Leveraging Social Networks and Technology for HIV Prevention and Treatment with Transgender Women

Abstract

Transgender women (“trans women”) are disproportionately impacted by HIV; yet there are few interventions tailored for trans women. This study employed qualitative methods to better understand how trans women’s social networks and technology-based networking platforms may be leveraged in developing health promotion strategies for this high-priority population. Qualitative data from five focus groups (N=39) revealed three key themes: (1) Social network structure and composition; (2) Technology use patterns; and, (3) Accessing transgender health resources online. Participants used technology to establish affiliation with other trans women, build networks of support and exchange health information and advice. Policymakers and practitioners can invest in the knowledge and expertise of trans women in using technology to organize health resources and support the development of peer-led, technology-based HIV prevention and care interventions.

Introduction

The odds of being HIV-positive are estimated to be over 34 times higher for transgender women (hereafter referred to “trans women”) compared to the prevalence rate in the general U.S. population (Baral et al., 2013). In a 2012 report, Los Angeles County estimated that there were 7,214 trans women living in the County (with a range of 3,607 to 10,821 based on the definition of “transgender,”) and an estimated HIV prevalence rate of 15% (Bingham & Carlos-Henderson, 2012). A recent study in Los Angeles County among trans women recruited from community-based agencies and street- and venue-based outreach demonstrated an increase in self-reported HIV prevalence from 28% in 1998–1999 to 35% in 2015–2016 (C. J. Reback, Clark, Holloway, & Fletcher, 2018). Rates of unidentified HIV infection are also thought to be sharply elevated among trans women nationally, impacting the health of trans women who do not know they are HIV-positive and therefore have not received necessary or adequate medical care and may unknowingly transmit the virus to others (Herbst et al., 2008).

Over the past two decades, there has been increasing interest in how social networks (groups of individuals who are interconnected through personal relationships) may influence health behaviors (Christakis & Fowler, 2008). Network structure (e.g., size, density) and composition (e.g., types of social ties – family, friends) have been linked to health behaviors among various groups (Christakis & Fowler, 2009; Valente, 2010). Researchers have shown how trans women use the Internet to develop online communities (Rosser, Oakes, Bockting, & Miner, 2007; Shapiro, 2004) and social networking sites (SNS) such as Facebook, Twitter, and Instagram, as well as other technology (tech)-based networking platforms, like text messages or chat rooms (hereafter referred to as “SNS/tech”), to seek affiliation with other trans people and develop social support structures (Green-Hamann & Sherblom, 2013; Shapiro, 2004). SNS/tech is also a crucial medium for exchanging health information among trans women (Pinto, Melendez, & Spector, 2008) and for navigating work in the sex trade (Collumbien et al., 2009; C. J. Reback, Clark, Fletcher, & Holloway, 2019; Reisner et al., 2009).

HIV prevention interventions informed by social network dynamics have been efficacious when tailored for men who have sex with men (MSM; (Amirkhanian, Kelly, Kabakchieva, McAuliffe, & Vassileva, 2003; Kelly, 2004) and injection drug users (IDUs; (Latkin et al., 2009). However, it is unknown if existing social network interventions are appropriate for trans women who express different needs and risk profiles than MSM (Bowers, Branson, Fletcher, & Reback, 2012; Rohde Bowers, Branson, Fletcher, & Reback, 2011). Furthermore, trans people navigate distinct barriers when accessing health information and health care, including verbal harassment, being denied treatment due to their trans identity, fear and anticipation of trans-related discrimination, lack of service provider knowledge, and inability to afford services (Jaffee, Shires, & Stroumsa, 2016; James et al., 2016). Given the use of online networks and SNS/tech for health promotion, HIV prevention strategies that leverage peer social networks and SNS/tech may be effective in stemming HIV transmission and promoting access to care. A greater understanding of trans women’s social networks and SNS/tech use can make an important contribution to the successful development of such efforts.

