap up in [crosstalk].
Dr. Hatzenbuehler: Yes, I just have one more slide after this. They looked at interactions between the two forms of structural stigma and showed that they predicted HIV risk outcomes among immigrant MSMs. This provides one potential framework for how researchers can go about doing this work. To conclude, the good news is that researchers have triangulated evidence for the negative health consequences of structural stigma across multiple measures, methods, outcomes of stigmatized groups. This work has yet to be really fully integrated with research on intersectionality, despite the clear relevance of the structural approach to intersectional frameworks.
I think in order to move this field forward, we need to address some of the challenges to conducting this work. That includes two things. The first is obtaining necessary data across the multiple different components of structural stigma over time, and at the appropriate geographic level that correspond with health datasets. Then secondly, the corollary of that is that we have to address the lack of data structures that have geographic identifiers. Most of this in data sets, either don't make geographic identifiers available, or they place significant restrictions on how the data can be used, which is a significant methodological hurdle to doing this work. I'll end there.
Sorry for going just a little bit over.
Stef Baral: Thank you so much, and we'll get to Dr. Dodge during the Q&A. I can't do justice to Drs. Hargreaves, Stangl, and Bond, and then say that they are leaders in the field, and will be speaking to us about HP 10071, Dr. Hargreaves has committed to 10 minutes, so we can have 10 minutes for Q&A. Thanks very much.
Dr. James Hargreaves: Can you hear me okay?
Stef Baral: Yes, perfectly, thanks.
Dr. Hargreaves: Thanks very much, Stef. I'm going to talk about the HPTN 071 PopART, and theory study. I need to quickly acknowledge NIAID who sponsored the study, and particularly, NIMH, who funded the stigma work within this study, which is a completed study, and not one entirely about infection or stigma. This slide represents the people who conducted the popART trial, and always important to give thanks to the many research participants who took part in this study, nearly a million people were involved in the community. PopART was a cluster-randomized trial, by some measures, one of the largest HIV prevention trials ever undertaken. It happened in
South Africa and in Zambia and it enrolled 21 communities and reported in the New England Journal of Medicine last year. I'm not going to talk about the results. Central to PopART was an intervention based on community HIV care providers delivering door to door annual HIV testing and a range of other referral services. The trial measured HIV incidents amongst a very large cohort of over 40,000 HIV negative adults in the 21 communities and viral suppression amongst people living with HIV.
What Greg asked me to talk about was three things. How our team developed the stigma measures that we used within this work, a quick overview of the actual measures, and then to say something about running a study like this within the context of a very large cluster randomized trial. This slide are some of the key principles that we use when we develop the measures that we used in PopART.
The first one which I'm going to talk about, few people mention this idea, but I think we really went to town with this notion of a parallel approach. By that, we meant two things. We asked different groups of people about their perspectives on aspects of stigma using similar wording and among health workers, who we had additional resources from MIMH to do a more detailed study, we asked them about different groups using the same wording. I'll give you examples of both of those things in a minute.
Where possible we wanted to build on existing items. We did a desk review of some of your planning for your upcoming studies. We had to bounce the breadth of things that we wanted to cover, including drivers and manifestations across these multiple domains of stigma and depth. You'll see in a little bit about how we try to do that. We have very clear hypotheses that we wanted to get at and so our approach to grouping items was driven to a great extent by theory, as well as, obviously, data-driven approaches. We had a mixed-method study and we, in particular, wanted to leverage the power of the trial through that.
All idea was around trying to collect data from each of these different groups mentioned here from or about, and particularly, about the interpersonal stigma that you've heard about already. We collect data from the community, from people living with HIV, health workers, and from key populations. You can see on the right-hand side of the slide, some of the domains we were interested in.
We, for example, collect data from community members on their fear and judgment towards people living with HIV, from health workers about their perceptions of levels of stigma in communities and in health settings, levels of anticipation of stigma amongst various groups to do with both accessing services and stigmatization because of identities, and then, of course, in particular, experienced stigma reported by people living with HIV, as well as internalized stigma.
That was our overarching approach. Let me share with you just a feel for some of the measures amongst people living with HIV. Here's a selection of- we had a very large sample, about 4,000 people who we followed over four years. This is example of some of the questions we asked about experienced stigma in healthcare settings. You can see that phrase about being talked badly about because of my HIV status. That idea, that phrase, also, appears in the questions that we asked to be around 4,000 people who are not living with HIV, who we interviewed in communities over these three to four years.
You'll see on this slide, also, examples of the sorts of things that people were asked about whether they'd been verbally insulted, physically assaulted, et cetera. Then you can't see this slide because it's very small. At least you've got the same screen as me but what this shows is that the domains that we captured were internalized stigma at the top, experience of stigma in the community, in the middle, and then experience of stigma in the healthcare setting. This is all data collected from people living with HIV.
To go alongside that, we talked to these members of the community, then we asked about their perceptions of levels of stigma in the community, including these same memes such as talking badly about and verbally insulting. We asked them also about their own levels of fear and judgment towards people living with HIV. Their perceptions of level of stigma in the community and in healthcare settings.
Then finally, we had an opportunity to ask many questions of health workers and here, again, you can see this idea of parallel measures coming across again. Here we asked about their perceptions of co-workers' behavior including these same memes across these questions and amongst this group, again, we have this idea of collecting data on fear and judgment, perceptions of stigma in the community, and in the health setting, this idea of parallel run throughout this opportunity to collect data from all of these groups.
The final way in which we did parallel measurement was, as I mentioned, we asked health workers using one of the other memes which has to do with shame, we asked them about feelings of shame but not only about people living with HIV who might be with their services but other stigmatized groups in their communities. From this, you could get a sense of the same concept running across opinions about different groups from the perspective of health workers.
Let me end with the third thing that Greg asked me to talk about which was about integrating our work within the PopART trial. This was a formal ancillary study and working group within this, as I say, enormous cluster randomized trial. Much of our job was to make visible and to continually shout about the importance of stigma and other social determinants of health within the context of a trial like this. We have some additional funds, as I said, from NIMH.
The work was a very mixed method. There was a social science group nested within the main trial led by Jenny who you'll meet in a second, and we worked very closely with them. I was trying to think of two key things that served us well in having our voices heard in this very large research community. I think the two I landed on, one was that we had three very clear, simple hypotheses which we put up every opportunity that we spoke to this very large and multidisciplinary group and I'll show you those in a second. Secondly, that we threw out everything that we did. We used the mixed-method approach and triangulate it across from quantitative to qualitative data and that strengthened our arguments within the trial.
Here are all those three hypotheses that I put up every six months in front of this large group of people all of the time. One hypothesis was the implementation of the PopART universal testing and treatment intervention would change levels of stigma, the second was that HIV stigma would undermine the effectiveness of this approach, and the third was that over the course of the trial that UTT was delivered, the forms that HIV stigma would take may change. As I say, these three hypotheses or questions guided us and, I say, served us very well in communicating with our colleagues.
The final thing is about triangulation. These are some of our findings. I haven't really got any time to talk to you about findings but one of the things that we discovered in the course of this data were very slow, but significant over time, declines in HIV stigma. This is our measure of any stigma reported by people living with HIV and we were able to set that. Some of the narratives we got from people talking in communities, and here you can see two opposing narratives, the first is about the normalization of HIV testing. It's a very mundane quote talking about how somebody came to their house and they explained they were going to test people and they asked if they could test me and they could.
That's juxtaposed with this opposing force, still towards the end of the trial, "Oh, jeez, I told myself if I must have it, then I'll throw myself under a train. I won't be able to live with such an element." This quote speaks to the continued pressure felt by people living with HIV around stigma. It was this combination of forces working in different directions which I think triangulate well with our finding of the slow decline over the course of the trial in levels of stigma.
Stef, I think I got close at least to the 9 or 10 minutes. Thanks very much for listening and I'm happy to answer any questions.
Stef Baral That was great. I'm going to ask everybody to put their cameras back on for the Q&A and I'm going to start with Dr. Dodge to share some perspectives really about structural stigma within and amongst sexual and gender minorities and the results of the work you’ve done with Dr. Hatzenbueler.
Dr. Dodge: Sure Stefan. Thanks so much and I'll try to keep this free. As you know this is focused on HIV, but it intersects undoubtedly with sexual and gender minority communities and after Mark Stellar summary of the concept of structural stigma in terms of sexual orientation, in particular, I don't think we're quite there yet with gender identity. many of the measures have been based on aspects like same-sex relationships or marriage equality. But there haven't been any that have been specific to bisexual, queer, and other non-monosexual communities or to transgender communities which overlaps because the majority of transgender and non-binary people identify as bisexual or another identity.
Mark, in the beginning of our study of our cohort of 500 gay and bisexual men our probability sample threw down the gauntlet, what would structural stigma look like among bisexual communities? I'm still struggling with that because, again, the majority of bisexual individuals are partner with people of other genders. When someone mentions plural marriage, I go, " oy vey I’m get shekels" because bisexual people can also be monogamous. It's not just an issue for bisexual people.
