Reconciling Reality with Fantasy: Exploration of the Sociocultural Factors influencing HIV Transmission among Black Young Men who have Sex with Men (BYMSM) within the House Ball Community: A Chicago Study

Abstract

Studies involving the House Ball Community (HBC) have found high rates of HIV prevalence and undiagnosed HIV infection, as well as unique social and sexual network-related HIV risk and protective behaviors (Murrill et al., 2008; Sanchez et al., 2010). Efforts to understand culturally-appropriate and effective methods of HIV prevention services within the relatively understudied HBC are scarce (Phillips et al., 2011). This qualitative study, utilizing a Diffusion of Innovation Theoretical framework, aimed to explore social norms regarding HIV and accessibility of HIV prevention services within the HBC. Thirty-seven participants (16 community leaders and 21 youth) engaged in focus group discussions. Participants discussed the perceptions of HIV and stigmatization within the HBC, general and HBC-specific risk factors for HIV transmission, as well as HIV prevention needs and strategies for culturally-appropriate HIV interventions. Findings from this qualitative study highlight both the vulnerability of the HBC to HIV transmission and the corresponding support for HIV prevention interventions.

Despite recent advances in HIV prevention technologies, the prevalence of HIV infection continues to increase among young men who have sex with men (YMSM) in the United States, with Black YMSM (BYMSM) bearing a disproportionate burden of HIV infection (CDC, 2012). Furthermore, it is estimated that 59% of HIV-infected youth between 13 and 29 years of age are unaware of their HIV infection and approximately 94% of HIV-infected youth in the U.S. are not virally suppressed, conferring an increased risk for transmission amongst this age group (Zanoni & Mayer, 2014).

There are multiple factors that contribute to the rate of transmission of HIV among BYMSM, such as higher probability of being exposed to an HIV-positive partner, not knowing one’s HIV status, and having other sexually transmitted infections that may facilitate HIV transmission (Beyrer et al., 2012; Bing Bingham, & Millett, 2008; Hall et al., 2013; Millett, Flores, Peterson, & Bakeman, 2007). Reported differences in male partner types, particularly having older Black partners, may account for some of the observed racial disparity in HIV transmission among BYMSM (Bingham et al., 2003). Understanding the role of sexual partner characteristics remains an important priority towards curbing the HIV-related disparities among Black men who have sex with men (BMSM) (Tieu, Murrill, Xu, & Koblin, 2010). Hurt and colleagues (2012) demonstrated a dramatic increased risk of acquiring HIV once BYMSM entered an expansive sexual network made up of young MSM of color, suggesting the risk environment of these networks contributes to the ongoing epidemic among BYMSM. This is significant because researchers have highlighted the closed nature of these BYMSM’s sexual networks may be a result of discrimination or exclusion, which can increase the community’s HIV viral load (Young & McLeod, 2013). This also suggests that for many BYMSM their sexual networks may also overlap with their social networks.

One such social network among BYMSM is the House Ball community (HBC). The HBC is important for advancing HIV prevention efforts because of the role it plays in providing an alternative space for BYMSM who may identify as gay, bisexual, queer or transgender (Phillips, Peterson, Binson, Hidalgo, & Magnus, 2011). In addition, the HBC provides BYMSM with support for same-sex desire and identity, along with multiple forms of support for HIV prevention (Arnold & Bailey, 2009).

The HBC draws on existing traditions of Black cultural performance to create an alternative, often underground, world where members are able to partake in a glamorous and sophisticated society (Arnold & Bailey, 2009; Galindo, 2013). The community centers around competitions, or balls, which involve vogueing, theatrical performance and fashion runway categories that transcend gender and sexual identities. At the heart of the balls is the opportunity to walk in particular categories and ultimately win trophies which will build your social status within the HBC. Social status within the HBC often is manifested through a hierarchical categorization of defined labels (e.g. Icons, Legends, Stars, Statements, and Virgins) resulting from gaining recognition in particular categories or through accumulation of trophies. Within the ball community, Icons are considered the history makers, or “founders”, and are usually those that are long-standing and triumphant HBC members, the ultra-elite of the community. Legends are those that have won multiple trophies and have earned important status within the community and are considered elite. Stars are successful in winning categories and have made their name known in the HBC community. Statements are gaining recognition within a particular category and are good at winning competitions. Finally, the Virgins are the newcomers who are just beginning to compete in the community (Galindo, 2013). Aside from the standard Houses that have longstanding history within the HBC, the kiki scene is an emerging subgroup that caters to the younger population that may feel too young or inexperienced to fully participate in the HBC. These kikis still participate in the Ball scene through supporting Ball events or actively gaining vogueing skills to eventually join a House (Castillo, Palmer, Rudy, Fernandez, & ATN, 2012).