The present study aims to better understand the social networks and SNS/tech use patterns of trans women in Los Angeles. The study was guided by the following research questions: (1) What are the structure and composition of social networks among trans women in Los Angeles? (2) What are the technology use patterns among trans women and how do these technology use patterns impact the formation and maintenance of trans women’s social networks? (3) How do trans women use or not use technology to access health resources? (4) How might technology be leveraged to improve the health and wellness of trans women, especially in relation to HIV prevention and care? Through qualitative inquiry the following themes emerged: (1) Social network structure and composition; (2) Technology use patterns; and, (3) Accessing transgender health resources online.

Methods

Participants and Procedures

Between January and February 2015, five focus groups were conducted with trans women at a community research site. Potential participants were recruited from community-based organizations (CBOs), through street- and venue-based outreach and word-of-mouth (N=39). Potential participants were deemed eligible for participation if they identified as a trans woman; were assigned male at birth (on their original birth certificate); were at least 18 years of age; and either used alcohol (any amount), or used an illicit substance (including not-medically prescribed marijuana) or had condomless anal sex in the past 12 months. Four of the focus groups were comprised of community members and consumers of social services (n=31), and one of the focus groups was comprised of trans women service providers (n=8).

Each focus group lasted approximately 60 minutes and was audio recorded. The community participants earned $25 USD for their participation at the conclusion of the focus group; the service providers’ focus group was held during work hours, as such additional compensation was not possible. Consistent with the principles and praxis underpinning community-based participatory research (CBPR) and participatory action research (PAR) approaches, several of these service providers were consulted during the development of the study and provided crucial input to the research team throughout the research process (Askins & Pain, 2011; Cahill, 2004, 2007a, 2007b; Kindon, Pain, & Kesby, 2007). For example, service providers gave key insights on the topic areas for exploration and framing of semi-structured interview guide questions (see Table 1). The study was approved by the Friends Research Institute IRB and the University of California, Los Angeles North Campus IRB.

Table 1.

Semi-structured focus group interview guide

Social Network Composition

1. Who do transwomen talk with, hang out with or connect with in a typical month (prompts may include: transwomen friends, non-trans friends, family, partners, hook-ups, clients, case workers, doctors)?

2. Are there nicknames or code names for any of the people that transwomen talk with, hangout with or connect with in a typical month (prompts may include: sugar daddies, johns)?

3. Who do transwomen get support from? We’re referring to both financial and emotional support here (prompts may include: transwomen friends, non-trans friends, current family, family of origin, roommates, case workers, partners)?

4. When transwomen have health issues that they need to address (i.e. STI/HIV testing) who do they typcially turn to for advice and information (prompts may include: transwomen friends, non-trans friends, current family, family of origin, roommates, case workers, partners)?

5. Some transwomen use alcohol and/or drugs. Who do transwomen typically use alcohol and drugs with (prompts may include: transwomen friends, non-trans friends, clients)? Where do transwomen find other people to drink and use drugs with?

6. Some transwomen purchase or trade hormones or prescription medications to enhance gender identity (i.e., collagen injections). Who in transwomens’ networks help transwomen access hormones or prescription medications to enhance gender identity(prompts may include: transwomen friends, non-trans friends, current family, family of origin, roommates, case workers, partners)?

7. Would you say that most people in transwomen’s social networks know one another or know of one another? Who knows everyone? Who knows nobody?

Using Technology for Socialization and Partner Seeking

1. Which types of technology are most popular for connecting with other transwomen, friends and family?

2. Some people use technology for dating. Which types of technology are most popular with transwomen who want to meet romantic partners for dating? How many of you have heard of this? Does anyone have an example to share from someone you know?

3. Some people use technology to find casual sexual partners. Which types of technology are most popular with transwomen who want to meet sexual partners for casual sex? How many of you have heard of this? Does anyone have an example to share from someone you know?

4. Some people use technology to find clients who will pay for sex. Which types of technology are most popular with transwomen who want to meet sexual partners for sex work? How many of you have heard of this? Does anyone have an example to share from someone you know?

5. When transwomen meet sexual partners, what makes it easy or difficult to engage in safer sex with these partners (example: use condoms)? Is this ever addressed prior to meeting in person? How do transwomen keep themselves safe during sexual encounters?

