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Lived experiences of racism and intersectional stigma among Black youth living with HIV in the Deep South

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The impact of anti-Black racism on child and adolescent health is well documented. When stigma related to race is compounded with HIV-related stigma, Black youth living with HIV (YLWH) may be further disenfranchised and systematically oppressed. Tiffany Chenneville discusses the experiences, beliefs, attitudes, and perceptions of Black YLWH who reside in the Deep South, a region particularly affected by racism and the HIV epidemic

Image courtesy of interviewee. August 6, 2024

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This video text outlines a study focusing on the impact of racism and stigma on health disparities among Black youth living with HIV, particularly in the southeastern United States. It emphasizes that social determinants of health—such as socioeconomic status, access to education, and healthcare—play a significant role in health outcomes, and systemic racism can perpetuate inequities in these areas. The study also explores the concept of intersectionality, coined by Kimberly Crenshaw, which addresses how multiple, overlapping identities (e.g., race and sexual orientation) can lead to compounded stigma.

In this qualitative study, researchers aimed to understand the experiences of Black youth living with HIV regarding stigma and discrimination. They conducted semi-structured interviews with participants, employing a phenomenological approach to analyze their lived experiences. Key themes included perceptions of stigma, coping mechanisms, and the need for resources.

Findings revealed that experiences of stigma varied among individuals, influencing their responses from avoidance to advocacy. The study highlighted the importance of resilience and supportive interventions to improve HIV health outcomes and combat the negative effects of stigma. Ultimately, it calls for targeted individual and structural interventions to address the unique developmental needs of young people living with HIV and suggests policy changes to mitigate structural inequities affecting this population.

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Here are some key quotes from the video that capture its main themes and insights on racism, health disparities, stigma, and HIV, particularly as they relate to Black youth:

1. "The convideo of this particular study really is the reality that racism contributes to health disparities and poor health related quality of life."

2. "Social determinants of health is acknowledging that factors like socioeconomic status, access to quality education, access to quality healthcare, neighborhood environment, that all these factors... influence health outcomes."

3. "Institutional racism... refers to systemic patterns of discrimination and inequity that are embedded in our institutions."

4. "Access to quality healthcare and education in predominantly white communities looks very different than those in predominantly black communities."

5. "Chronic stress can contribute to things like high blood pressure, heart disease, stroke, and chronic stress is linked to mental health issues such as anxiety and depression."

6. "Substance use can be linked to risky sexual behavior... which can result in poor sexual health outcomes."

7. "Intersectionality... describes the intersection between different identities such as race, gender, and class."

8. "Anticipated stigma... can result in people avoiding healthcare settings, especially for individuals living with or at risk for HIV."

9. "Findings from this study revealed a number of moderating resilience resources that can affect this relationship between intersectional stigma and HIV disparities."

10. "These types of interventions could ultimately decrease secondary transmission of HIV."

11. "Our study supports the need for both individual and structural interventions to combat the negative impact of stigma and discrimination among black youth living with HIV."

12. "There is a need for policy changes to address some of the structural inequities."

These quotes reflect the study's exploration of the intersections of race, health, and systemic inequities, particularly as they affect the quality of life and health outcomes of Black youth in relation to HIV.

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X-TIMESTAMP-MAP:LOCAL=00:00:00.000,MPEGTS=900000

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The context of this particular study really is the

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reality that racism contributes to health disparities

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and poor health related quality of life.

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And really, the social determinants

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of health framework helps to explain this.

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So, social determinants of health is acknowledging

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that factors like socioeconomic status,

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access to quality education, access to quality, healthcare,

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neighborhood environment, that all these factors,

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and networks influence health outcomes.

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And we know that policies

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and procedures affect these factors either

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directly or indirectly.

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And so this, you know, the term institutional racism

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or structural racism is really referring to these

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systemic patterns of discrimination

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and inequity that are embedded in our institutions,

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our political institutions, our educational institutions,

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our social and economic institutions.

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And that these, equities perpetuate

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the unequal treatment and opportunities based on race.

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So we know that, for example, access

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to quality healthcare

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and education in predominantly white

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communities looks very different than those in predominantly

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black communities.

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And so this can result in higher rates of,

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preventable chronic diseases as well

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as mental health issues and, and even developmental delays.

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Um, also the context

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for this study is really focused on, stigma.

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So stigma, real or perceived can result in

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or can contribute to stress and chronic stress.

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And we know that, stress has a, an impact on health,

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again, either directly or indirectly.

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So chronic stress can contribute

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to things like high blood pressure, heart disease, stroke,

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chronic stress is linked to mental health issues such

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as anxiety and depression.