I do think that it's important to start thinking about this, particularly in terms of gender identity and gender minorities. It would be great if we had state or federal level data for gender minority-related issues. I do think with bisexuality in particular, within the structures of the LGBTQ plus community, which is really LG community in many ways I think we can start to do some structural work there because that's where a national probability samples of Americans just in terms of attitudes toward bisexual people, the lesbian and gay people, in particular, are in need of intervention.
Stef: Thanks for that. Can you hear me? Oh, my God.
Operator: Yes, we can.
Greg Greenwood: Yes. [crosstalk]
Paul: Okay, Greg. Sorry about that. I have a question here from Antigone Dempsey. I think this really applies to everybody. The question is, it's interesting to think about HIV stigma because I don't think you can separate HIV stigma from where it originated, which is that certain populations, certain communities are designated having HIV. Can folks maybe talk- I think this is very much at the heart of intersectionality, and I think maybe lots of folks here are really well-suited to take on that question. Does somebody want to take that on?
Dr. Hargreaves: Stefan, I can have a quick go and say two things. One, I agree that it's hard to disentangle those two things. I was going to say two things only. One is that I agree it's very hard to pull apart those things. In the settings where I work in Southern Africa, there is I think a growing sense that some degree of normalization around HIV and particularly accessing HIV testing services has happened. Increasingly those longer standing prejudices that were there before HIV came but they were heightened by HIV where stereotyping occur. Those are residual and stay round. [unintelligible 03:03:31] The way that people talk about HIV is changing.
Stef Baral: Okay. Brian, I'm not sure if you can hear us, but there's a question here for Dr. Bowley. I think it actually speaks to some of the elements that we heard throughout, but really about the importance of measuring both the structural determinant, as well as lived experiences and it'll lead nicely into another question from Deepa Rao, but really if you could maybe tease apart from your work a little bit, teasing apart structural elements and then the lived experiences among, for example, people and their perception, views, and mental health effects as well.
Dr. Bowleg: If I think I understand this question, the lived experience is critically important for centering as I talked about that as a core concept earlier, particularly, when researchers are not members of these groups. It's very important to understand from the inside of what it means to be a member of one of these groups, and so that's really important. I guess one of the things that I do want to highlight is that as important as it is to for front lived experience, it is also just as important to burden this on researchers to be very cognizant of the structural reality,
?Speaker: Mark, do you want to take that because my receptions really spotty?
Dr. Bowleg: - otherwise, we run the risk of if a person didn't report this experience on a self-report measure, the person didn't say that they were stigmatized, didn't say that they personally experienced discrimination, that it doesn't exist, and that's really problematic.
We understand that there are systemic and historic and structural forces that are at play, regardless of whether or not people mention them or not. This is sort of like one of these traps with intersection that we can run into, be like, "Oh, well, people just- they didn't talk about the racism, they only talked about the heterosexism, and so then maybe it doesn't exist." That's one response to that.
If I may, I wanted to say something about the previous question about separating HIV stigma from where it originated. We understand that when the stigma is in a group, that has been historically oppressed, that we can expect the stigma would be worse.
A good example of this is the shifting tide on the opioid crisis when it happened in the US and it was happening in white people. All of a sudden, we saw this very compassionate response that had never accompanied substance use when it was in black people. We know that there are all sorts of structural factors that ensured that black people who are using drugs would be criminalized and locked up and so it is very important that where the stigma originates or is perceived as originating so it informs how we treat them in terms of interventions, law, research and so forth.
Stef Baral: So, just to say, there’s a question here from Deepa Rao that maybe Lisa and others could really speak to because I think it builds on your- it's a comment that was just made about lived experiences, but just maybe speaking to the importance of NIH adding lived experience as one of the review criteria for these grants, and really ensuring that people with experiences, these lived experiences, including black and indigenous and people of color, PIs work really being brought to the floor. Folks want to speak to that, but I think obviously you're not the NIH, but just if folks want to share some perspectives on those elements.
Dr. Bowleg: I'll go. I think it's critically important, but I also think that there's a further step, and that is that community-based organizations. Organizations, they have the type of community, they have the commitment, they're often doing the work, but with very little resources. There needs to be some way to sort of share the power, whether it's sharing the resources so that they can continue to do their work.
There's really a need, as I say it, for several community-academic partnerships that are really grounded in mutual respect, grounded in some shared power, such as the academic researchers we bring or academic training, and all of that, but the recognizing and valuing the assets and knowledge and indigenous knowledge in communities. There needs to be a way so that it's not just the researcher getting the funds or going to communities or help us collect data, there really needs to be some type of structural shifting, I think, beyond just celebrating or acknowledging lived experience.
Paul Gaist: That's really helpful. It pains me, I'd gone through each of the presentations and prepared questions, we have like a dozen unanswered questions for this group and we are perfectly out of time. I really want to thank all of the speakers. A lot of the questions that are here, some of them are technical, including ones for Dr. Kalichman, Dr. Hudson and Dr. Rendina in fact everybody about scale development, about some of the analytic approaches, and I think that's at the heart of these measurement challenges. These are incredibly complex elements, and I think we're all working on appropriate measurement strategies. We heard some really rich examples of that today.
I think this is where this is going to close, which is painful for the measurement section, for those of us who work, but obviously, we are going to be continuing this work throughout the summer. I'm appreciative to all of our speakers and want to give, I guess, a virtual round of applause as they are for that. Thanks very much.
Greg Greenwood: Great. Thank you, Steph. With that, let's take a five-minute break. We'll be back in five minutes and start with the intervention.
Paul Gaist: Welcome back, everybody. It is my pleasure to get the next panel started by introducing the panel moderator. Dr. Janet Turan is a professor in the Department of Health Care Organization and Policy at the University of Alabama at Birmingham School of Public Health. She's the director of the UAB Sparkman Center for Global Health and co-director of the Behavioral and Community Sciences Core at the UAB Center for AIDS Research, the CFAR, and she is serving as the moderator for our next panel on interventions. Dr. Turan.
Dr. Janet Turan: Thank you very much, Paul. I hope you can hear me.
Paul Gaist: Yes.
Dr. Janet Turan: Great. Okay. I am excited to be moderating this panel because it's great to see that interventions are actually being started to be developed that are really attempting to address a variety of combinations of intersectional stigma. I think you'll see in this panel, some very thoughtfully developed interventions, including interventions that deal with either community or healthcare settings, interventions that address providers, and also, the people that are actually experiencing intersectional stigma.
You'll also see examples of this panel from different settings across the globe, including China, US, Ghana, and Brazil. The stigmas that are being addressed include HIV, sexual orientation, gender nonconformity, sex work, and substance use. I think this will all give us some great ideas and models to start building on. The presenters in this panel include Dr. Kumi Smith of University of Minnesota, along with her colleague, Sean Sylvia of UNC.
The next presentation is going to be from Victoria Frye of CUNY School of Medicine. That's going to be followed by a joint presentation by LaRon Nelson of Yale and Laura Nyblade of RTI, followed by a presentation by Laura Bogart of RAND, and then wrapping up, from UCSF, Dr. Jera Lewis and Dr. Sheri Lippman. With no further ado, let's go ahead with Kumi Smith.
Dr. Kumi Smith: Great. Thank you for the introduction and for a chance to speak. I'm hoping the slides will load in a second. I'm Kumi Smith and I'm presenting on behalf of myself. I'm at the University of Minnesota. I used to be at the University of North Carolina where my co-PI Sean is. We are an epidemiology and health economic co-PI team.
Our team works on healthcare stigma. That's enacted interpersonal stigma in which healthcare providers exhibit discriminatory attitudes and behaviors towards patients of marginalized identities. Many stigma reduction trainings for doctors exist. They often address more than just HIV stigma, out of the awareness that the interlocking nature of intersectional stigma means that our failure to address all of its forms can undermine our ability to address even one of them. The very interlocking nature of intersectional stigma can hinder our ability to assess whether and how our interventions are impacting it.
To address this, our team went back to the basics of interpersonal stigma where you usually have roughly two people. We reflected on the fact that every instance of enacted stigma involved an enactor and a victim. In our case of healthcare stigma, the enactor is often the healthcare provider, the victim is often the patient. What we understand to date about enacted stigma unfolding in clinical settings tends to come from one of these two sources, the patient, or the provider.
If we ask the doctors, the so-called enactors to tell us what's happening in their clinical encounters, they do have high incentive to not tell us the entire truth. This is social desirability bias. If we ask patients to report on the stigma they experience, we expect less bias, but it can be challenging for victims to pinpoint the exact reasons that someone may be treating them poorly, especially if they are a very complicated clinical case.
One potential idea that we have is that we could introduce a neutral third party to observe, witness, and report on the enacted stigma taking place in these clinical encounters. For example, we could have a study team member who shadows doctors and observes what happens as they carry out their clinical duties. We know from experience that clinicians under observation will alter their behaviors, a phenomenon known as the Hawthorne Effect. Our solution to this is to, therefore, supplant the patient with the third-party observer, who then can assume the role of being both the so-called potential victim and the observer at once. This can be achieved with a technique we call the unannounced standardized patient visit.