Health Information Seeking

1. Do any of the transwomen you know use technology to find out about transgender health issues (e.g., puberty blockers for younger transwomen, hormones, surgeries)? Are there particular websites used to get this information?

2. What types of technologies do transwomen use to find health information currently (prompts may include: websites, apps)? What kinds of health information are most often sought (prompts may include: where to get hormones, where to get a HIV test)?

3. What types of technologies do transwomen use to find mental health information? What kinds of mental health information are most often sought (prompts may include: counseling, peer support groups, spiritual resources)?

Closure.

1. Does anyone have anything to add?

2. Is there anything we’ve missed that you think we should know?

Measures

Prior to the focus groups, a brief assessment was administered to each participant to obtain demographic, sociodemographic and technology use data (i.e., age; race/ethnicity; sexual identity; HIV status; educational attainment; living situation; main source of income; and frequency of using SNS/tech). During the focus groups, open-ended questions focused on social network composition, and the use of technology for socialization, partner seeking, and health information.

Data Analysis

Audio recordings of the focus groups were transcribed verbatim for analysis by an independent agency. Transcripts were then analyzed using a methodology of “coding consensus, co-occurrence, and comparison” (Willms et al., 1990). This methodology relies on iterative coding of focus group transcripts using a priori and emergent codes and team meetings to refine analytic concepts and establish interrater reliability. Specifically, the research team reviewed an initial sample of focus group transcripts to identify key themes via in vivo coding, which formed the basis of a formal codebook. The codebook was refined after an iterative coding process and, once finalized, two members of the research team were responsible for coding the interviews separately.

Communication between research team members took place after formal coding of all focus groups, for which we used ATLAS.ti 8 textual analysis software (“ATLAS.ti 8 [Computer software],” 2017). When inconsistencies between coders occurred, a third member of the research team was consulted to discuss and help resolve any inconsistencies. Segments of text ranging from a phrase to several paragraphs were assigned codes based on a priori definitions (i.e., from the interview guide) or emergent themes (also known as open coding). We used an audit trail of decisions and team consensus building around codes, concepts and major themes in order to achieve consistency and reduce bias (Sweeney, Greenwood, Williams, Wykes, & Rose, 2013).

Results

Qualitative data from five focus groups (N=39) revealed three key themes: (1) Social network structure and composition; (2) Technology use patterns; and, (3) Accessing transgender health resources online (described in detail below).

Characteristics of Participants

Participants were racially and ethnically diverse with the majority (74.4%) identifying as Black/African-American and Latina/Hispanic/Chicana. Ages ranged from 20 to 72, with a mean age of 37 (SD = 11.90) years. Over two-thirds (69.2%) reported their sexual identity as heterosexual, while others identified as bisexual (7.7%), lesbian (2.6%), gay (2.6%), or did not answer 18.0%. One-third of participants (33.3%) reported living with HIV. Slightly over half reported a high school diploma/GED or less as their highest level of educational attainment. Three-quarters (74.3%) earned less than $12,000 annually, with only two (5.1%) participants earning more than $36,000 annually. Main sources of income included part- or full-time employment (41.0%), SSI/SSDI (28.2%), and sex work (18.0%). Nearly one-fifth (18.0%) were experiencing homelessness or were marginally housed. Complete sociodemographic characteristics of the sample are presented in Table 2.

Table 2.

Sociodemographic characteristics (N=39)