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Uh, chronic stress can exacerbate,

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other illnesses like fibromyalgia

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or irritable bowel syndrome.

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Um, and,

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and also the indirect effects are often related

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to the way that people cope with stress.

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So sometimes people will use substances to cope with stress,

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and increased use of substances is correlated

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with poor health and increases the risk of injury,

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and also can be linked to of particular relevance

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to this study, which is focused on HIV.

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Substance use can be linked to risky sexual behavior,

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meaning, you know, sex without a condom

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or sex with multiple partners, which can,

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can result in poor sexual health outcomes.

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So it's very well documented

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that HIV disproportionately affects

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marginalized communities.

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Uh, this includes sexual

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and gender, minorities, economically disadvantaged

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communities, and also racial minorities.

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So, Kimberly Crenshaw coined this term intersectionality

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decades ago.

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And, this, this term is used

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to describe the intersection

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between different identities such as race,

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gender, class.

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And so intersectional stigma stems from this term

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and from Kimberly Crenshaw's work,

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and really refers to the compounded impact of living

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with multiple stigmatized identities.

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So, for example, somebody who is black

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and living with HIV, maybe dealing with racism, racism,

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and HIV stigma, a black, gay person living

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with HIV then is dealing with racism, HIV stigma and,

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and homophobia.

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So there's a lot of research showing that

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anticipated stigma, or anticipated or perceived racism

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and discrimination within healthcare settings can result in

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people avoiding healthcare settings.

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And this is very much true for people living with

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or at risk for HIV.

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And so, if based on these experiences of stigma

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and discrimination, black youth, for example,

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are avoiding healthcare se settings, they may be less likely

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to be tested for HIV or treated for HIV.

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And, and then this becomes not only an issue

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for the individual, but it also becomes

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a public health issue.

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Because if you don't know you have HIV

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or you're not treated for HIV, when you do know it,

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then you're more likely to transmit the,

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the virus to other people.

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So another important piece of the literature that's

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of relevance to this study is Valerie Shaw, who,

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is now a, a colleague

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and another psychologist at University of Delaware.

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Uh, she developed what's called the stigma

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and HIV Disparities model.

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And so this model really looks at,

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the fundamental factors affecting this relationship between

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societal stigma and HIV disparities.

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And so, her original model kind of looked at both macro

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and micro levels.

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Um, so at the macro level,

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are things like medical mistrust,

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historical trauma at the micro level.

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So really looking at, perceived anticipated

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and internalized stigma.

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And so Shaw's model kind of proposed

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that resilience could help moderate

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HIV disparities at both the structural

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and at the individual level.

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So,

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Shaw's original model really didn't specifically take into

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account developmental factors.

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And because we were interested in, in focusing on, on stigma

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and HIV disparities among youth, my colleague,

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Kaisha Gaon, who, who works with me at the University

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of South Florida, led a revision of the model.

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So we worked together with Valerie Shaw

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and another, colleague Hunter Drake

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to integrate a developmental framework into

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this existing model to provide kind

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of a more nuanced examination of, the factors

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that might help support psychosocial

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and also biological resilience among youth living with HIV.

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So that's kind of the, the most relevant,

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research and frameworks that really kind

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of guided this study.

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So, so for this study, we were interested in assessing

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anti-black racism,

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and HIV health disparities through an intersectional lens.

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Uh, so we were interested in black youth living with HIV

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within the Southeastern United States, commonly referred

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to as the deep south.

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And this is an important location

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because the rates of HIV

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are very high in the southeastern u United States.

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Um, and also racism

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and homophobia are also very high in the

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southeastern United States.

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So we received some funding through the University

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of South Florida, through

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a rapid response research grant program

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that was really focused on understanding

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and addressing blackness and anti-black racism.

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So myself

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and my colleagues, who are listed on this paper,

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we're not all affiliated,

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but some of us are affiliated with the University

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of South Florida Pediatric

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and Adolescent Infectious Disease Program, which Essen is,

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is housed in the Department of Pediatrics at USF Health.

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And this is a integrated care program

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that is providing primarily medical services,

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but also other services such as, psychosocial support,

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psychological services, nutrition services, social work,

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peer outreach.

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So this program we serve birth to age 24.

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So children who are born with HIV and then also adolescents

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and young adults who contract HIV behaviorally.

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Typically in this program, we're seeing, youth who

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contract HIV through, sexual behavior.

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So, so we recruited from this program 10,

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black non-Hispanic youth living with HIV, who were

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between the ages of 14 to 24.