It was borrowed from a long tradition in medical education of using standardized patients that is trained actors who specialize in role-play and constructive feedback with medical trainees. As depicted in the picture, this type of training usually happens in settings where all parties are aware of their assigned role and the standardized patients, we call them SPs, are seen as a member of the training team.
Our project takes this concept a step further by having our SPs conduct unannounced visits, in our case, to sexually transmitted disease clinics of interests. Our SPs are members of the local community of men who have sex with men, who we recruit and train to present a standardized case at each visit and then report back to us what happened. Visits are only conducted with providers who consent to it in advance. This is very important and often missed so I will say it again. This is only conducted with providers who consent to it in advance. However, providers are not told when the visit will happen. Our hope is, of course, that they will not realize that the patient in front of them might be one of our SPs.
Our SPs undergo rigorous training in advance to ensure that the cases that they present are highly standardized and to ensure they can accurately and objectively observe provider behaviors during the visit. Details of what happens in the visit are recorded immediately following it by a team member who administers the health care checklist to the SP. This work is taking place in STD clinics in Gwangju, China. China's where Sean and I have worked for most of our careers. It should be no surprise that our work has also been paused by the COVID pandemic.
Regarding the intersectional aspect of our work, we randomly vary the HIV status and sexual orientation that our SPs present across visits. This allows us to compare what care looks like across multiple stigmatized identities. This table shows how we can compare what happens when an SP presents as either a straight man living with HIV, as a man who has sex with men who does not have HIV, someone with both identities and someone was neither.
The value in each of these cells will eventually represent a score that reflects the average quality of care received in every instance when an SP presented with that specific profile. Comparing each of the three identities with the reference case, in our case, a straight man without HIV is our approach to separately quantifying HIV stigma, homophobia, and their intersection. This may help us test that common hypothesis of whether the stigma experienced for multiple identities is greater than the sum of its parts.
Our ultimate goal is to use what we hope and expect will be objective and specific observations of the patient-provider encounter to inform the design of a targeted training that addresses the real problems that we're actually observing in the clinics that we're working with. We are planning to do so by formally sharing back the results with two separate community advisory boards, one of providers and one of MSM. Doing so we hope lets us leverage valuable input from those closest to the problem and to help us reconsider the drivers of stigma that they're proceeding to be happening in their peer group and may likely establish a way to help the community help itself.
We have just two quick examples of how we think insights gleaned from SP visits might be able to fuel creative new ideas for ways that we can help providers provide more patient-centered care for these stigmatized population. During one of our pilot SP visits, an SP reported back to us that he visited with a doctor who had very satisfactory clinical behaviors. However, he had a colleague who exhibited really highly stigmatizing attitudes. In this case, it was a colleague who warned other patients in the waiting room not to enter the exam room because someone with HIV had just been in there.
This finding might be the type of thing that would suggest that, for example, maybe our training should incorporate a component to empower doctors and give them tools to navigate difficult conversations about stigma with their colleagues. A second example is another SP who reported that a doctor he saw actually thanked him for sharing his HIV status and proceeded to provide a high standard of care. This was not the norm but was something that we did observe.
This finding might suggest that we could think about the positive behaviors that are already taking place in the community and help us think about shifting our role as researchers from one of instruction rather towards facilitating more peer to peer training among doctors themselves. We're hoping, obviously, for more insights as our study progresses. We're very happy to take questions during the Q&A. Thank you.
Dr. Turan: Thank you very much, Dr. Smith. That was a really nice and very concise explanation of your work. Now, we'll move on to Dr. Victoria Frye from CUNY School of Medicine to tell us about their work in the US.
We can't hear you, Dr. Frye.
Operator: You may be muted.
Dr. Victoria Frye: Can you hear me now?
Dr. Turan: Yes.
Operatorr: Yes, we can.
Dr. Frye: Okay, great. Community-level interventions rest between structural interventions, such as state-level policies and peer or network level interventions. They often focused on shifting attitudinal or social norms like HIV stigma or behavioral norms like HIV testing at the community, as opposed to the individual level. While they may be included in what Parker and Aggleton called the broader social, cultural, political, and economic forces that structure stigma, they are not structural interventions per se but as Mark Hutzenbueler pointed out, they can influence structures such as policy.
However, when viewed or implemented through a deficit lens, they do run the risk of shifting and blame the individual approach to blame the community, when in fact the community has been influenced by larger structural and political-economic forces. Evaluations of community-level interventions are extremely challenging.
I'm going to talk today about a project called CHHANGE. Our research team pictured here evaluated a community-level intervention to prevent HIV stigma and homophobia and a high HIV prevalence neighborhood in New York City with funding from NIMH. Thank you, NIMH. Called CHHANGE, Challenge HIV Stigma and Homophobia, and Gain Empowerment, it was a community-academic partnership between Gay Men of African Descent, Brooklyn men connect, and researchers up at New York Blood Center. Pictured here our key team members, including Mark Paige and Dave Matthews, who are also here at today's meeting.
CHHANGE focused on HIV stigma and homophobia because they've been intertwined in the US since the beginning of the HIV epidemic and because empirical evidence finds that both acts as barriers to uptake of HIV prevention and care, including testing, ART have been prepped at various levels of the social ecology. We organize CHHANGE to shift stigma and homophobia at the community level separately and in combination, in order to increase access to testing care and prevention using multiple intervention opponents. It reflected key aspects of Link & Phelan's model of the stigmatization process, particularly the essential functions of stigma to keep people in, out, or down which also demands attention to whose interests are advanced through stigma and discrimination.
It was steeped in the theoretical and lived expertise of the study team related to the critical role that community cohesion, mutual aid, and solidarity play in the surviving and thriving communities of color in the context of a white supremacist US society. This hinged on the protective function of community, including perceptions around the stigmatization process as protective and community members, deep desire to protect loved ones from the external harms of US society by keeping members in a state community.
Finally, it was based on the notion that communities have the capacity to identify and solve their own problems. That's the first phase of CHHANGE involved a series of steering committee meetings to inform the design and conduct of the study and the whole project was, as I said before, a community-academic partnership. To evaluate it, we use the quasi-experimental match community study design. The intervention and control communities were predominantly Afro-Caribbean in the same borough of New York City but not adjacent to one another.
The explanatory CHHANGE model posited that community-level stigma and homophobia specifically enacted stigma and discrimination lead to individual-level internalized stigma and shame, anticipated stigma, concealment of sexual identity, nondisclosure of both sexual behavior and HIV status is positive which reduced direct access to care prevention. As well, experiences of stigma and discrimination, including family rejection, institutional violence, for example, in schools or healthcare settings, increased psychological distress, which increase negative coping skills like alcohol and drug use and sexual activity that enhanced HIV vulnerability and decreased access to care and prevention. Finally, these combine to increase individual risk of HIV infection, transmission, which increase community viral load.
The main change components which were adapted from program components developed by GMAD and CAMBA included workshops and trainings for CBOs and businesses, street-based popup events, as well as the fixed space event, and a universal prevention message. Within each component are a model of CHHANGE focused on reducing engagement in enacted stigma among community members to improve community health. An integrated set of intervention techniques including enhancing visibility, increasing contact, educating on stigmatization processes and effects, enhancing empathy and perspective-taking, challenging stereotype beliefs, raising critical consciousness, and teaching skills to analyze an interrupt stigma and homophobia.
Okay, sorry, the animation is a little slow. We had events at a fixed space. We, also, had pop-up events, which were designed to enhance visibility and increase contact. We had workshops and trainings that were designed to train individuals and community-based organizations on how to interrupt stigma, and finally, we had a universal prevention message that was designed to raise critical consciousness and, again, enhance visibility.
CHHANGE address stigma and homophobia separately in combination so we can conceptualize it both as an additive like a double whammy, and also, as interacting to exponentially increase the damage done by both of them. Most critically we conceptualized homophobia as a system of oppression, a notion that was well understood by the Afro-Caribbean black and African American community residents that we were working with.
Our evaluation used pre-intervention and post-intervention, serial cross-sectional surveys in both intervention and control communities. We adjusted via propensity score matching and use GE models to assess its impact. Unfortunately, we did not detect an impact of the intervention on the community level attitudes, but we did see a 350% increase in HIV testing at the fixed community site. Sorry, I'm advancing my own slides slowly.
There were many challenges of CHHANGE. These included the large spatial boundaries that potentially reduced penetrance and intensity and increased the potential for positivity violations, potential for contamination across communities. That buses travel and so bus shelter ads might have been seen among members of the control community, potential unassessed lagged effects, social desirability and outcomes, and a lack of archival data to efficiently evaluate the intervention. Those last two were discussed at length by others earlier.