Sociodemographics	% (n) or Mean (SD)
Age (years)	36.5 (11.9)
Race/Ethnicity
African American/Black	28.2 (11)
Latina/Hispanic//Chicana	28.2 (11)
Caucasian/White	25.6 (10)
Asian /Asian American/Pacific Islander	5.1 (2)
Native American / Alaskan Native	2.6 (1)
Mixed/Multiracial	7.7 (3)
Other	2.6 (1)
Sexual identity
Heterosexual	69.2 (27)
Bisexual	7.7 (3)
Lesbian	2.6 (1)
Gay/Homosexual	2.6 (1)
Other	18.0 (7)
HIV status
Negative	61.5 (24)
Positive	33.3 (13)
Don’t Know	2.6 (1)
Refused	2.6 (1)
Highest educational attainment
Less than high school or GED	17.9 (7)
High school diploma/GED	33.3 (13)
Trade school or technical training/Some college	35.9 (14)
College graduation	10.3 (4)
Graduate school	2.6 (1)
Current living situation
Stable housing	61.6 (24)
Transitional/marginal housing	25.7 (10)
Homeless	5.1 (2)
Other	7.7 (3)
Person currently living with a
Alone, no other person	36.8 (14)
A spouse/lover	21.1 (8)
Close friend(s) or roommate(s)	18.4 (7)
Any other adult (no close friend)	7.9 (3)
Other adult family member	5.3 (2)
A sexual partner (not spouse)	0 (0)
Other	13.2 (5)
No response selected	2.6 (1)
Main source(s) of income during last 6 months a
Employment (part or full time)	41.0 (16)
SSI, SSDI (Disability)	28.2 (11)
Sex work	18.0 (7)
Social Security	7.7 (3)
Income provided by spouse or sexual partner	5.1 (2)
Income provided by other family member(s)	5.1 (2)
Drug selling/dealing	5.1 (2)
Boosting or stealing	2.6 (1)
Other	33.3 (13)
Total monetary amount received in last 30 days
Less than $50 (e.g., less than $600/annual)	15.4 (6)
$51 – $249 (e.g., $600 – $2,999/annual)	15.4 (6)
$250 – $499 (e.g., $3,000 – $5,999/annual)	10.3 (4)
$500 – $999 (e.g., $6,000 – $11,999/annual)	18.0 (7)
$1,000 – $2,999 (e.g., $12,000 – $35,999/annual)	12.8 (5)
$3,000 - or greater (e.g., $36,000 - or greater/annual)	5.1 (2)
Refused	2.6 (1)
Missing	20.5 (8)

^aNot mutually exclusive

Social Network Structure and Composition

Participants described heterogeneity in the structure and composition of their social networks. Most consistently, participants described interconnected social networks that included many (and sometimes mainly) other trans people. The centrality and value of relationships among trans women emerged as a core theme in every focus group. Networks were depicted as tightly bound (e.g., “everyone knows each other” – Participant K) and often a vital source of support and connection. Several participants characterized trans women’s relationships as familial. As one participant, who was a service provider, observed:

They’re street family…Someone a little more closer than friends. So they develop a more personal relationship with them, not in a relationship that’s romantic but just more in the lines of they’re just closer friends and we consider them family … Mother, I hear a lot of, sister … auntie … Tia … so things like that. (Participant W)

Participants explained how these relationships helped mitigate barriers and facilitated access to health care and related resources. For example, Participant D described how she and a friend would accompany each other to health care appointments: “Sometimes we go to a women’s center or we take a walk or, if somebody’s got an appointment, we’ll go to each other’s appointment and stuff like that.” Participant A reflected on the crucial support she received from other trans women when first learning about and accessing gender-confirming treatment: “When it came to hormones and implants and body work, I would hang out with the girls that usually had that all done, and then they would take you under their wing and they would help you start your transition.”

Social connections with other trans women were established in venues, online, and through formalized structures or institutions such as support groups or social programs run by CBOs. Some community member participants spoke specifically about their role as both consumers and community leaders providing support. Participant R, a 29-year-old trans community member stated:

I pretty much try to help others as I go down on my road to the success, you know, so what I’ve learned down there, I’ll pass it down to the other people that are going through transitioning male-to-female or female-to-male and I try to help them out with resources, like where legal services are at and also where’s the best way to start your journey. (Participant R)

Participants characterized the connections between trans women as sources of social and emotional support but also instrumental support. The information sharing that took place within trans women’s social networks included where and how to access safe and inclusive health care and social services, as well as current events, fashion tips, safety advice, politics, and a wide range of other interests.