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We had set out, we had set the age range for 13 to 24.

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But, in terms of the participants

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who actually enrolled were aged 14 to 24, most

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of our participants, were men or young men

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and identified as gay.

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This was a qualitative study.

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So we were using qualitative methods to,

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to gather data about the lived experiences

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of young black youth living with HIV.

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So we conducted semi-structured interviews.

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Uh, we were doing this study,

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started the study during covid.

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So everything, all the data was conducted,

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conducted virtually or collected virtually via teams.

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So we did interviews, transcribe them,

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and then we used, qualitative content analysis,

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to analyze the data and through a phenomenological lens.

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So phenomenological approaches really focus on lived

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human experiences, to help gain an understanding

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of social phenomenon.

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And in this case,

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we were interested in intersectional stigma

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among black youth living with HIV.

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Uh, content analysis involves an iterative,

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iterative process to identify themes from the data.

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So for this study, we had a team of coders.

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And so the team reviewed segments started

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by reviewing segments of a single transcript to

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develop a preliminary outline of the coding framework.

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And this framework included categories and subcategories

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and also operational definitions and decision roles.

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Uh, and then there was a process of,

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we call it negotiated agreements.

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So the team members came together

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and kind of looked at, at what they came up with

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and decided whether or not they wanted to have any changes

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to the framework,

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and then piloted that framework on a subset

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of the transcripts to make sure the framework was usable,

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came back together, you know,

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decided did they need to make any changes.

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And, and then that's, excuse me, that's how all the, the,

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the data was analyzed.

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Um, and then throughout the process,

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the coding team would meet to kind of reflect on the aims

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of the study, make sure that the categories

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and subcategories weren't really overlapping,

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and then also to ensure what we call data saturation.

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So in qualitative research, data saturation refers to,

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the point at which no new information

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is being gained.

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Um, and, and at that point, then that's kind of an indicator

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that you have enough data.

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Uh, if you don't meet data saturation,

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then you should be collecting more data, in order

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to make sure you're,

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you're getting everything you need from the dataset.

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So we organized the results around themes

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or categories as I explained through this kind

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of qualitative analysis.

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And so we looked at the themes that,

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that we were examining, certainly stigma

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and discrimination, including intersectional stigma.

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But within that realm, we were looking at how youth

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and our sample conceptualize stigma

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and discrimination, what their experiences,

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around stigma and discrimination were,

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and then what their responses to those experiences were.

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And then we also had some themes around HIV disclosure,

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HIV knowledge, coping mechanisms and resiliency,

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and then also needs and resources.

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So we contextualize these findings within this revised

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developmental stigma and HIV disparities model.

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And in doing so, we're able to describe the association

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between HIV disparities

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and intersectional stigma through this developmental lens

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among black youth with, living with HIV.

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So, so as an example, in terms of the impact

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of development on, on the interpretation of findings,

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when we looked at how youth in our sample were

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conceptualizing stigma

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and discrimination, we found that results were varied.

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So younger youth in our sample

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had a more difficult time conceptualizing these terms

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and constructs.

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Uh, and when we're thinking about this

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through a developmental lens, that makes sense

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because of, of cognitive development, right?

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The cognitive capacities

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of younger youth versus older

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youth is going to be different.

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Uh, also the experiences they've already had are going

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to potentially be different.

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But this is important

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because the way that someone conceptualizes constructs, such

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as stigma and discrimination may influence their

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interpretation of certain experiences.

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Uh, so that was one example of kind of looking at this data

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through this developmental lens.

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Um, also, the experiences of intersectional stigma

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and discrimination varied among our small sample.

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So the youth in our sample described both physical

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and emotional responses to perceiving stigma

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and discrimination,

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and physical, I'm just talking about literally like

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how did it feel when you experience,

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these stigmatizing experiences.

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And so some of what was described was consistent with,

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documented descriptions of emotional

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and behavioral consequences of stigma

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with other populations.

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Uh, the responses to those experiences of experiences

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of stigma and discrimination, spanned from

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complete avoidance to advocacy.

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So wanting to avoid situations where they might experience,

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intersectional stigma to really being compelled

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to advocate to, ensure

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that these experiences are not occurring.

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So we, we saw a range of responses,

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findings from this study revealed a number of, of moderating

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resilience resources that can affect this relationship

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between intersectional stigma and HIV disparities.

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And so we categorize these based on the data

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as HIV disclosure, HIV knowledge, the coping mechanisms,

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and resilience, as well as needs and resources.

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So we know these categories might be interdependent

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and influence one another.