In addition to the hierarchical nature of the HBC, the Houses are named for different designer labels (i.e. House of Herrera, House of Escada) and are overseen by House Parents (usually both a House Mother and a House Father). The House Mother and/or House Father assume a parental figure for their recruited House children. Often the house parents serve as their children’s role models and provide guidance on the House and Ball community norms and rules (Castillo et al. 2012). Within the HBC such hierarchical relationships and family-like networks allow for fluid interaction between ages which fosters multi-generational mentorship, friendships and socialization. Active participation in the HBC can provide a space for celebration, bonding, and growth, without the threat of exclusion, stigmatization, verbal harassment, and acts of violence often experienced by gay and gender minority youth (Arnold & Bailey, 2008; Green, 2006; Kubicek, McNeeley, Weiss, Omni & Kipke, 2013; Phillips et al, 2011).

While originally created to provide refuge, participating in the ball competitions may also contribute to psychosocial stressors among HBC members as competition for gaining status and prestige can create tension between members of different Houses. For HBC youth, these psychosocial stressors can be compounded with the unique challenges associated with physical, cognitive, emotional and social growth that are part of normal adolescent development. Since HBC youth are often mentored into the HBC by their House parents or other role models within the HBC, their growth can be influenced by the social norms and experiences within the HBC. Thus, the fantasy world (i.e. focus on competition, gender nonconformity, and designer labels) associated with the HBC can promote positive psychosocial development (i.e. freely exploring and expressing their sexual and gender identity) or it can influence HIV risk because youth may feel pressure to conform to the existent social norms within their House or among their peers in an effort to gain social status within the HBC (Castillo et al., 2012; Green, 2006; Kubicek et al, 2013(a); Murrill et al.,2008). For example, mere membership in a House does not provide youth with the financial support to compete or attend Balls, but members may feel pressured to participate and attend the Balls. This pressure to participate may lead some HBC youth to engage in risky activities (i.e, exchange sex, stealing) to afford participating in the Balls (Castillo et al., 2012). In addition to the contextual and syndemic factors that may influence HIV transmission among BYMSM (Beyrer et al., 2012; Bing Bingham, & Millett, 2008; Hall et al., 2013; Millett, Flores, Peterson, & Bakeman, 2007), the importance placed on image and status in the HBC can make HIV/AIDS prevention work difficult because members distance themselves from the topic of HIV for fear of being stigmatized as HIV-positive (Arnold & Bailey, 2009; Green, 2006).

Existing studies of the HBC have found high prevalence of HIV and undiagnosed HIV infection among members of the community (Murrill et al., 2008; Sanchez, Finlayson, Murrill, Guilin, & Dean, 2010). For example, Murrill and colleagues (2008) found that of those who tested positive for HIV, 73% were unaware of their status. In addition, among persons who self-identified as HIV-negative or of unknown status, 10% had unprotected anal or vaginal intercourse with a known HIV-positive male partner or with a male partner of unknown status in the past 12 months (Murrill et al., 2008). Kipke and colleagues (2013) reported that, from a sample of 233 males from the Los Angeles HBC, 27% reported inconsistent condom use in the past three months, with an average of two sex partners in that same period and approximately 10% engaging in exchange sex (e.g., for money, rides, clothing, etc). Castillo and colleagues (2012) outlined some key risk factors and challenges obtained from HBC members that may perpetuate HIV risk in the HBC community, including unknown HIV status, low rates of HIV testing, sexual coercion, crime, exchanging sex for money or a place to stay, needle sharing, multiple sexual partners, age-discordant partners, and traveling to other cities for competitions. Unfortunately, efforts to understand culturally-appropriate and effective methods of HIV prevention services within the HBC are relatively scarce (Phillips et al., 2011).

One theoretical framework that can assist with understanding the complexity of HIV-related social norms and influences on individual behaviors is the Diffusion of Innovation Theory (Rogers, 2003). This theory suggests that behaviors endorsed by key leaders in a community will be adopted by community members over time provided that: 1) community members believe there is an advantage to adopting the behavior, 2) the behavior can be observed and easily executed, 3) there are existing communication channels through which the change can be disseminated, and 4) the behavior change is consistent with existing community values and can be integrated into social norms (Rogers, 2003). The current qualitative study was conducted in an effort to explore the social norms around HIV risk within the HBC and in the hopes of improving and strengthening HIV prevention services for youth in this highly vulnerable community. Specifically, this study aimed to explore perceptions of HIV risk behaviors and how HIV prevention services can be tailored to be culturally-appropriate and effective for the HBC.

METHODS

Participants

Both community leaders (e.g., house parents, gatekeepers) and youth members of the HBC were included in the study. Eligible youth participants were between the ages of 15–24, self-identified as Black, and as a member of the Chicago HBC. To participate in the community leadership focus groups, persons must have been in a leadership role within the Chicago HBC (e.g., House parent, Icon or Legend). Separate focus groups were held for community leaders and youth, and youth focus groups were separated by typical epidemiological age groupings (15–19 vs. 20–24) in order to allow for exploration of developmental differences.