Participants perceived that racial, class, and generational differences among trans women stratified social networks. There seemed to be consensus regarding the relationship between one’s socioeconomic position and with whom, where, and how one would socialize. Social distance between groups of trans women was attributed to differences in life histories, geography, and relative privileges structured by race and class. Social differences were particularly emphasized by trans women who engaged in sex work. Participant C explained these differences in terms of spatial locations:

There’s a definite demarcation line between girls who are working professionally and a certain bar that they hang out or the area they work in. Then there’s people that I meet at [a LGBT social service agency] that are in the support group that have nothing to do with that world whatsoever. So, I think socioeconomic status widely separates those groups. (Participant C)

Participant BB speculated how socioeconomic and other divisions may be further structured by generation: “There are trans women that were accepted as children now, so they never grew up, you know, they’re going to college, so they wouldn’t understand the experiences of a young trans woman that basically grew up out on the streets.”

Some participants described large and robust social networks included family (given and chosen), friends, spouses or boyfriends, and coworkers; however, others described significant social isolation. As one participant reflected on her social support, she shared: “I don’t really hang out with nobody. It’s mostly myself and maybe my son, and that’s it.” (Participant Q). Another stated, “I moved to the Valley, I don’t know where (trans people) are at” (Participant MM). For a few participants, social isolation was structured by economic relations of the sex trade in which “clients,” “dates,” or “johns,” were the primary people with whom they routinely interacted. For example, Participant P explained, “The main people that I connect with in a month is first and foremost, it’s my dates, escort service dates. That’s the most important.” Or, as Participant Q described, “The only person I communicate with is my sugar daddy, that’s it. Nobody else.”

Overall, participants social networks were robust and diverse; however, there were important negative case examples (described above). For these trans women, several issues contributed to restricted social networks – family obligations, geographic distance from neighborhoods in Los Angeles where trans-specific or inclusive social venues and service providers that are located.

Technology Use Patterns

As demonstrated in Table 3, technology use among the participants was ubiquitous. Participants discussed the routine use of mobile phones to maintain connections with social network members, most commonly through texting and web-based SNS platforms, specifically Facebook. The nature and patterns of technology use was varied and access to smartphone apps was stratified by income. As described by Participant O, “If you’re low-income, you can get a government-issued phone—it’s free talk and free text… But you can’t go online and you can’t download.”

Table 3.

Technology use (N=39)

Technology Use	% (n)
Has a smartphone
Yes	74.4 (29)
No	25.6 (10)
If yes, type of smartphone (n=29)
iPhone	27.6 (8)
Android	41.4 (12)
Samsung Galaxy	17.2 (5)
Other	10.3 (3)
Missing	3.4 (1)
If yes, often communicates with:a (n=29)
Other trans women	53.9 (14)
Friends who are not trans	50.0 (13)
Family of origin	28.0 (7)
Spouse/lover	16.7 (4)
Casual sexual partner	12.5 (3)
Exchange sexual partner (for sex work)	12.5 (3)
No response selected	25.6 (10)
If yes, uses smartphone to connect with people by:a (n=29)
Talking	86.7 (26)
Texting	86.7 (26)
Apps	83.3 (25)
Internet sites	63.3 (19)
Email	56.7 (17)
Other	6.7 (2)
No response selected	23.1 (9)
Other device(s) used a
Laptop	39.5 (15)
Desktop computer	39.5 (15)
Public computer (e.g., at the library)	26.3 (10)
Tablet	23.7 (9)
Wearable device	7.9 (3)
Other	7.9 (3)
No response selected	28.2 (11)
Social networking site(s) currently used a
Facebook	92.1 (35)
Google+	39.5 (15)
Instagram	36.8 (14)
Twitter	29.0 (11)
LinkedIn	21.1 (8)
Snapchat	15.8 (6)
Pinterest	13.2 (5)
MySpace	7.9 (3)
Other	23.7 (9)
No response selected	10.3 (4)
Website(s) currently used a
Craigslist.org	51.6 (16)
Okcupid.com	22.6 (7)
Blackgaychat.com	9.7 (3)
Adam4Adam.com	6.5 (2)
Match.com	6.5 (2)
Gay.com	3.2 (1)
Manhunt.com	3.2 (1)
Rentboy.com	3.2 (1)
Other	19.4 (6)
No response selected	46.2 (18)
“Apps” currently used a
Grindr	6.5 (2)
Jack’d	6.5 (2)
Hornet	6.5 (2)
Scruff	3.2 (1)
Mister	3.2 (1)
Boy Ahoy	3.2 (1)
Other	9.7 (3)
No response selected	82.1 (32)
Frequency of social networking app use (e.g., Facebook, Twitter, Instagram, Pinterest) to connect with people
Daily	79.5 (31)
Weekly	10.3 (4)
Monthly	2.6 (1)
Missing	7.7 (3)
Typically connects with people in their life: a
By smartphone	60.5 (23)
In person	55. 3 (21)
By computer (laptop or desktop)	34.2 (13)
By cellphone (no smartphone)	29.0 (11)
By tablet	15.8 (6)