Something that was not a challenge but was a critical context with CHHANGE was that as we were implementing it, the Black Lives Matter movement was spilling out onto the streets of New York City after the murders of Michael Brown and Eric Garner by police. This movement was inherently intersectional, reflecting the intersectional identity so the women of color, two of whom self-identify as queer who founded the movement. Like the Black Lives Matter movement, the CHHANGE intervention components were designed by and for communities of color. The Shoe Drop event was designed by CAMBA. The CBO training and bus shelter campaign had been designed by GMAD. BMK, the space and the intervention community was led and staffed primarily by Gay Black Men.
We believe that this is why an intersectional approach that centered the experiences of racism and people of color in the context of white supremacy was baked into the CHHANGE components because they were designed by and for black people and for other people of color. While CHHANGE was co-led by Vaugh Taylor-Akutagawa as the executive director of GMAD and myself when the chance to adapt the intervention came along through our new study called CHHARGE, GMAD organization had suffered severe funding cuts and was in the midst of a reorganization.
This reflects a massive challenge faced by intersectional organizations that take a holistic approach to community health which is the lack of investment that would allow a non-fragmented approach to community health, in this case, Gay Black Men's health and wellbeing. Other challenges that we face are emergent stigmas. We know about emergent stigmas related to COVID but in particular, we have evidence of emergent stigmas related to HIV testing and to prep and test.
We developed the CHHARGE study to respond to both the methodological challenges of evaluating a community-level intervention and to address emergent stigmas that have been found to act as barriers to HIV testing and prevention. The study involves applying a systems thinking methods approach, informative research, ideating and prototyping new intervention components, and piloting the adapted intervention using optimal study design features.
A critical explicit focus of the intervention is on interrupting novel and intersecting stigmas and discrimination in the context of a racist society. Thus the new name CHHARGE includes an R for racism. Our study team includes many of the same members. We also have new experts in design thinking and we are currently focusing now on causal loop diagramming, a key component of the model building process to characterize how known and novel stigmas intersect to impede testing and prevention. The approach allows you to develop complex models that you can test via simulations to estimate the impact of changing specific parameter input.
We're currently elaborating on existing stocks or variables Dr. Lounsbury's and colleague's existing model by conducting focus groups and in-depth interviews with key informants, experts on various aspects of the overarching system including service providers, gay men of color, and community residents. These are examples of the new causal loops that we are developing.
Once we complete this phase, we will engage in ideating and prototyping the novel components in consultation with intervention design experts. These will be integrated into the existing CHHANGE components and then the reconfigured intervention will be piloted using optimal study design features identified in consultation with a team of methodologists expert in evaluating area in community-level interventions using some of the novel methods that Mark noted previously, like archival big data, as well as capitalizing on ongoing longitudinal intervention studies, sort of like what Jonathan has been talking about.
The CHHARGE team now also includes MOBI, Mobilizing Our Brother's Initiative, an entity that curates social connectivity events for queer people of color, where they can see their holistic self while promoting community wellness and personal development. MOBI exists in both the virtual space as well as in real life, a crucial engagement approach in our new normal where almost everything has been or can be virtual. We continue to face a leadership challenge in CHHARGE with a gap in gay black study leadership which reflects the institutional racism of academia. We are actively discussing this issue and really challenging ourselves in it.
We're talking about whether I as a white cisgender woman and a trustworthy partner. We're attempting to, also, address it through a flatter more democratic study team organization and elevating into leadership roles of long-time team members who may not have a backgrounds in science or PhD. The fact remains that studies about stigma, homophobia, and racism really do need to be led by people of color from the communities most affected which has been said already several times today.
It is our hope though that the adapted CHHARGE intervention-- Oh, I think I somehow skipped over the MOBI picture. There you can see some pictures. It is our hope that our adapted intervention will reflect the intersectional social movements as well. That are again, spilling out onto the streets in New York City and all around the country and transforming our society. This is the spirit we're trying to channel.
Dr. Turan: Thank you. Thank you very much, Dr. Frye. I especially appreciate the fact that you've shared a lot of the challenges of implementing intersectional stigma interventions and being very honest and open about that. I hope that'll stimulate some good discussion. We will move now to our next set of presenters, Dr. LaRon Nelson of Yale, and Laura Nyblade of RTI and they'll share with us the work that they've been doing in Ghana.
Dr. LaRon Nelson: I hope you can see me. I can't--
Dr. Turan: Hi, Luran. Are you ready? I think we have Dr. Nyblade with the video and Dr. Nelson by voice.
Laura Nyblade: Hi, LaRon you're not logged in.
Dr. Nelson: Oh, you can't hear me? [crosstalk]
Laura: We can hear you.
Dr. Nelson : I'm trying to share. Good afternoon. It is my pleasure to be here with my partner Laura Nyblade to tell you about the study we're leading in Ghana of a multi-level intervention addressing intersectional stigma to improve HIV testing in men who have sex with other men. We want to first start by nudging our team which includes academic partners at the University of Ghana, School of Public Health, civil society organization partners, and familiar names in intersectional stigma research like Carmen Logie at the University of Toronto.
In this study, intersectional stigma is conceptualized as HIV stigma, same-sex stigma, and gender-nonconforming stigmas. Our approach to this work is guided first by the social-ecological model, which addresses the multiple overlapping influences, public effects of stigma operating at various levels to impede HIV testing. We focus on addressing and detecting stigma at the organizational level, concerned with the climate within healthcare facilities, and the ways in which that might impede testing at the interpersonal level, which is the group or social network of other men have sex with men and the climate. The relation or social time they're treated within these network, norms that can either be supportive or undermining HIV testing. Also, at the interpersonal level dealing with the internalization of intersectional stigma.
We also use Bryan Wiener's convergent framework, which is a model for how and why to combine multiple interventions that are operating at different levels. Again, this was necessary because the influence of intersectional stigma on HIV testing is operating at multiple levels.
Dr. Nyblade: Thanks, LaRon, for setting the context for our study. Now, I'll start out by sharing a bit about how the study is operationalized with some details about the study design, and then we'll talk about the interventions at each level, as well as the measures that we're using at each level. As others have said, we have unfortunately had our study paused by the COVID-19 pandemic, but we hope to get started again soon.
Our study design has two phases and we'll start with the first phase here. In the first, and this is the formative phase, we begin with focus groups and in-depth interviews with both men who have sex with men and health care facilities staff. This formative work will sharpen and deepen our intervention content and the combination of the interventions at the three levels by examining the drivers and manifestations of HIV, same-sex, and gender-nonconforming stigmas within health facilities, and within MSM peer groups. It will also help us understand how these intersecting stigmas undermine HIV testing among MSM, which is our key outcome.
In addition, they will also provide perspectives on strategies for reducing intersectional stigmas within healthcare facilities and among peer groups. Once this data has been collected, it will be used to refine the intervention content, as well as the integration of the three levels and it will be reviewed closely by a workgroup of gay men, MSM, and healthcare facility staff. Once we have all of this input, we will generate a manual which will then be further reviewed by topic experts, and then we'll further refine it, have a rehearsal before we enter into the trial phase.
This multi-level intervention seeks not only to reduce stigmatizing interactions and health facilities and among peer groups, but also to build skills agency and social assets among MSM peers and within healthcare facilities to challenge and reduce intersectional stigma. We also aim to strengthen partnerships between healthcare facilities and MSM civil society organizations for intersectional stigma reduction through the joint design and implementation of this intervention.
Our next stage which is- it's the trial phase involves eight healthcare facilities in two urban areas of Accra in Kumasi in Ghana. They'll be matched by city inside the staff. Each match healthcare facility pair will be randomized to have an intervention, which we'll talk about shortly, and a control arm. Before assignment to healthcare facilities, 216 MSM recruited through peer-driven methods will be randomized to receive the intervention, both at the peer level and at the individual level, or routine standard of care. Each arm of the MSM will be assigned to the healthcare facility in the corresponding arm intervention or control and asked to stay in the assigned healthcare facility clinic pipeline for HIV testing prevention services. This is a weight lifted design so all MSM will eventually get the intervention.
Now we'd like to turn a little bit to share about each of the interventions and the measures we'll be using. Here we go. [chuckles] I'll start by talking about the healthcare, the organization level at the health care facility. We're going to be adapting the health policy plus HIV stigma reduction total facility approach, and there's a purpose to the word total, which I'll talk about in a minute. This is an intervention that we had been tested in Ghana, Tanzania, and Thailand. It's HIV focused, but we've had elements of addressing same-sex stigma, and also, stigma towards adolescent seeking sexual and reproductive health in these countries. We'll be building upon that to address the intersectional stigmas of HIV, same-sex, and gender nonconformity.
What we'd like to highlight about this intervention, and we have materials that are written up about how it operates or how its implemented, is that it's built on over two decades of both research and programmatic work. It recognizes the importance of everybody in a health facility, not just the clinical staff, in creating an environment that is stigma-free. We've learned from our work that oftentimes intersectional stigma or individual stigma starts at the gate and oftentimes are at the reception and oftentimes clients do not even get to the clinical staff, so it's important to involve everybody.