Procedures

Potential participants were introduced to the research team by community partners and community advisory board members. Participants then met with a research team member to hear details of the study. If the potential participant was interested and eligible, then the participant provided written informed consent.

Each focus group was conducted in English, lasted approximately 2 hours, and took place in a private space at a community-based setting frequented by the youth and community leaders. The focus group facilitators included two Master’s level staff, as well as a clinical psychologist and a pediatrician (study investigators), all with previous experience conducting research with youth. The structure of the focus groups utilized the “Rapid Approach” formulated by Krueger & Casey (2000). Information regarding the content areas of the focus groups was recorded on flip charts to easily display participants’ comments. Audiotapes of the focus groups were transcribed verbatim. Each participant received token compensation of $40 for their participation. These procedures were approved by the Institutional Review Board at Stroger Hospital of Cook County and a waiver of parental permission was granted for youth under the age of 18 to participate in the focus groups.

Focus Group Guide

The focus group guide was created by the research team with input from practitioners who work with adolescents and young adults. The guide utilized a Diffusion of Innovation framework to explore specific behaviors and social norms that may increase HIV risk within the HBC. The guide specifically probed for perceptions of HIV in the community, barriers and facilitators to HIV prevention programming within the community, and suggested characteristics of opinion leaders from the community. Additionally, the participants were asked about issues/content areas that they think should be addressed in future interventions for BYMSM in the HBC.

Analysis

Data analysis was conducted by four members of the research team, all of whom were present during the focus group discussions. Major themes were generated by these team members based on a review and integration of data from a) focus group flip charts, b) audio-taped transcripts from participants, c) audio-taped oral summaries by moderators offered during the focus groups, and d) thematic notes taken by the assistant moderator during the focus groups. Once preliminary themes were generated, the research team met in a series of analysis meetings to review the developing concepts and themes and to develop consensus across the four analysts. Any disagreements between members on coding or preliminary themes were discussed by the members until consensus was reached on whether to merge or keep the themes separate. Disagreements were noted in the data analysis minutes and memos. The research team kept data analysis meeting minutes and memos following each meeting to track the development of concepts and themes, and to document the initial and developing ideas for the analysis. From this, the research team developed a coding structure, (i.e., a hierarchical set of constructs that account for the phenomena seen in the data) and then further developed and refined the list of codes as additional transcripts were coded and discussed. After all of the transcripts were coded and concepts examined, the research team conducted a series of member check-ins with the Community Advisory Board to verify emerging themes and analyses. These themes were catalogued using word processing and spreadsheet programs.

RESULTS

Participants

Thirty-seven participants, 16 community leaders, and 21 youth, were enrolled in the study and completed the focus group discussions. All participants identified as Black and as active members within the House and Ball community. We did not collect demographic data from community leaders. Youth participant ages ranged from 17– 24 (mean age=20.10), and were evenly split between the 17–19 year old group (n=10) and the 20–24 year old group (n=11). At least 7 houses were represented amongst the participants, while others chose to use aliases which did not identify their house affiliation.

Perceptions of HIV in the HBC

Participants were asked about HIV in the HBC. The responses from participants centered around the prevalence of HIV within their community and about the levels of stigma surrounding HIV in the HBC (see Table 1).

Table 1.

Summary of Key Themes

Themes	Sub-Themes
Perceptions of HIV in the Community	Prevalence
	Stigmatization
General Risk Factors	Condomless sexual intercourse
	Multiple sex partners
	Sexual partner type
	Exchange Sex
	Perceived Dating Exclusivity
	Substance use
Ball-specific Risk Factors	Category-specific sexual identity
	Desire for Social Status within HBC
HIV-Prevention Needs of HBC Youth	Lack of culturally-sensitive safer sex information
	Lack of access to HIV prevention technologies
	Lack of Ball-scene sensitivity in HIV program implementation
HBC Facilitators to HIV Prevention Efforts
	Increased Awareness of role models
	Utilizing culturally relevant leaders to disseminate information

Prevalence of HIV

Participants were asked to describe how they perceived HIV within the House Ball community. Overall, the perceived severity of HIV varied. Several participants reported that HIV was a serious issue in the community calling it an “epidemic” or even “hereditary” among gay people of color. Others reported that HIV was not as serious as other problems. As one youth participant stated, “It’s just like if I get it, I’ll just take my medicine…”

It’s really serious, but you’re not really seeing it. They’re not actually putting it in your face. Like, okay, this is one of our issues that we have, you know. We don’t have that. Youth, age group 20 to 24

Especially in the Ballroom scene or the gay scene, [HIV is] hereditary. Youth, age group 20 to 24

While youth acknowledged that HIV was a serious problem, the leaders from the community felt that it was not taken as seriously as it used to be. For example, they expressed concerns that young people joke about it now. The community leaders felt that HIV was a serious threat to their community. Community leaders felt that other pressing issues such as lack of jobs, societal acceptance of LGBT individuals, and other socioeconomic issues were major problems facing youth in the ball community that often prevented them from recognizing the seriousness of HIV in the community.

