Thematic analysis revealed four main themes related to HIV prevention programming and services: 1) Promote Multilevel Empowerment (Subthemes: Personal Empowerment, Relational Empowerment, and Multilevel Empowerment), 2) Create Engaging Program Content, 3) Build “Market Demand” (Subtheme: Branding), and 4) Ensure Accessibility. Detailed descriptions of each theme and related subthemes are presented in the following paragraphs and a summary of the results are depicted in Table
2.
Table 2
Summary of thematic and disconfirming case analyses
Thematic Analysis Results |
Promote Multilevel Empowerment | Personal Empowerment Relational Empowerment Multilevel Empowerment | “So, she needs education first [then] empowerment and self-esteem reinforcement … All that and prevention needs to be available.” Black woman, Raleigh |
Create Engaging Program Content | | “…Half the time somebody hands me a brochure, I’m not gonna read it. I don’t care what it’s got on it… I want something hands on.” Black woman, Raleigh |
Build “Market Demand” | Branding | [Programs need] “to make somebody’s mouth water for it.” Black woman, Bronx |
Ensure Accessibility | | “I would just make everything accessible … Because it’ll make a person come on in. Design a program with folks – to bring women in.” Black woman, Washington DC |
Disconfirming Case Analysis Results |
Address Structural Risk Factors | Reduce Poverty as a Risk Factor Employ Policy to Mandate Prevention Participation | “Most times, it’s finances, and women … take higher risks to get what has to get paid, so there [needs to be] more programs out to help them pay their bills, and feed their children, and clothe them.” Black woman, Bronx |
Expand Awareness of and Access to Prevention Resources | | “The free condoms, even though they’re free, they’re not available in every corner store. It’s not in walking distance… So I would say just, promote more condoms.” Hispanic woman, Bronx |
Increase Engagement via Pleasure Promotion | | “My point is … there should be … ways to make safe sex fun… knowing that you’re talking about your safety or whatever, maybe you find different ways to make it fun.” Hispanic woman, Bronx |
Across groups, participants discussed the need for prevention programs to focus on empowering women by providing them with the confidence and skills needed to make self-determined choices that represent their interests in safer sex. Collectively, participants suggested that such empowerment should be addressed at individual, interpersonal, and systemic levels.
Personal empowerment
Based on group discussions, programs should include strategies that empower women as individuals to ensure women have “the ability to make these choices for themselves and [for them to] know that they’re making the decision that they feel is best for them” (
Black woman, Raleigh). At the individual level, this concept was reflective of the idea that programs should teach women strategies for “building their self-esteem up [and] being confident” (
Hispanic woman, Bronx). Participants contextualized the need for individual empowerment via improvement of self-esteem by suggesting that women with lower self-esteem may be more likely to look to sex or men as a coping strategy for avoiding or mitigating negative self-perceptions. Thus, participants expressed that it is imperative for HIV prevention programs to include content focused on improving mental health and self-esteem, especially given the ability of the latter to impact sexual health decision making.
I would focus on … self-esteem, the inner woman, because at the end of the day I think that’s what drives a lot of women who are promiscuous into being promiscuous is that low self-esteem … a lot of what we feel inside and what we’re going through inside has a lot to do with … what men we choose, how often we switch sexual partners…
Black woman, Raleigh
In addition, participants explained that negative self-perceptions influence women to defer to desires of and ingratiate themselves with male partners for condomless sex, even if women desire or plan to use condoms. Explaining how low self-esteem may contribute to increased sexual risk behaviors and demonstrating the importance of addressing it in prevention, a Black woman from Atlanta simply stated that programs “… would have to include … self-esteem.” Participants believed that addressing self-esteem would make women less likely to rely on men or sex to elevate their esteem and would encourage women to recognize that their desires are just as important and valuable as those of their partners.
Relational empowerment
Implicit in participant comments on the essentiality of addressing self-esteem to reduce sexual risk behavior was an acknowledgement that risk behavior does not occur in isolation and that women must also be interpersonally empowered in order to engage in protective sexual health decision making. In this regard, participants called for programs to include strategies that empower women to address barriers to safer sex that arise with others. To promote empowerment at an interpersonal level, participants believed programs should enhance women’s sexual communication skills. Women discussed the need for programs to train women to be confident and bold when discussing safer sex with partners so that they could insist on use of protection. In one rapid focus group exchange between several women, participants explicitly stated women needed training in:
“Communication skills”; “With partners and stuff …”; “What kind of questions to ask, especially what kind of questions to ask. How to say, how to be more…”; “Assertive”; “That’s the word I was looking for! Be more assertive…”; “And more firm about it….”; “Not to offend the person.”