We also find that it empowers lower-level staff in health facilities who are often experiencing a different kind of stigma to know that they actually play a very valuable role in everyone's healthcare so involve all levels of staff who have face to face interaction with clients. It's key that is delivered by and designed by health facility staff and clients together, working together. That becomes already a stigma reduction intervention if it's designed together.
We start with the analysis of the baseline data where staff and clients work together to actually look at what has been collected, identify the stigmas that are happening, and begin discussing and deciding on how they will move forward to intervene. We have participatory interventions, stigma reduction intervention that's delivered. This is delivered by staff and clients from the health facility who are trained to deliver the intervention. The intervention's not delivered by outsiders, but by staff and clients from that facility, which is really important.
Lastly, we have facility champion teams that we have found emerge organically from these trainings, who then work on some of the issues that have been identified through the training and the baseline data collection. Most often these are about space or institutional issues around policy. Within the health facility, we're intervening at the individual level but also at the small structural level of the health facility. At the health facility, we'll be using multiple measures to assess how the intervention is working. We'll be measuring HIV stigma and discrimination among health facility staff in different ways, in six domains that we use there. We'll be using the LGBT phobias, attitudes, and cultural competence scale, as well as the Gender-Equitable Men scale.
With that, I'll pass it back over to LaRon, to talk about the other levels.
Dr. Nelson: Thank you, Laura. We have two other levels. One is the intrapersonal level, which really deals with intersectional stigma that has been internalized, [unintelligible 03:44:40] the intervention that we're using for that is called high three, HIV empowerment, education, and empathy. As Laura mentioned, all these interventions will be adapted to enhance that focus on intersectional stigma. This intervention is a peer-based intervention. It's a mobile web app, and it's based on the peer support model by Cindy-Lee Dennis identifies three types of support which will
hopefully build resilience and counteract negative stigma from being internalized amongst the MSM. This is informational support, and emotional support, and affirmational support. This model uses local peer mentors that will nurture social-emotional resilience among the men and again, that will help mitigate the internalization of intersectional stigma.
This is an integration that has been previously implemented in Ghana with them MSM and the interpersonal intervention, which is the group level between personal intervention. It's called the octuple, but it is based on Many Men, Many Voices. Many Men, Many Voices is the CDC designated best evidence intervention. It is group-based. It has shown efficacy for increased HIV testing and shown a few episodes of condomless intercourse whenever tested.
In New York City, in Brooklyn, in a place where we thoroughly do our work. We believe that it addresses behavioral and social determinants of HIV risk. We did also previously implement this in Ghana. It was actually adapted previously for youth facility with MSM in Ghana, some cultural adaptation some social, from language, but much of the logic underlying Many Men, Many Voices did not change.
Again, the plan is adapted to address intersectional stigma, addressing HIV stigma, same-sex stigma, and gender-nonconforming stigma. We imagine that using a latent variable intersectional stigma that we actually used in previous studies, but one of the HIV stigma scale which has the four steps as you see listed here, the same-sex stigma scale and the gender-nonconforming stigma scale. Those are the two manifest variables that we're using, and we'll use that latent variable as our measurement checklist among the men in the study.
For our recommendations, some of the things that we were thinking about, it will be important for you to consider as well as how to expand and test these types of integral elements to address stigma that also impacts cisgender women, but also transgender persons as well in adolescence. In the process of was understanding work with our community partners, but how to implement this, these are some of the things that are coming up. There are some assumptions about how we think groups are organized by saying we're focusing on groups of MSM, which don't account for the fact that the other way, all the way, that queer men, men who have sex with men organize themselves which don't only include other MSM. It's important to also capture and accommodate the fluidity of gender identity.
The different things that people are men at a time they enter the study, and they'll be men throughout the study, but just on some of our work got to understand that people's gender identity is fluid. I'm thinking about ways they have things that can accommodate for that type of fluidity, and what challenges that might have for outcome measurement, so given these community partners, throughout the process from proposal development on through dissemination.
Also the importance of cultivating government engagement at the healthcare facility level, particularly in places like Ghana, where many MSM do rely on public health facilities, but the entryway to those facilities are through some pretty sophisticated diplomacy. Our local partners understand how to do that work, but that's important work that must be done if you're going to do product that well. That can be scaled to a degree and has got the impact that we're trying to have in this community. Thank you.
Dr. Turan: Okay, well, thank you so much. We are definitely going to look forward to seeing what the results when you're able to implement and test these interventions. I think it's a really good example of, again, combining both the structural and the individual level interventions in one approach. Now I'd like to move forward and introduce our next speaker who is Dr. Laura Bogart of RAND, and she's going to tell us about some exciting new interventions they've been developing.
Dr. Bogart: Thank you for the opportunity to present today. I'm really grateful for this opportunity. I'm going to be presenting on a group level community based cognitive behavioral therapy or CBT intervention to increase effective coping responses to intersectional stigma, address medical mistrust and improve health outcomes among black and Latinx immigrants sexual minority now. These projects were developed with three pilot studies, with community engagement with people living with HIV. They were developed with the Fenway Institute and Multicultural AIDS Coalition in Boston, and [unintelligible 03:50:31] Human Services and UCLA Health in Los Angeles.
I'll be presenting some of the results for the pilot study today, but we also have two impressive RCTs now. The first one Still Climbin is the one with black sexual minority men. It was named after a line in a Langston Hughes poem, and it's to increase preventive care engagement and receipt of evidence-based preventive care among black men. This is regardless of [unintelligible 03:50:56] status because we heard in our pilot work how men really wanted us to expand the intervention and talk more holistically about their health in general.
The second one is called Siempre Sequiré and that's from a line in a song that's become a gay anthem of empowerment, and both of these were named by community partners. This one is the PRISM study and it's increased HIV testing and PrEP use among Latinx immigrant sexual minorities men of HIV negative or unknown status.
I want to start with an analogy of a burning building. Yes, a lot of times when I present this to community partners or in academic circles, I get the question, why are you focused on the individual level and building resilience where we really need to change the structures of society. A community partner actually, at Fenway Health came up with this analogy to talk about the study, to say that if there's a building that's on fire, you don't keep the people in there and put out the fire. You engage in efforts to get the people out and to put out the fire, and then to figure out why did the fire start in the first place, so we can prevent these fires from starting in the future.
That's what this intervention is trying to do to build individual level awareness and resilience around racism and discrimination so that we can take action more at the structural level once we're aware. I also put a quote up here from Kareem Abdul Jabbar who wrote a recent op-ed in the LA Times, that also used this burning building analogy that I thought was very relevant to this study as well, saying African Americans have been living in a burning building for many years, choking on the smoke as the flames burn closer and closer. He talks about how racism can be invisible until you build awareness and you notice it. Then you can shine a light on it and stay vigilant because it's always in the air.
It talks about the intervention content is structured, it's the same across both interventions, one for black and Latinx men. It's a community-based group session that's run like a support group with a cheer counselor using CBT strategy. Using CBT strategies, we teach participants for that how to conduct a behavioral analysis of their thoughts, emotions, and behaviors in response to intersectional stigma and discrimination and enhance their awareness of stigma and discrimination and figure out adaptive ways to cope while still maintaining their life values and goals.
We also want people to practice it because it's a CBT intervention. Go out and practice in their daily lives and then you come home, come back to the group, and talk to us about how did it go. Getting feedback from the group about different strategies people use, any different reactions that they had when they went outside of the group. We integrate intersectionality, so participants discuss how their multiple interlocking identities comprise their holistic sense of self. We also talk with them about processing stigma and discrimination and how it affects the whole of their identity, rather than the separate components of it.
The sessions topics here, and we start with psychoeducation about stigma and discrimination and defining it so that people are more aware when it happens. We do have people in the group who aren't always aware when they're experiencing it, and this helps them to share what other people's experiences are and also to model how other people respond. We talk about the definition of intersectionality and their identities.
We talk about how to use a CBT model which I'll show you an example in a moment, and how to identify and overcome barriers to effective coping. Then we talk about medical mistrust and internalized stigma is two forms of coping that can be ineffective, for example, maybe leading to lack of engagement in health care or health behaviors. We talk about social support as an effective form of coping. We close the sessions with a discussion of structural discrimination. We provide resources for participants some local resources, how they can take action in their communities, how they can continue now that they're empowered to go out and identify discrimination and do something about it.
Here's how the CBT model works. We talk with participants how there is an event that they might interpret as discrimination. Then they have a coping reaction. We talk about how they might have internalized thoughts and feelings. They might feel like they deserve this. They might feel shame, anger, fear, sadness. We talk about how few behaviors that may not always be effective in the moment, they might display anger, they might conceal their identities, which over the long term may be hurtful to their health. They might avoid certain people in places which can be a survival strategy, but sometimes maybe ineffective if they're avoiding healthcare, for example.
Then we talk about how to apply the CBT model to these reactions. There's an event that they interpret as discrimination and they may say, "Oh, this is one of those times I need to think about." They have their coping response. One thing we found in our qualitative pilot work, a lot of people had more resilience in response to discrimination externalized rather than internalized and so that's about the other person. It's not about me. We also talk about different feelings and behaviors that may be more effective. For example, feeling strong, not allowing this person to get in their way, showing self-compassion, feeling self-compassion, and also going and getting support from people who may share similar identities, such as in our group.