^aNot mutually exclusive

Participants described how technology offered a portal to social worlds and information exchange that may not be as easily accessed by trans women offline and was viewed as an asset for collective organizing. As Participant KK explained, “Most trans women I know, they found a sanctuary, a refuge, a heaven, in technology. They open up their laptop or their phone or whatever and they just start communicating with the rest of the world and then they have friends everywhere.” Participant BB spoke to the multitude and diversity of social media outlets for trans women:

There are literally hundreds and hundreds of groups that cater to trans women, and then there’s different kinds of groups. There are groups on Facebook for makeup tips and the latest fashion, and then there are ones that are more peer-centered toward activist groups and transgender rights and transgender equality.

Many participants utilized websites that have been developed by and for trans people to exchange information (e.g., Laura’s Playground, Susan’s Place, True Selves), as well as subcultural sites that were viewed as inclusive of trans women (e.g., Fetlife). Participants described how groups by and for trans people online produced opportunities to find and associate based on shared interests or cultural backgrounds. Some perceived that racial and class differences further informed where and how trans women build social networks and share information online. As Participant CC explained:

There’s probably 20 or 30 different groups on Facebook that I’m a part of that I see people come to for such resource gathering … it does very much break down on socioeconomic and racial structures as well, like there are certain groups you can see primarily frequented by middle to upper middle-class white women. Some groups you’ll see more [people of color], so it really does vary. (Participant CC)

For some, online worlds provided participants with an opportunity to feel connected with other trans people and to express themselves in ways they may not be able to offline. Yet online environments also raised challenges for identity management and navigating disclosures related to gender identity. Some participants described having multiple online profiles on platforms like Facebook in order to maintain social ties with their family of origin or social network members who may not be aware of their trans identity, and another online profile to connect with other trans people. In this way, the Internet allowed participants some control over identity disclosure that might not have been possible prior to the proliferation of technology but also contributed to stressful compartmentalization between social worlds. As Participant C explained, for example, “Cause I’m not completely out back east. Some people know and some people don’t, so I use that Facebook page as a way to communicate with friends and family who might not be as accepting and still maintain my male identity.” Efforts to maintain multiple online profiles often reflected and produced negotiations of identity across diverse contexts or communities.

I hang out with some cisgender people. A lot of skateboarders—I’m a skater and I go back in boy mode and hang out with them at the skate park. I also have three different Facebook accounts for various purposes. One is a boy Facebook page, though I use that less and less … One is for the girl that I am, and I use that primarily … I’ve got a separate Facebook page for my sobriety and sober friends. (Participant A)

Online environments sometimes raised significant challenges, particularly in the context of connecting and negotiating with potential sexual or romantic partners. Participants observed how the prescribed gender binary options for online dating profiles and other sites can exacerbate experiences of exclusion, hostilities, and unwanted sexual objectification.