Five Hispanic women, Bronx
In another focus group exchange participants discussed how individual empowerment, in the form of high self-esteem and confidence, could help facilitate interpersonal empowerment in the context of sexual communication with partners. They also described how such confidence could be increased via group discussions with other women.
“Confidence, a lot of women need confidence to be able to talk about things like that with their partners.”; “Building their self-esteem up, being confident.”; “Exactly.”; “You know? Women, you know, they can just talk about it and get that boost [of confidence].”; “Yeah, from each other.”
Three Hispanic Participants, Bronx
Discussions regarding the need for programs to train women in sexual communication skills were at times contextualized with descriptions of gender imbalances that perpetuated women’s loss of power and agency in being able to negotiate safer sex with partners.
There’s so many women available and there’s so many men that’s not available. So many men incarcerated. So many men in mental facilities. So many men at war. They’re limited and [women] don’t think that they could find something maybe half as good as what they have …So they’d rather settle.
Black woman, Bronx
Participants suggested that given the low ratio of men to women and women’s subsequent loss of power, women often tolerate less than desirable relationship conditions. Focusing specifically on sexual relations, they emphasized that if a woman wants to keep a man she may be more apprehensive about having a discussion on safer sex. Moreover, if she does raise the topic, she has to be strategic in how she approaches the subject so as not to lose her partner in the process.
Because a lot of times… women [would] rather not have that uncomfortable conversation and risk getting her man upset because of that - because she wants to use the condom and he might not want to use it. So she don’t want to ruffle the feathers or whatever. So she’ll avoid it and risk it all ...
Hispanic woman, Bronx
Participants acknowledged the difficulty many women experience in trying to negotiate safer sex practices and simultaneously highlighted this as a needed area of focus for prevention programming.
In addition to being empowered in relationships with partners, women discussed the importance of being empowered to have conversations about sex with their children. As one participant stated, “Some women need to have help with how to present… those type[s] of topics and ideas to their partners … Or how to talk to their kids or their teenagers about sex and being protected …” (
Black woman, Raleigh). In many groups, women noted that parent-child sexual education needed to begin earlier in childhood given that sex is initiated at younger ages in their communities. Though many participants discussed the need to have these conversations with teenagers, numerous participants explicitly stated that they should also have “sex talks” with children in elementary school.
They say you not supposed to get sex ed until you thirteen or you in middle school but it’s kids in elementary school having sex but they not, well they think they too young to talk about it. For real, for real I think that I should have known about sex when I was in fourth grade. (Black woman, Washington DC)
Many women passionately discussed the importance of providing training for women to teach their children and other young people in their communities about HIV prevention. Participants emphasized that it was important for young people to have access to sexual health information in schools given that “abstinence only” education would be insufficient because many young people are already sexually active. “It would be nice for kids to be abstinent, but I don’t think that’s reasonable to think it’s going to happen” (Black woman, Bronx). In light of the lack of comprehensive sex education in schools, participants noted the role of parents in ensuring that their children had enough information to make protective sexual health decisions. “You can’t just depend on the school and these teacher(s) and different organizations to teach your kids. You have to teach your kids, first” (Black woman, Atlanta).
Despite the recognition that women needed training in how to speak with their children, participants also noted children may not feel comfortable coming to adults when they become sexually active or curious and that it may be challenging for parents if/when the topic is raised. As stated by one participant, “sometimes it’s embarrassing to talk to your kids. It’s very hard” (Hispanic woman, Bronx). Thus, participants suggested that programs should teach women to address barriers to these conversations and assist women with overcoming feelings of embarrassment.
Multilevel empowerment
Rather than have a program that focuses solely addressing one aspect of women’s HIV risk (e.g., behavior), participants suggested addressing risk at multiple levels via empowering programs that include traditional clinical services (e.g., HIV testing and counseling) integrated with behavioral interventions and social services. For example, one participant stated that if she were creating an HIV prevention program, she would make sure it included, “home economics, sex education, business skills ... and social services” (
Black woman, Bronx). Capturing the voices of numerous women, another participant outlined her vision of an ideal and comprehensive approach to prevention for women:
… Educational classes and help ... They … need help to finish school. They need help with childcare… helping these women with some cash and some food stamps. Help them with educational classes… give them the childcare that they need … Something … that would … have everyone feeling like they can turn there for help. Like the door is never shut or something.
Black woman, Bronx
In numerous groups, participants reinforced the need for programming to go beyond simply providing educational sexual health classes, which implied an understanding of HIV risk as multidimensional. A few participants also recognized the importance of layering prevention initiatives by first addressing women’s most pressing needs (e.g., food, shelter, financial security, and emotional wellbeing) and then moving on to more traditional approaches to HIV prevention that are interwoven with empowerment approaches. Providing an example, a Black woman from North Carolina, stated that programs should offer “regular testing [and] life planning counseling. So, she needs education first [then] empowerment and self-esteem reinforcement and testing… All that and prevention needs to be available.”