Two of our pilot tests were randomized controlled trials. Still Climbin, we found increased effective coping in response to stigma. This was measured by the Brief-COPE and the Africultural Coping Inventory. In terms of more active problem-solving coping, use of humor and use of self-protective strategies. Siempre Sequiré we found increased adherence. This was among people who were positive. Increased adherence to anti-retroviral treatment, decreased negative religious coping beliefs.
For example, not feeling like it's a punishment from God when they're discriminated against and decreased medical mistrust in the form of HIV conspiracy beliefs and reduced internalization stigma. We also found high acceptability of the intervention in all the groups that we've run. For example, in Still Climbin, someone said I'd recommend it to all men, all black men living with HIV. Then he ends by saying that to every person that's a minority. This and similar comments led us to make it a more holistic intervention, not just for people with HIV, but for everyone to talk about these issues.
From another intervention with Latinx men, this person said, "You realize you're not the only one. You know how to deal with situations." Clearly, the intervention shows promise, but more work is needed. We've shown it's feasible and acceptable. That preliminary effect on coping, stigma, mistrust, and adherence. It can be sustained by a cheer counselors in community-based settings such as support group structures. We're hoping that these in progress RCTs provide effectiveness data on other health outcomes.
Clearly, as I mentioned, individual level interventions are insufficient. We can empower persistence and provide resources and support to be change agents, but we do need complementary interventions to address structural discrimination. I just want to acknowledge the funders, many of whom are here today, NIMH, OAR, NIMHD, community partners and co-investigators.
Give a shout out to Ron Brooks and Joanna Bererra here today, and Phoenicia Dale who participated in the studies for Fenway. Thank you very much.
Dr. Turan: Thanks. Thank you very much. We're doing all that in terms of our time here, but we've now moved on to our last set of presenters, Dr. Jae Sevelius and Dr. Sheri Lippman of UCSF are going to share some exciting work they've been doing in Brazil. Thank you.
Dr. Lippman: Okay. Hopefully, Jae will be able to call in again. I want to first thank everybody for including us today and apologize that I'm looking this way because the slides are over there, even though the camera's over here. Our project is called Manas which is a slang term for the first sisters and it's about reducing intersectional stigma among high-risk women in Brazil to promote uptake of HIV testing and also PrEP. We have a lot of partners in this study, and I want to start out by talking about the academic partners. Jae and I are MPIs on the study and Dr. Gustavo Saggese is our Project Coordinator at UCSF.
The site PI is Maria Amelia Veras she's with the Santa Casa School of Medical Sciences. We also are working with the NUDHES (LGBTQ+ Human Rights Study Group). Our Study Director there is José Luis Gomez and our clinical sites include both municipal and state-run organizations, the Reference Center for HIV AIDS, CRT in Sao Paulo and also the SAE Compos ElÍseos. I also want to say while we're here, that we thank the NIMH for funding the study.
In terms of background, the epidemic in Brazil really is focused on key populations and trans women or transgender women experience 20% to 30% HIV prevalence in southern Brazil, where the study takes place. The infection rate among transgender women is over 55 times that of the general population. Prevention in Brazil really is lacking for the transgender community. PrEP is available, but only about 335 transgender women had initiated nationally by the end of 2019. The low uptake is not attributed to lack of interest or the eligibility. The low rates of testing are also not commensurate with the risk of infection. I think Jae might be back.
Dr. Sevelius: Can you hear me now?
Dr. Lippman: I can.
Dr. Sevelius: Excellent. Sorry about that. I had to log out and log back in. Where did we get to?
Dr. Lippman: Just went through the prevention. Do you want to talk about intersectionality next on the background?
Dr. Sevelius: Sure. Of course, as part of the PRISM initiative, the Manas intervention really looks at the experiences of transgender women from the lens of intersectionality. We think about the confluence of stigmas related to social identities and how those structural stigmas are reflected in the personal experiences of transgender women based on their gender identity, their race, whether or not they participate in sex work, substance use and their experience of HIV stigma.
The evidence base for our intervention really comes from peer-led programming that Sheri and I both have been involved in developing in collaboration with communities that target individual-level factors, dyadic factors through peer-led interventions with participants and group level interventions and really coming from a place of thinking about empowerment and how to leverage networks that already exist among transgender women and other key populations that we've worked with.
The objectives of the mono study are to address and reduce the negative health impacts of intersectional stigma that transgender women experience in order to improve HIV prevention strategies. Our first aim is around HIV testing. We seek to determine whether HIV testing uptake is higher among trans women that participate in Manas por Mana was one of the names we were considering. We're now going with Manas compared to waitlist control arm aim 2 is HIV prevention determined whether PrEP initiation and persistence is higher among trans women in Manas compared to the waitlist control arm.
Our aim three is looking at the mechanism. Really looking at changes in intersectional stigma, including reduction in internalized stigma, and increased resilience to anticipated and enacted stigma and assess how these changes impact HIV prevention. The Manas intervention combines two evidence-informed interventions that Sheri and I have been working with for a while. One is at the group level and one is at the individual level. The conceptual background figure is a little and distorted here but we have two conceptual frameworks that we're really drawing from.
One is the gender affirmation framework, which really looks at how both need for gender affirmation and access to gender affirmation impacts transgender women's experiences of intersectional stigma. Access to gender affirmation includes things at the structural level like access to healthcare. It also includes interpersonal stigma or interpersonal affirmation in terms of affirming relationships that transgender women might experience. Then this stigma process which is how people are able to pass or not pass or be read as cisgender and how that can enact stigma interpersonally as well as structurally.
Then the need for gender affirmation really came out of black transgender women's collaboration on this theory, thinking about how this differs within transgender communities in terms of people's desire for things like transition-related medical gender affirmation, the differences in people's desire to be affirmed as female versus really claiming a transgender identity and really living as trans. The fact that all of us experience more or less levels of gender affirmation, but that cisgender people, in particular, take this aspect of affirmation for granted. This comes out really out of identity affirmation theories, and in collaborative work with transgender communities.
Then of course, intersectionality as one of our conceptual frameworks. This particular figure is from Lacombe-Duncan and focuses on transgender women living with HIV and the different types of structural stigmas that transgender women living with HIV can experience but really is rooted in, of course, the work of black feminist theorists such as Kimberly Crenshaw, and the amazing work of our intersectionality researcher Lisa Bowleg. This is the conceptual model for Manas for the intersectional stigma reduction intervention. It's really focused primarily on intervening at the level of stigma experiences, internalized stigma, anticipated stigma, and enacted stigma.
There are these structural stigmas that are reflected in transgender women's experiences. What we're looking to do is to intervene with a peer-led intervention at the individual level, through dyads, peer navigators and participants and group level where we are building and strengthening networks of transgender women that exist already and leveraging them to provide HIV-related information to reduce stigma around talking about HIV. Also to help transgender women brainstorm about different ways of coping with stigma, and actually practicing those experiences.
What we hope to see is that health behaviors such as increased self-care, reduced avoidance behaviors that often results from traumatic and stigmatizing events, and increased stigma resilience will result in increased uptake of HIV prevention.
Dr. Lippman: Great. The Manas intervention is set up in two parts. The first is a peer-led group work that takes place over five sessions and then meets after a few months for a reunion session. The sessions are based as Jae was noting on our successful adaptation of other programming including the Shero intervention, originally done in the United States but adapted in Brazil two years ago. Also some of the group work we did during our Trans Amigas navigation program in Brazil in 2018. The content was really heavily shaped by community input.
We're also selecting peer leaders in pairs. We're aiming to have both an HIV positive and HIV negative peer navigator leading each group so that we can address HIV-related and PrEP-related stigma head-on. The peer navigators are going to lead groups of 8 to 10 participants through group work designed to bolster trans pride and gender affirmation also to address HIV prevention as well as safe transition practices and to address experienced stigma in the community setting in the healthcare context and within their relationships. As Jae noted, we're offering tools for resilience.
Then once the group sessions are completed, each participant is going to be assigned to one of their two group leaders for six months of one-on-one navigation support that's designed to help the participants with their experiences of stigma and other barriers to prevention and well-being in the healthcare context to support them as they continue working towards prevention, well-being and also gender affirmation goals. They set these goals for themselves with their navigator. The individual navigation program is also based on the Trans Amigas study and is a combination of structured activities and also unstructured check-in.
We've provided the titles of the group sessions here to give you a sense of the tenor of the work they're doing. For example, the session on gender pride, the first one explores trans identities and gender pride through identifying positive role models that combat internalized stigma, and also introduces HIV prevention options in relation to this concept of self-care. For example, the session on taking back the power discusses how trans-related stigma impacts one's sense of personal power and explores ways to reclaim one's power and couponing stigma.