These kids nowadays if one catches it [HIV], just take a pill, and now the whole group’s got it… Community Leader

Someone then makes a joke that says “girl you’ve got a lot of nerve to be out in those awesome shorts walking around here with AIDS.’ Community Leader

I mean…I say it’s like murder because it’s like it goes hand in hand. Every time you look there’s someone dying. Every time you look there’s a young black man catching the HIV. Community Leader

Stigmatization

For both youth and community leaders, HIV was seen as a silent problem that no one openly discussed and was widely stigmatized. Some of the participants acknowledged that because of medical advances, HIV was not seen as threatening to one’s health. However, youth expressed that it was threatening to social status within the HBC. Many discussed that the stigmatization stemmed from the secrecy surrounding community members who were HIV-positive. Community leaders especially felt that House members did not openly discuss their HIV status which perpetuated the silence around HIV within the HBC.

It’s all negative. I don’t think you’re going to hear one positive thing come out of a Ball patron’s mouth about HIV. Youth, age group 15 to 19

All the things that…there’s not enough support for people that actually have it and the reason why is because it’s still a fear, a fear of ‘oh this is my friend. He has it but I don’t want to get it so I don’t even want to hug or kiss.’ It’s the ignorance, but at the same time you want to… A person is taught – through all the gossip and through all of whatever is taught to run away. Youth, age group 15 to 19

You should see amongst friends, when it comes to rumor spreading, you should really hear some of the girls talk about the HIV status. They break the word HIV into codes. It’s like, they say, “Girl, you cooked.” Like you’re burning, you’re baking.” Youth, age group 20 to 24

It’s a problem when I’ve got to go to three funerals a month and then they try to cover up and say… Well they have to cover up and say that the person passed from something else other than what we really know [HIV/AIDS complications]. Community Leader

General Risk Factors for HIV among BYMSM

Participants were asked about the types of sexual behaviors related to HIV transmission within the HBC. Participants discussed condomless sexual intercourse, having multiple sexual partners, sexual partner types, exchange sex, substance use, and perceived dating exclusivity behaviors that put the community at risk for HIV.

Condomless Sexual Intercourse

Many youth participants stated that while many of the ball kids were “pro-condom”, there were still many factors influencing why condoms were not always used. Lack of condom use was attributed to prevention fatigue and lack of knowledge about proper use. In general, participants acknowledged experiencing “prevention fatigue” and some of the youth stated that they don’t pay attention to HIV prevention messages anymore. In contrast, community leaders speculated that condomless sexual intercourse occurred more frequently among this generation of youth and appeared to be more of a cultural norm among the youth.

I think a lot of people is pro-condom now. Like in the 2010 year I think everybody…like not everybody, but I think most especially Ballroom people use condoms. Youth, age group 15 to 19

They know to wrap it up. They are not wrapping it up. Youth, age group 20 to 24

Yeah, they are very out. I don’t know what’s going on nowadays but these kids is freaky. It’s just like they’ll just be so ready to have sex all the time. It will be anywhere you’re at. They won’t have no condoms. You know what I’m saying? Community Leader

And I think that what’s wrong with a lot of ballroom kids these days is they lack that self-esteem and then they lash out and I guess their way of lashing out is having unprotected sex. Community Leader

Multiple Sexual Partners

In addition to condomless sexual intercourse, participants reported that youth within the HBC commonly engaged in sex with multiple partners from both within the HBC and from community at large. This may be attributed to peer pressure, dealing with psychosocial issues, or as a result of the perceived norms stemming from the larger GBT scene.

I think that in the gay community period a lot of things are…when it comes to having sex, because when sex is introduced and I think being promiscuous is more glamorized and it’s funny because when you find out that somebody has HIV from that promiscuousness it’s like they look at them a different way, but at the same time you’re glamorizing the situation. Youth, age group 15 to 19

So it is like denial and that hiding that keep you in risky behaviors, having sex in parks, going on Belmont, hooking up in clubs, hooking up at friends’ houses where you don’t have the space, time or opportunity to do the things that you need to do: clean yourself, make sure you have lube, condoms. Youth, age group 20 to 24

They don’t even want them, but they want to go five minutes later and do what they do – they’ll just be so horny I just don’t understand. It’s just sex sex sex sex sex. I guess the drugs play a part in it and make them like that, but I don’t know. You can’t tell them nothing. They all want to be grown at a young age. 16 years old they want to be grown. Community Leader

Partner Type

Many of the youth participants stated they would not use condoms with their primary partner. However, the community leaders felt that youth became involved in relationships too quickly with people they hardly know. When considering youth relationships, one community member stated, “Ya’ll don’t even know each other. Ya’ll are too young”. This was seen as problematic by community leaders primarily because the constant progression and dissolution of the relationships exposed youth to HIV infection. This was particularly common with youth meeting people online and establishing relationship rapidly.