Create engaging program content
Across groups, approaches to HIV prevention were most often conceptualized as behavioral interventions. In this regard, participants discussed the need for behavioral interventions to employ participatory activities that encourage engagement. This recommendation often emerged as a disagreement in groups where a few participants initially suggested less engaging programmatic approaches such as having educational classes and distributing informational brochures. In numerous groups, participants responded to such suggestions by highlighting associated drawbacks and offered alternative approaches that could engage participants in experiential and visual learning activities to encourage knowledge acquisition and skill building. “I see what she’s saying, a brochure, but half the time somebody hands me a brochure I’m not gonna read it. I don’t care what it’s got on it… I want something hands on” (Black woman, Raleigh). Similarly, another participant stated, “If you give me a pamphlet – hey when I leave out that door everything you just said is going right in the trash versus me seeing it” (Black woman, Washington, DC).
Participants provided examples of a variety of visual and hands-on activities that programs could employ, including a) showing pictures of active STIs to incite fear and motivate engagement in prevention, b) showing videos of active STIs so that women were able to identify symptoms of infections (e.g., bumps, discharge, etc.) in themselves and their partners, c) engaging women in role play to better learn sexual communication skills, d) demonstrating condom use to ensure women know how to correctly use condoms, and e) facilitating interactions with PLWHA individuals to learn firsthand about their physical and psychological experiences with the virus.
I think I probably would have a program … [with a] demonstration of how to put a condom on. I mean, have a dildo or banana, whatever you want to use to show them the proper way of using a condom …
Black woman, Washington, DC
Participants discussed the utility of hands on engagement, emphasizing that fun activities can build women’s self-efficacy, which will allows women to take safety into their own hands rather than relying on partners. Women stated that this was especially important in the context of condom use, as condom use should not be the sole responsibility of male partners. One participant emphasized that women “… know how to use [condoms], because you don’t know – [he] may not know how to put it on, so you might just have to do it …” (Hispanic woman, Bronx). To this end, many participants stated that programs should include condom use demonstrations for both male and female condoms.
In expressing the need for more engaging programming, participants also discussed the importance of utilizing “motivational speakers [that will] encourage these women to go out here and do right, love themselves, and protect themselves” (
Black woman, North Carolina). Many participants discussed the need for women to be exposed to the unique perspectives and experiences of HIV positive individuals to learn more about how individuals contracted the virus and live with HIV.
I’m all about … motivational speakers but they would have to be HIV positive people. Because only people who don’t look like they have it, who have it, can really show other women that you can’t tell who has it or not …They need to see that… They need to see women with HIV living day to day, men with HIV living day to day, living healthy productive lives …
Black woman, Washington, DC
Overall, participants expressed that there were no viable substitutes for being exposed to the perspectives of HIV positive facilitators. “You find someone that’s dealing with it, that’s living with it… don’t bring me somebody that’s doing research, because I can do the same research you’re doing” (Black woman, Bronx).
Although they mentioned the import of being able to hear these stories, they also highlighted that programs should include more dialogue versus presentations. Participants felt that women would be more engaged if women could talk with each other and the facilitators in a guided discussion format. In the words of a Black woman from the Bronx, “You need it to be interesting. It’s serious, but it shouldn’t just be something where you’re just sitting there, and they’re doing all the talking. No, everyone talks… It’s discussion.” In addition to ensuring that groups were discussion based, participants also stated that the groups should be small and start with fun icebreakers. Participants highlighted that the discussion groups could serve as sources of support for women and could also be a safe environment where they can talk about and receive help with their experiences with sex, condom use, sexual communication with partners and kids, relationship dynamics, drug and alcohol use, family planning, and domestic violence. Despite the seriousness of these topics, women stated the need to infuse the group discussion with fun and interactive activities to maintain engagement.
Some groups are dead. Nobody wants to sit there for an hour listening to: ‘what are STDs? … Can anybody tell me how you contract HIV?’ That sounds boring. I would be sitting there going, ‘Oh. My. God. When is lunch? … What are they giving out for free? Am I getting paid for this?’ I would literally be sitting there bored to death… But they need more talk groups…livelier talk groups.
Black woman, Bronx
Through this recommendation on how interventions should be delivered, participants suggested that discussion groups would honor women’s desire to be heard and feel their opinions are valued.