During that session, the participants they explore assertiveness skills and practice communication skills for the healthcare context. These are all learning tools to challenge structural and interpersonal, enacted, and anticipated stigma. In each group session, we also include a moment to discuss and reflect on one shero or a transwoman hero, someone who inspires others with their work and their achievements. We've also integrated guided visualization and mindfulness work into the gender affirmation exercises, which is now of course doubly important in this time of increased anxiety and COVID-19.
Just in terms of COVID-19 part of the individual navigation work also includes referrals to needed social services, and our partnering group Nudhes is currently mapping COVID-19 resources for the transgender community that's going to be integrated into our navigation program. There we go. The study is a randomized weightless control trial, in which we will allocate 200% to immediate intervention, which again includes approximately three months of group sessions and six months of individual navigation. The other participants are going to be randomized to a waitlist control, so they'll all be offered the same intervention one year later.
The main trial phase includes one-year person time for every intervention and waitlist control participants. The second phase of the study is the delayed intervention phase gives us an opportunity for the control arm to receive the Manas intervention and simultaneously to follow the intervention arm participants for further six more months so we can look at the persistence of effects. I think I don't have much time so I will move forward.
The rolling enrollment of 400 participants will take place over one year. The recruitment of participants is going to happen from multiple sources including standing cohorts and those accessing services at our partner facilities and also through community outreach. Data collection is going to be conducted at our Nudhes office and also at the other participating clinics. We'll be doing clinical monitoring of PrEP through the national medications dispensing system, and also collecting dried blood spots for testing drug levels among those on PrEP to measure adherence.
Just to note that we are measuring intersectional stigma using the intersectional discrimination index by Scheim and Bauer. Scheim and Bauer, I hope I pronounced that correctly, including the subscales for anticipated stigma as well as enacted day-to-day and major discrimination. These are all attribution free measures. The items are prefaced with questions about experiences related to who you are. We're also using an adapted version of the resilience to stigma measure and for consistency, we also preface that measure with because of who you are and don't reference any one social identity.
Just to note that we're slowed down by COVID like everyone else. We're hoping to begin in October or November. Some of our focus right now is on adapting to COVID-19 and ensuring that our navigation team gets all the needed training on the original Manas content as well as COVID related resources. I just want to say community well-being was already fragile following the last presidential election and the administration currently in Brazil that's very unfriendly to gender and sexual minorities and to public health in general as was illustrated when they recently took down the country's COVID tracking website and also the HIV AIDS page. COVID-19 is only stating to magnify the vulnerability in this community. With that, I'm just going to dedicate this presentation to Bruna who was an activist and a star peer navigator on our last trial and an inspiration to everybody. Thanks.
Dr. Turan: We have a couple of minutes for the discussion, which is great, so we have some time for questions. I have one question here in the chat from Christina Rodriguez Hearts asking the last presenter, do you think the term high-risk women can be stigmatizing language?
Dr. Sevelius: Yes. Can I say something about that? That's actually the formal title for the NIH proposal and I do think it's stigmatizing language. I've actually had experiences in the past where having transgender in the title of my NIH proposal meant that there were groups that would Google that are, not Google, look for that term, an NIH reporter, and I would have been the target of transphobic activity in the past for putting transgender in the title of my NIH proposal.
Every time we submit a proposal, we have to weigh the public information that's available about it and how reviewers often understand. I think the questioner raises a really good point that it probably makes sense for us to use more of a lay title when we're presenting our study. That's one of the issues that has been raised.
Dr. Turan: Thank you. That's great. We have another question here from Ali [unintelligible 04:16:11] it's for Dr. Bogart, says, "I appreciate your CBT oriented approach to empower folks enhanced coping skills related to experience of stigma. You've mentioned a few times that complementary interventions are vital to address structural discrimination. I'd be interested to hear your thoughts on integrating DBT-based techniques and concepts such as distress, tolerance, and radical acceptance into interventions focused on the interpersonal and/or community level." I hope I was able to convey all that.
Thanks, everybody for coming back. Laura, did you get that? [chuckles]
Dr. Bogart: I think I got it. I'm not sure I'll be able to answer it sufficiently, but I'll try. I can see what we're doing and trying to integrate our basically CBT intervention with the community and describe that a little more. I could use for clarification of the question that doesn't answer it. Basically, we're providing as I mentioned, we're empowering people to go out into their communities for change and we're providing resources and talking about how can they make change for all of their identities.
Of course, a lot of the resources out there for one of their identities like a local Black Lives Matter chapter or getting the vote out to try to work with local policymakers and try to figure out who's best serving their needs, and who would be best to vote for and getting the vote out in that way. Trying to figure out where in their communities can they be empowered to actually make change, starting at the ground up. Although I recognize that leadership is needed also from policymakers to make the change and structural changes are needed.
Dr. Turan: Great, thank you. I have a question for Dr. Frye. I was just wondering, you had a lot going on, obviously, in your interventions, and I'm just wondering, is it possible on any level to disentangle all of these multiple intervention activities and figure out which ones are most important or most impactful?
Dr. Frye: Can you hear me?
Dr. Turan: Yes.
Dr. Frye: Sorry. The whole screen just blanked off. Presently, no. The way we designed the original change intervention, the idea was that the entire intervention package would have an impact at the community level and that we would be able to detect average or aggregate impact on community-level attitudes or social norms. In charge, we are in recognizing the methodological challenges that we faced, we are trying to improve upon that evaluation approach, and that is absolutely one of the goals is to be able to at least evaluate certain component parts, and possibly even at the individual level if needed in order to identify more clearly the impact of the intervention component.
Dr. Turan: Certainly, it's a challenge and again, maybe it's the package of everything together that works well. We'll look forward to seeing what you can do with that. I think here's a comment from David Matthew. I think it was LaRon who spoke to the implementation intervention to Ghanaian youth. What were some of the cultural adjustments needed to help make the intervention more relatable to participants?
Dr. Nelson: Thank you. It was things like, for example, at the end of Many Men Many Voices which was adapted for young people, at the end of the session, people just go back to their neighborhood. In Ghana, there was a sense that there needed to be some group formation. Actually, that it wouldn't be enough to come and have this experience and then for that to be it. That that three-day retreat experience, that group that was a different relationship that needed to be named and the leader needed to be identified.
I guess in some ways we might have saw that in America, but it was very clear in Ghanaian context that they came together just for the purpose of the intervention, were going to be called, I don't know, birds of paradise and LaRon was going to be their leader, and they were going-- That was something that we had to build in that we didn't think about doing. We hadn't done that in US context. One other issue was about being bisexual. In the original intervention, we haven’t spent a lot of time talking about being bisexual. It's stigma around black, being gay, or being a black gay man.
People in Ghana, it was all [unintelligible 04:21:53] idea what it meant to even be gay was a big challenge that because many of the men have sex with women, some because they have to for cover. Some guys they like having sex with women or having relationships with women. It changed how we had to think about how we were an integrated, categorizing people who rejected this nomenclature, that they were gay men versus men who have particular sexual desires and they enacted when and wherever they chose.
Those were things that would definitely not how the American version was structured that we had to adapt to make sense in the Ghanaian social context even for how they understood themselves in a way, different identities get stigmatized. The label itself, I think gay men mentioned that earlier was stigmatizing, the fact that you'd have to go to be in a box in and of itself was a stigmatizing process. Hope that helps answer the question.
Dr. Turan: Thank you. Maybe we have time for one more question from Marsha Ellis. Has anyone looked at how stigma is addressed at the household level where positive mothers or guardians might have to moderate their own openness about their status and HIV journey in order to protect their children's privacy and stigma that they might face? I don't know if anybody has. Maybe Dr. Lippman or Dr. Sevelius? Anything about how people deal with children in issues with children.
Dr. Lippman: Sorry, I haven't actually addressed that directly in my research. I think Marguerita Lightfoot has a fair amount of research on this topic and, unfortunately, she's not one of the panelists right now, but I would encourage the person asking the question to reach out to her. I think she might be on the phone, but I'm not sure if somebody else has--
Dr. Turan: Okay. Can you all hear me now?
Dr. Lippman: Yes.
Operator: Yes, we can.
Dr. Turan: [laughs] Okay, good. I'm sorry. I feel like my audio is going in and out. Okay, let's see, maybe we have time. Greg, do we have time for one final question, or do we want to need to wrap up at this point?
Greg: Yes, one final question. That'd be great.
Dr. Turan: Okay. This is from [unintelligible 04:24:36], how much traction are your different projects and programs getting with the government and community platforms towards addressing stigma as your data is showing them? Are you sincerely hopeful that they'll engage and respond appropriately? I'm particularly concerned about the sub-Saharan African countries and even here in the USA. This is about, I guess, the government response. Are these projects really going to impact the policy and governmental awareness?
Dr. Bogart: Hi, this is Laura. Can you hear me?
Dr. Bogart: Okay. I'd be happy to jump in first on that one and thank you for that really important question. I think it ended our presentation by actually, our last point being about the government engagement from early on, and I think it is a challenge and we do know governments change, but for us currently we've had engagement by key players in the government at the design phase of the research, so at the proposal writing phase and continue to engage them as we move forward, we're stalled right now.