When you’re in love and care about that person at the end of the day you’re willing to do anything for that person. Youth, age group 20 to 24

I’m not trying to say… but if there is anybody in the world that you should have unprotected sex with it should be your lover. Youth, age group 20 to 24

They are just thinking let’s make this happen. These microwave relationships…I just met you on Facebook today, so tomorrow I’m going to change my status to a new relationship. Community Leader

Exchange Sex

There was a general consensus from participants that many youth in the community lacked the socio-economic resources necessary to fulfill their basic needs. For many youth, their sexual orientation or gender identity left them without access to stable housing, viable job opportunities, or spending money. Thus, many youth engaged in sex in exchange for these types of resources. Participants also reported that sex exchange patrons would offer more money for sex without condoms.

They [Trans youth] don’t know how to go about getting a job. They escort. Community Leader

And other thing is pornography, the sex trade that’s going on in the ballroom community or the gay community, people who prostitute or escort or whatever you want to call it. Community Leader

Substance Use

Participants reported frequent use of substances among youth in general and within the House Ball community specifically. Some participants reported that having sex while under the influence allowed for disinhibition, which could result in higher sexual risk. A few participants reported that substances such as alcohol and marijuana were often used prior to ball competitions to ease performance anxiety, while cocaine or crystal meth may be used to promote endurance.

So it’s like I’m go to go buy a gallon and I’m going to drink it then I’m going to the party and I’m going to buy more liquor and I’m take this person home and I’m going to do this with this person. And some people in that state of mind instead of being drunk they 9 times out of 10 don’t give a damn about protection. Youth, age group 15 to 19

People use them but at the Ballroom scene they will get full and drunk and high and they’ll just be ready, so once they’re ready they don’t care no more so they go out the backdoors, go wherever and do them. Youth, age group 15 to 19

House Ball Specific Risk Factors for HIV among BYMSM

In addition to discussing the general HIV-related risk factors for youth, focus group participants also discussed the dynamics within the House Ball community that may contribute HIV risk. Specifically, participants discussed the role of category-specific sexualization, the desire for acceptance and the desire for achieving status within the HBC.

Category-Specific Sexualization

Another theme that emerged was the behavioral characteristics attributed to specific Ball competition categories. Study participants stated that competitors in certain categories (e.g. sex siren) are often more sought after because of they are perceived as more sexually attractive.

Like now my category is sex siren. Before I was walking up in pumps. Now I get ass out the backdoor. You know what I’m saying? I’m being just real. Youth, age group 20 to 24

I’ll explain more why she may feel that way, because Balls usually…if you’re not sexy hot or like when you first hit the runway it’s not like oh who is that – it’s harder for you to get accepted by the Ballroom scene. Youth, age group 15 to 19

I used to be a Ballhead because I was so young and I was so hot and I knew I was going to always win when I step out. Youth, age group 20 to 24

Now when you’re realness, the gay boys, and I’m not saying nothing about bottoms or tops, I don’t know what these people are. But when you are a masculine category in the Ball scene, you get life. Youth, age group 20 to 24

Seeking Acceptance

For many sexual and gender minority youth who have already experienced rejection from their families and communities of origin, the pressure to fit in within the House Ball community is strong. In order to be accepted, young people may engage in risky activities as a way to be part of the group. While participants acknowledged that not all Houses promoted promiscuity, some reported that in order to fit in with particular Houses, youth may have to engage in sexual acts or promote a promiscuous identity.

So when younger people come into it, they look for acceptance, so when a young mind is looking for acceptance in that type of society it will just be like I’m going to do whatever to get where she at…Youth, age group 15 to 19

Also in this community the feel to fit in, like you want to fit in. You want to fit in with this person, you want to fit in with this group, you want to fit in with this person, so you’re going to do whatever it takes to fit in. So if it’s to sleep with this person, sleep with that person that’s what a lot of people are going to do just so they can fit in. Community Leader

Achieving Status

The desire for obtaining social status within the House Ball community was frequently reported to be a risk factor as youth are drawn towards obtaining the prominent status titles within the community (e.g. icons, legends). Participants reported that obtaining status ensures one’s place within the HBC. Community leaders acknowledged that within the HBC there are some, albeit not all, older HBC leaders who coerce or use their status to promote youth in exchange for or as a result of a sexual relationship.