Build “market demand”
Participants discussed that prevention programs needed to employ marketing strategies to ensure interest and desirability in the target audience, emphasizing that programs needed “to make somebody’s mouth water for it” (
Black woman, Bronx). Suggestions for stimulating interest in programming included employing media campaigns via targeted promotions and advertisements on television and in areas frequented by women such as restaurants, parks, bathrooms in bars, and hair salons. Relatedly, participants suggested having programs promoted by national and local celebrities. For example, a participant discussed the popularity and influence of a local radio personality and discussed how individuals with a platform and large audiences could quickly engage and attract large followings in prevention activities.
Let Big G put on a flyer ‘free admission [to the] Backyard [Band] show for HIV testing, bring your proof of HIV [testing]’. Girl you know that line [is] going to be like the Million Man March outside… Big G can come on the radio and be like ‘we got tacos and condoms’! … Let him … be like ‘HIV - that’s the new thing to do, go take a test.’ Everybody going to be in the DC area talking about ‘stick me right there’!
Black woman, Washington, DC
Participants also discussed the need for strategic incentivization as an approach for increasing market demand. Recommended incentives included food, giveaways, childcare, gift cards, cash, and vouchers for gas or public transportation. Participants also recommended including a variety of free condoms, “free HIV testing, free pap smears, [and] free medication” (
Black woman, Washington, DC). Participant responses implied a desire to see free health services co-located with HIV prevention services and programming, suggesting a desire for improved access to health care. Relatedly, during a focus group exchange in the Bronx, three Black women stated,
“As long as it’s free you will be amazed at how fast people come.”; “People will come. Offer some food with it.”; “That is so true, sweetie.”; “As long as it’s free, you’d be amazed at how fast they’d come.”
In addition to suggesting free programming, some participants recommended paying individuals to engage in prevention activities.
Oh, you’ll pay me fifty dollars! Oh, I’ll go … and everybody’s like, girl I ain’t going to go get no AIDS test …I was like they pay you fifty dollars and then everybody [was] like ‘come on let’s sign up’ …
Black woman, Atlanta
Overall, participants acknowledged the importance of having high quality intervention content but also emphasized the necessity of designing and implementing high quality marketing strategies to stimulate interest and engagement in prevention activities. “Because you got to really … get these people’s attention nowadays. You got to really have a good, good, good, good idea – to get somebody to stop what they doing” (
Black woman, Washington DC).
Branding
When participants were invited to provide their suggestions for a prevention program logo or motto, they mentioned that the visual appearance of the prevention approach was key for flyers and other branded materials. “It’s all in the presentation” (Black woman, Bronx). General discussion suggested that both the logo and the motto must be memorable, attractive, and mentally stimulating. “You need to reach their mentality [with a] little catchy slogan, you know. ‘Condoms Equal Life’ … a real message that can hit hard” (Black woman, Washington DC).
Participant dialogue suggested that marketing materials for programs, especially the logos, demonstrate unity, women, safety, and action. One participant discussed the importance of symbolizing action by stating, “It’s not even about being aware because everybody is pretty much aware now. You have to actually do it, not just say [it]” (Black woman, Bronx). Additionally, participants recommended the motto for the program to demonstrate safety, community, action, and consequences of risky sexual behavior. One participant simply said, “United we stand. That’s it” (Hispanic woman, Bronx),” expressing the importance of community being demonstrated in the motto.
Ensure accessibility
Accessibility was also stressed as a key component of prevention programming. Participants suggested several strategies to increase access to prevention while eliminating barriers to engagement such as medical mistrust, stigma associated with accessing sexual health services, lack of awareness regarding where to access prevention resources, and transportation to program sites.
I would be more down to earth… have like an outreach program also, go around with this pack [of prevention materials] … because you know people are scared, they’re afraid… They don’t want you to know … that they’re buying in the stores, … they’re embarrassed by it … So, I would like an outreach program, like when the truck come out and pass out condoms.
Black woman, Washington DC
In addition to community-based outreach, other suggestions included having community members host and facilitate programs, implementing community-based “door to door” programming, employing peer education strategies, and engaging individuals in prevention through volunteerism.
Try to involve -- I think, try to involve the community. You know, try to go out there and … see if you can get volunteers, someone to actually go out and involve themselves… try to get people to come out and recruit. ‘Hey, let’s hand out fliers!’
Hispanic woman, Bronx
Several of the community-based strategies were also highlighted as approaches that could help participants feel safe, interested, and open to participating in prevention programming.
In order to ensure the greatest possible level of engagement and accessibility, it was recommended that community members be part of the program design team. “I would just make everything accessible for nothing. You know? Because it’ll make a person come on in. Design a program with folks – to bring women in” (Black woman, Washington DC). Additionally, participants stated that combining community-based approaches with other types of approaches would be most effective in helping women engage in and access prevention programming as the target population would be repeatedly exposed to the same messages, information, and resources.