We've seen in other works that I've been part of that's also been very important, ensuring that the right people from the government are involved in both the design of the research, in adaptation of the intervention, all helps to build that buy-in especially around sensitive topics, but it is an ongoing challenge. As Lauren mentioned, we have to bring out our diplomatic skills, [chuckles] which as researchers we might not always have in big abundance, but we've learned them.
Janet: I wonder, Dr. Smith, how about in China, have you had any interactions with the government about the work that you're doing?
Dr. Smith: That's a great question. In China, we can't do any work without buying from the government largely, so diplomacy, I think Laura Nyblade has got to be part of our training for anyone interested in working there, but likely anywhere. We're lucky in that we're working within the offices of a long-standing relationship between the University of North Carolina and the STD control center working in the province that we're operating in.
We're actually able to leverage that name when we're trying to recruit providers and say, "Hey, we're trying to do a project to improve healthcare quality service delivery, which is the charge of this organization." With that name brand, we can have better luck bringing doctors and participants on board. The hope two is, of course, what we find can then get implemented into long term strategy. We're optimistic about this aspect because our main contact who runs this Healthcare Quality Control Bureau actually wants to use our standardized patient visits as a technique just to see what's going on in this clinic in the long term. If we figure out a way to do this sustainably, safely, and reliably, we may be able to actually monitor stigma in the long term.
Janet: Great. Okay, well, thanks, everybody. I think this has been a great session and I'm looking forward to working more on this in our working groups in the upcoming phases of this workshop. Thank you.
Greg: Great. Thank you so much, Janet and all of our investigators. We are nearing the finish line. Why don't I invite doctors Geist, Goodnow, and Roush back if they're still available? We can just offer some brief concluding remarks, including some of the logistics in terms of next steps for the virtual workgroups, which we'll get started on shortly, so be on the lookout for calendar invites tomorrow. Doctors Goodnow, Roush, and Geist, if you would like to turn on your camera and mic, please. I don't believe Dr. Goodnow is able to join us and I know he had to get off just about--
Paul: Can you hear me?
Greg: Yes, we can hear you, Paul.
Paul: Okay. It seems like I've just turned on. Right. There we go. Okay. I think we sometimes get behind the curtain organizer turns us off and has to turn us back on I think, at times. This is great. As Greg has done, we're welcome back our co-chairs Dr. Goodnow and Roush. Let's see, Maureen is, Dr. Goodnow has come back in. Our co-chairs, Dr. Goodnow and Roush are going to give a few impressions and closing thoughts as Greg said, then he and I have a few last points to share before we conclude. Dr. Goodnow will begin followed by Dr. Roush. Dr. Goodnow? Might be on mute. Did we lose her? She was just here.
Speaker ?: Nope. I believe we can hear her.
Paul: There we go.
Dr. Goodnow: Can you hear me?
Greg: Yes, we can hear you.
Dr. Goodnow: Great, super. I just want to say thank you to everyone, this has been a fantastic afternoon. As many of you probably know, this is not my area of expertise at all. I'm a molecular virologist. I like to see sequences. I like to see bands on gels. I like to see transcriptome data and lots, lots of the data sets. This has been quite a learning experience for me and really continuing the learning experience that I've been on the last four years since I've been at NIH because it certainly is clear that's a fantastic discoveries at the basic science level in virology, immunology, cell biology, that then leads to the development of the products that we want to treat, prevent, and cure, really are not ever going to be effective if people don't want to take them.
If they don't work in a community environment, it's all very well and good to have boutique types of approaches when one is dealing perhaps with a small population or a population of people who are a small group with a certain kind of condition, but when you're talking about global pandemic, we need to have approaches that can be rolled out even in different areas that are going to really get to the goals which are to end these pandemics, whether it's HIV alone or HIV in combination with other conditions and certainly under the current environment that we're in.
I would like to thank you very, very much. I thought both of the questions fantastic. I'm so excited about the measurement session and I'm really looking forward to seeing the results and how that worked out. Also in terms of the interventions, I'm somewhat familiar with some of the large intervention trials that were completed a couple of years ago when I was at the office of the Global AIDS Coordinator and the Combination Prevention Trials were in my portfolio. The excitement, the anticipation, and certainly the whole change in the paradigm of putting together a study with those numbers of individuals, I think were absolutely paradigm-changing at the time.
I think given how much and how quickly the field moves, of course, this present a challenge but certainly, really interesting results. I'm very excited to see how these intervention, newer intervention approaches are going to work out and how we can build those data as well. I think there's a lot of urgency in what is being done right now. I think one of the drawbacks or one of the complications with the combination prevention trials that they took so long, that we really need to consider how we can get the important information we need in an accelerated but rigorous way as possible.
Thank you, again, for a fantastic and fascinating afternoon. I'm looking forward to hearing from the working groups and to the session in September. Diane, turning it over to you.
Diane: Oh, thanks, Lauren, and thanks, Greg, and Paul. This has been really great and thanks to all the participants and speakers. As I said this when we started that NIMH has prioritized stigma research for a long time. It's not necessarily my original area, although I have become a card-carrying behavioral scientist half of my time. I think what's really impressive is how far we've come and how much we've learned over the years. It's gratifying to know that some of the efforts that we have put in in the early days have been able to be built on and grow into something that's so complex, but also potentially so effective, and it's great to see how much thought has gone into it.
I really look forward. There were so many questions and the interesting questions and a lot of questions that didn't get answered. I think that there's tremendous opportunity for these working groups to really think sort through what's been going on and what's known and build again on it some more and move forward in some pretty accelerated ways.
I did want to know a couple of things when we started talking about intersectional stigma. It was still a fairly new concept to me, and how far it's come now, but some of the interacting themes of the intersecting stigma that came through at least in my simplistic view, are the intersectional of structural and lived experiences and how those can really have an impact on each other.
The intersection of community and academia, and I think that the HIV AIDS research world has really propelled the importance of community involvement in whatever we do, so that came through pretty clearly. The intersection of rigor and innovation. We want to be innovative, but we also don't want to sacrifice rigor in our innovation. I think that that really came through pretty clearly today too.
Finally, the intersection of stigma, discrimination, and resilience. Resilience is a really interesting concept, and we have so little understanding of what constitutes resilience and we're learning a lot about stigma and discrimination and I think in integrating some understanding of resilience is really important and maybe can be something to think about as we move forward in some of this research. It's been a great afternoon. I'm really grateful to everyone, I learned a lot and I look forward to hearing. I will join some of the discussions when I can, and I will definitely be there for the full readout. Thanks again everyone and have a great afternoon.
Paul: Don't hang up yet.
Diane: I'll put it back to you guys.
Paul: [chuckles] Thank you. I think that leaves Greg and I. I just want to say on behalf of Greg and Amber, the workshop planning group, I would like certainly to thank everyone for participating today. Today's discussions and presentations as provided depth and breadth to the discussions and work that we will have had of us. Both co-chairs touched on the questions that were submitted. We weren't able to get to many of the great, great questions, but what we will do at the co-chairs behest is we will make those questions, all the questions submitted today available to you within the workshop phase two session.
I would also like to thank and acknowledge our co-chairs today, and our welcoming speakers as well as our moderators and presenters for making it a truly productive and insightful day. People have been providing side comments and they have almost uniformly been really complimentary about the value of today. Check that one. No, no, I'll leave that one.
I would like to thank Kayla in particular for the pre-phase for one preparations and for keeping us running well throughout the day. I'll turn this over to Greg to touch on next steps and to adjourns for the day. Greg?
Greg: Great, thank you so much. Thank you, doctors Goodnow and Roush, and really thank you, everyone, for hanging in there with us today and for yet another full day of webinars after 2020. I so very much appreciate the moderators and presenters and speakers today, but I very much appreciate your participation in the phase two virtual workgroups. We have really top-notch facilitators, we have folks helping us out with notetaking, we have folks who have signed up to do the report out in September, and we have folks volunteering to help lead some writing. So our work is not done. We have much more to do.
Tomorrow you will be receiving a calendar invite with the first workgroup for the first call. We did our best for the folks who responded to the doodle poll to find a time that was mutually convenient for all. We really beg your patience, and if you can't join the first call, we really hope you will try to join the second or third call. We will try to limit the number of calls so that we make your time efficient.
There will be an unedited webinar link that will be available very soon, either by the end of this week or early next. So you can watch portions of the presentation. Like I said, we'll have really high-quality recordings available publicly sometime this summer. Then we'll make sure we have that you get access to the slides as you start to work with discussions. We will do our best to support these workgroups and help them run as efficiently as possible.
Again, just a huge thanks. I'm really quite thrilled and I feel like we've made it past phase one, and now we welcome phases two and three to come. With that, everybody have a really fantastic day. Be well and take good care.
Paul: We made it past phase one with joy, with joy and pleasure and edification.
Greg: That's right. That concludes our day, thank you so much. [chuckles] Take care.