It depends. Like sometimes this could be a [judges] panel right here and he can be walking, but I’m going to chop him because he didn’t want to have sex with me. Youth, age group 15 to 19

Back to what you said it’s just a fantasy world, it really is. It’s just like a whole fantasy. Like if you sleep with this person you’re going to be the Queen Bee of your city or your house or whatever, if you sleep with this girl you’re going to get in the house. Community Leader

What happens a lot of times to boost your social status a lot of people would sleep with certain people. The ball scene is broken down to status – you have a star, then there’s a legend and then there’s an icon. And so you have a lot of stars…you might see a star with the same icon dating…that’s the flavor of the week and it’s like ‘oh that’s someone else’s little boyfriend’ and he is getting attention to help boost his name and he’s sleeping with this person, and at the same time he’s not ruining the reputation that the icon has or that legend has and that legend or icon might be infected or might be a drug addict or might be an alcoholic and then they are passing it on to this star who is just entering the scene. Community Leader

HIV-Prevention Needs of the HBC

HIV Testing

Participants acknowledged that HIV testing programs were widely available but the programming was not always perceived as sensitive to the needs and culture of the House Ball community. For example, both community leaders and youth felt that offering HIV testing at balls was not a sensitive approach because of the lack of privacy and the emotional impact of receiving an HIV-positive diagnosis in a public place. Furthermore, community leaders reported their perception that testing programs were just brought to the community as a way for agencies to meet their quotas.

If I went to a Ball and they told me I was cooked [had HIV], I just wasted $30. Youth, age group 20 to 24

Yes, I know 100 people tested easily, but the point is the agencies and the programs and the grant holders and stakeholders have enough sense to see things clearly of who really needs this investment. We can’t do it on our own. Community Leader

Where it’s not just you give me $1,000 to get people come and get tested, but actually covering overhead…to do something on a weekly basis that could implement behavioral development classes. Community Leader

HIV Prevention Education

Participants talked about the lack of age-appropriate and community-sensitive HIV education. Some youth felt that HIV education at a ball “was a waste of time” and “I don’t want to talk about HIV at a Ball. I don’t want to get tested at a Ball.” Community leaders also reported that condoms were often available and distributed without education about proper and correct use. Conversely, the youth participants felt that access to condoms was limited. All participants agreed that there are no other messages beyond “Pro-Condom” being promoted within the HBC.

But how often do we see people that have HIV look bad? They just don’t. It’s not 1980 no more. It’s not. And then once you get on your meds, please, no lies to the sex siren boys. Once these kids get on them meds, they bodies poof up like so big. It looks so raw. Like it works. So then you really not thinking, “Oh, this person.” You’re like, “He walks sex siren. He walk body. He walk realness. So he went to the gym.” So once those meds get in your system and kick you back up, it is no looking bad. You can’t show a picture of somebody that look bad, like, “Oh, they have HIV,” because that’s not what HIV look like. Like my main focus that I’ve always been saying, HIV is sexy. If it wasn’t everybody wouldn’t have it. Youth, age group 20 to 24

There’s a difference from talking about it and talking down on a person and educating them. When you educate a person, a person don’t feel self-conscious. A person doesn’t get scared about it. You’re educated. Youth, age group 15 to 19

We tried handing them (condoms) out; we tried putting them on the table. It depends on where you go. There’s places outside people do it. There is no better way to do it. What you want to do, mail it to your house? Community Leader

Make it exciting. Sex don’t always have to be sex you know. To me personally… Some people are not comfortable with that. Sex could be mutual masturbation; some people like to watch people jack-off. Really. They just want you in the room with them when they may just want to kiss and touch you. I don’t think that’s a very risky behavior. Community Leader

Suggested Approaches to HIV Prevention

Both community leader and youth participants discussed different approaches to HIV prevention that may be useful within the HBC. In particular, participants discussed the importance of utilizing the existing traditions and the structure of the community to achieve maximal impact of prevention programming.

Utilizing Existing Structures

Participants reported that House Parents and House leaders play an important role in setting social norms within the community. They acknowledged that while some House Parents and leaders have perpetuated the negative social norms within the HBC, there are many House Parents and leaders that have strived to promote and serve as role models for positive social norms. Furthermore, many felt that education, training and support for positive social norms were sorely needed and having these available would encourage other House Parents and leaders to participate. Many felt that having parents and leaders involved in prevention programming not only ensures culturally-relevancy but also promotes buy-in from younger members of the community.