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So for example, you know, promoting resilience

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and adaptive coping through individual

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and structure, you know,

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structural interventions designed to address the needs

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of black youth living with HIV might improve

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HIV knowledge, not just for the individual,

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but for others, in that person's life

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or the community also might improve,

16:14.585 --> 16:16.205
or increase the likelihood

16:16.225 --> 16:18.765
of positive HIV disclosure experiences.

16:19.385 --> 16:21.125
And these are important factors

16:21.195 --> 16:24.925
because ultimately, again, this is a public health issue.

16:25.185 --> 16:29.165
So, ultimately the idea is

16:29.165 --> 16:30.205
that these types

16:30.205 --> 16:33.565
of interventions could ultimately decrease secondary

16:33.565 --> 16:35.245
transmission of HIV.

16:35.785 --> 16:37.885
So again, current findings from this study

16:38.445 --> 16:40.485
provided evidence of intersectional stigma

16:40.495 --> 16:42.725
among black youth living with HIV.

16:43.385 --> 16:45.085
Uh, and this is consistent

16:45.085 --> 16:49.605
with other research demonstrating intersectional stigma,

16:49.775 --> 16:53.125
among other populations living with HIV, you know,

16:54.145 --> 16:57.045
adults including adult women in the United States.

16:57.745 --> 17:01.805
But in terms of future directions, this, this finding,

17:02.635 --> 17:06.805
this study or findings from this study support the need

17:06.985 --> 17:08.285
for both individual

17:08.705 --> 17:13.405
and structural interventions to combat the negative impact

17:13.465 --> 17:14.765
of stigma and discrimination

17:14.815 --> 17:16.565
among black youth living with HIV.

17:17.145 --> 17:18.365
So individual

17:18.465 --> 17:21.445
and structural interventions designed for this population

17:22.305 --> 17:25.845
really need to take into consideration their unique

17:25.845 --> 17:29.405
developmental needs, especially considering evidence

17:29.435 --> 17:33.525
that suggests that stigma may result in poor health outcomes

17:33.735 --> 17:35.325
among youth compared to adults.

17:36.105 --> 17:40.725
Um, and this can affect, negatively future orientations

17:41.055 --> 17:44.325
among youth who are living with or affected by HIV.

17:44.425 --> 17:48.965
And, and again, this in turn can increase,

17:49.195 --> 17:52.485
risk for behaviors that will result in poor health outcomes.

17:53.225 --> 17:55.925
Uh, certainly as youth transition into adulthood

17:56.265 --> 18:00.005
and interact with new institutions and systems, right?

18:00.025 --> 18:01.085
We can think about college

18:01.225 --> 18:03.205
or trade school entering the workforce.

18:04.145 --> 18:08.525
Uh, unfortunately, exposure to stigma may increase.

18:09.385 --> 18:11.845
We know that stigma is a barrier to

18:12.415 --> 18:15.565
successful transition into adult HIV care.

18:15.955 --> 18:18.205
This has been well established in the literature.

18:18.595 --> 18:21.045
Therefore, we really need more research

18:21.145 --> 18:22.845
to evaluate interventions

18:22.955 --> 18:25.485
that take into account these factors.

18:26.305 --> 18:29.805
Uh, policy changes also are needed to address some

18:29.805 --> 18:31.525
of the structural inequities.

18:32.215 --> 18:34.965
There is a model, a scholar named Hunting,

18:35.115 --> 18:37.285
published in 2015, something called

18:37.905 --> 18:41.045
the intersectionality informed Model of Social Inclusion

18:41.145 --> 18:43.645
and Exclusion to address stigma

18:43.705 --> 18:46.445
and discrimination toward people living with mental illness

18:46.585 --> 18:48.165
and substance use disorders.

18:48.675 --> 18:52.805
This might be a good model to adopt for,

18:52.805 --> 18:54.565
young people living with HIV.

18:55.065 --> 18:59.525
Um, this model applies concepts of social isolation to

19:00.065 --> 19:01.325
social structures

19:01.385 --> 19:05.845
and context that, that affect health equity

19:06.665 --> 19:08.605
or inequity, as the case may be.

19:09.025 --> 19:12.005
Um, but this might be a useful model for thinking about how

19:12.005 --> 19:15.525
to create or modify policies that either directly

19:15.585 --> 19:20.165
or indirectly affect black youth living with HIV,

19:20.765 --> 19:22.445
particularly given

19:22.475 --> 19:26.325
that they are experiencing these intersecting stigmatized

19:26.325 --> 19:26.965
identities.

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