The main thing you need to focus on is trying to find people that you can work with that’s going to be reliable to you and is going to actively walk in the Ball scenes, walk Balls. Even if you have to like – even if the incentive for this person to do it is say, “Hey, I’ll pay for you to go to the Ball, $30.00. I’ll give you $30.00 to go to the Ball, even if you walk. What you do is you talk to people. You get them engaged.” And it builds a leadership. And those people can get other people to do stuff. Youth, age group 20 to 24

I think the house parents, the house leaders should just say ‘we are all going to get tested.” Community Leader

As far as like what’s not working I think just trying to have people go that’s what’s not working. Having people who are not familiar with the scene come in and just to do stuff. Having someone who is not ball-related…you’re not going to get the outcome because we don’t even know who you are. Nobody is going to support it. Community Leader

Empowerment and Support

Participants reiterated that the HBC serves as a source of familial and social support for many youth that have been rejected from their homes or communities of origin. Community leaders emphasized that their role within the HBC is to promote positive growth, provide social support to these youth, and guide them in a positive direction. Participants suggested focusing on these positive aspects of the HBC will improve the relevance of HIV prevention interventions.

When I went into the ball scene I was an only child for about 9½ years so discovering I was gay was also a big issue and so I was like who the fuck am I going to talk to you know. I just happened to meet someone who happened to be we’ve been best friends for over ten years and we started to cross and going to ball and it was like okay, and so we started hanging with ball kids and the people who embraced us and this is people that I knew because it was a hangout. Community Leader

And then I’ve been in houses where it’s all about they want a support…a family-like system, people to talk to a daily basis, people to hang out with and that’s the reason I went into the ball scene. Community Leader

I’ve had some of the kids staying at my house say ‘I really appreciate that you know’ because we used to always cook on the weekends and they would say my mom never did that. You know that made me feel good and it’s like he was just like a little boy, and it varies from kid to kid you know. Some kids love little things, some people need the big things that we can’t supply, so I would say it depends on the person. It’s not the house, depending on your needs because some people might need a lot and some people might just need a little bit. Community Leader

And that’s the thing, the Ballroom scene is not real. It doesn’t provide anything for you. It’s an extracurricular activity. But it’s the only world that a lot of young, gay black and Latino men are accepted. They feel loved. They get positions. They get status. Youth, age group 20 to 24

HIV Stigma Reduction

Participants reported that addressing HIV stigma was critical for intervention success. The most common suggestion from participants was to have more role models within the community openly discuss HIV. For example, many reported that they could name national “Icons” who were openly living with HIV, but few could name anyone locally. Having local HIV-positive role models would help dispel rumors and in turn de-stigmatize HIV within the HBC.

I feel like they should have more people in the Ballroom actively participating and even more like house mothers, house fathers have them participate in prevention. I think that would definitely be effective. Youth, age group 20 to 24

But I think there needs to be more faces of ballroom personalities who are positive to come out and say, “Hey, “name of local Icon” did it.” We need people to just stand up so we can put a face with this. I’m talking about in Chicago. Community Leader

DISCUSSION

Findings from this qualitative study highlight both the vulnerability of the HBC to HIV transmission and the corresponding support for HIV prevention interventions. Data from the study allow us to gain a better sense of the HBC members’ perceptions of HIV and the perceived risks associated with HIV infection among this group. These findings are consistent with recent research within this community (Arnold & Bailey, 2009; Kubicek et al., 2013 (a); Kubicek et al., 2013 (b)). The data reveal a multitude of sexual risk behaviors that BYMSM in this community engage in to gain acceptance and obtain social status as well as the role of fantasy in influencing safer sex decision making (Castillo et al., 2012; Kipke et al., 2013; Phillips, et al., 2011). The risks associated with the desire to obtain status within the HBC and the role of fantasy suggests that social norms within the HBC influence sexual risk behavior (Kubicek et al., 2013(a). Further, participants’ assumptions about specific Ball categories (i.e. sex siren or pretty boi realness) seem to indicate tension between glorification of sexually desirability and level of skill necessary to obtain status (Kubicek et al., 2013(a)). Some of the study participants felt that sexually desired individuals did not need to have skills in order to gain status. However, they also recognized that these youth are at elevated risk of having multiple sexual partners. In addition, there was significant discontent with some of these social norms, suggesting that HBC members were open to and working towards changing these negative social norms within HBC.

Implications for HIV prevention

Barriers

Our findings suggest two primary barriers to HIV prevention among HBC BYMSM. First, negative socio-cultural beliefs about HIV are still prevalent within this group. Second, misconceptions regarding HIV and sexual transmission risk interfere with safer sex decision making. Socio-economic issues such as homelessness, GBT-related stigma and discrimination, and lack of economic opportunity further complicate these potential HIV barriers, particularly in this tight-knit community. BYMSM who believe that condoms are the only way to reduce one’s risk of HIV may be less likely to be tested for HIV if they believe that they are practicing safe sex. These findings suggest that comprehensive and holistic approaches to HIV prevention, including discussion of the expanding HIV prevention toolbox, must also include a comprehensive approach to healthy adolescent development within a socioecological context to allow for responsiveness to the individual’s needs, while incorporating the community’s assets.

The interaction of these barriers affect BYMSM who are part of the HBC because they are placed in difficult situations where age and physical features place them at heightened risk. In particular, House Parents have an important role of influencing sexual behaviors of the youth within their Houses. Previous research indicated that biological families play an important role in healthy development and in psychopathology (Bouris et al., 2010). As many of these youth reported seeking the HBC as a place fostering acceptance and a family-like structure, one would need to explore what roles and opportunities these chosen families have in the healthy development of YMSM. While the role of chosen families and HIV prevention has not been studied extensively, it would be useful to acknowledge the dynamics of these parent-child relationships within the HBC to explore how these influence sexual health development. For example, divergent House parent-child values can hinder trust between BYMSM and House Parents, and limit genuine House parent-child communication about HIV, private and confidential HIV testing and HIV linkage to care. In contrast, having open communication with House Parents can minimize youths’ fears regarding HIV and build trusting relationships with their House Parents regarding sex and acceptance of HIV testing and HIV diagnosis.

Opportunities

Our findings also provide insight into opportunities to improve HIV prevention among BYMSM in the HBC. First, practitioners and researchers should work to develop productive partnerships with House-Parents and HBC Leaders based on trust and mutual respect. These partnerships can facilitate appropriate and sensitive HIV testing within the HBC. The participants highlighted the influential role of House-Parents and Ball Leaders as it related to dispelling HIV stigma in the community. Participants also discussed how these House Parents and Ball leaders influenced safer sex decision making. Thus, the interpersonal component of providers-House Parents and Ball Leaders is critical for engagement of BYMSM in HIV-related services and receptiveness to HIV prevention methodologies.

Second, practitioners can work with HBC to assess HIV knowledge and values regarding HIV transmission, HIV prevention methodologies and HIV treatment. Practitioners can conduct brief initial assessments of BYMSM’s general knowledge of HIV and HIV prevention methodologies. Understanding both HIV risk factors and HIV prevention tools is crucial first step to reduce miscommunication and improve relationships in practitioner settings. To engage in culturally sensitive communication, practitioners must understand each individual within their socio-cultural context. Assumptions based on exposure to Pro-Condom messaging can be problematic. As many youth acknowledged being exposed to pro-condom messages, HBC leaders acknowledged that many youth did not have the skills to properly use a condom or the ability to negotiate condom usage. The ability of practitioners to facilitate actions that take into account these challenges and are congruent with BYMSM’s values is necessary. This is consistent with previous research that highlights the need for a community-participatory action research approach for working with this community (Castillo et al., 2012; Kubicek et al., 2013 (a); Young & McLeod, 2013).

Finally, practitioners can work with an extended network of community-based organizations that are already closely tied to the HBC. For example, some prominent community leaders within the HBC have opened schools housed in community-based organizations or private rented spaces that are dedicated to teaching skills related to Ball competitions including “Vogueing” and promotion of Ball-specific principles. Practitioners can work with leaders from these schools to promote clear, consistent, and accurate information about HIV, HIV testing and HIV treatment. These schools and community-based organizations have the unique ability to develop and implement frontline, community-relevant HIV/AIDS health education and programming in partnership with practitioners. Respected community partnerships with direct experience with HBC may also serve as trusted information liaisons.

Limitations

This study has several limitations. Although the sample was fairly diverse in terms of age, we were limited by the recruitment methodology to be able to capture key demographic variables that can contribute to differences in perceptions of risk by HBC participants. For instance, we did not collect in-depth demographic information from participants thus, we were not able to compare themes across different subgroups of the population (transgender, gay-identified, etc), nor were specific subgroups adequately represented (e.g. younger adolescents in the 15 to 16 age range).

General limitations related to qualitative research approaches also apply. Our findings provide important and unique insights into this population; however, they are not generalizable to all BYMSM. The goal here was to better understand the HBC-affiliated youth, particularly with the goal of understanding those factors that influence HIV risk within the HBC. This risk-focused emphasis was also a limitation of the semi-structure interview guide developed specifically to inform the intervention for youth in HBC. Our findings may help generate additional insights or hypotheses about HIV risk in a close-knit community that can be tested using quantitative approaches and may be extrapolated to the appropriate BYMSM population.

CONCLUSIONS

Understanding the HIV-related risk dynamics within the HBC is important insight for developing culturally sensitive and relevant HIV prevention efforts. Involving existing structures within the HBC allows for the development of trusted and meaningful relationships. This serves as a critical step for disseminating HIV knowledge, reducing HIV stigma, promoting HIV testing, and providing linkage to care. By partnering with HBC House-Parents and Ball Leaders, practitioners can gain a better sense of current gaps in HIV/AIDS knowledge, develop appropriate messaging and help minimize barriers for BYMSM to access HIV testing, linkage and treatment. These findings provide insight for practitioners working with BYMSM in this context to eliminate HIV transmission BYMSM in the HBC.