On a typically straight dating site […it’s] like, ‘Well, you’re not a man and you’re not a woman so you shouldn’t even be here in the first place.’ That’s been my experience, like, a lot of that kind of backlash online. […] If you’re all sorts of other things, genderqueer or, you know, many other things, there’s no selection for that. There’s not even a third selection, period. (Participant I)

Although greater visibility for trans people and perspectives in online spaces was generally praised among the participants, individual decisions about whether, when and how to present one’s trans experience online varied. For at least one participant, being open about her trans identity online was a subversive form of activism and empowerment:

Until this ends where people will treat me one way before they find out I’m trans and then they’ll treat me differently once they find out I’m trans, until that doesn’t work, I choose to identify … I proudly wear it on my sleeve because I want people to see that we have talents, that we have gifts that we are artistic and we are creative. And empower our trans sisters … One day there will be a time where we don’t have to wear it on our sleeves because we won’t be treated any differently once they find out. But until then, I choose to wear it on my sleeve. (Participant BB)

Other participants described disclosure online as a form of harm reduction from potential hostility and physical violence. Participant V and W both discussed how and why they chose to indicate their trans embodiment or identity online:

Just for my safety again, not that I have to, I say ‘post-op transsexual female’ or whatnot, looking to whatever, meet friends or whatever. And the reason I do that is because I want to get that over with—I mean, I’ve seen that a lot of guys are very receptive to that. (Participant V)

Some of these girls, you would never know if they’re a trans, and then when they find out later on, if they do meet in real life, then it can become a dangerous situation for them. So a lot of times, they will again limit themselves as to which social groups and which social sites they’ll select and use. (Participant W)

Participants involved in the sex trade often distinguished between online technologies used to communicate with clients (“tricks” “johns” “trade”) and potential romantic or sexual partners for pleasure and intimacy (“boyfriend”). Phone-based party lines were also used by trans women as a form of harm reduction in connecting with clients. As Participant F explained, “… a lot of girls go out there and hustle on the streets. I think through the chat lines, it’s more safer—the johns know what they’re getting.” The mention of phone-based party lines alongside other partner seeking technologies used by participants engaged in the sex trade demonstrates the durability of these older technologies. While trans visibility was important to the participants, empowerment and safety were the main reasons why some trans women chose to indicate that they were trans online, with technology offering a particularly important strategy for violence prevention among those engaged in the sex trade.

Accessing Transgender Health Resources Online

SNS/tech platforms were used by participants to find trans-specific health information and related resources. Participants emphasized their use of online forums established and managed by and for trans people, such as trans-specific Facebook groups and independent websites. Several participants described conducting searches for trans health information, using terms including, “transgender services,” “transgender health care,” “transition services,” “I think I’m trans,” “I’m a boy that wants to be a girl.” In addition to conducting independent searches, participants mentioned seeking out health information from a range of general health information websites such as WebMD, Medsafe, Wikipedia, and Online Yellow Pages. A few participants sought health information through trusted social service organizations and news sources.

Participants observed that some of the most helpful online resources were sites that allowed users to generate content such as YouTube, Tumblr, and Reddit. Of particular interest were social media platforms where trans people share their personal narratives and provide advice. As Participant R described, “[I]t’s like we’re also seeing them on their journey, like when they’re transitioning. They went to the doctor one day, they were on pills, and then they got update doses and just keep it going.” Participant B also spoke of the utility of message boards that enabled information sharing, “[T]here’s a Website, it’s EmptyClosets.com. …[I]t’s a forum where there’s a huge trans community as well on there, I’ve seen. And sometimes these topics come up and people just add to it.”

Participants used websites to share experiences with healthcare providers and gain information regarding hormone therapy and other gender confirming treatment, including hair removal and surgery. A few described how navigating online resources required them to decipher and determine which information was accurate and trustworthy:

Some message boards, groups, websites are very open with their policies on discussing dosages and medications and things like that, and there are other ones that are very much not. So I can give you a list of the different websites—there’s probably about 15 or 20; 5 or 6 of them that I hardcore used for my own transition. (Participant CC)

Given the wealth and variability of information available to trans women online, several noted a need to improve the accuracy, availability, and delivery of health information. For example, Participant C noted the frustrations of encountering conflicting information online, and the lack of trans-specific information on mainstream health sites:

I started researching hormones on Wikipedia. And one link leads to another, and you start reading about hormones and, I don’t know, I’m fairly scientifically minded, but after a while, it all starts to look like gobbledygook, and…you get exposed to so much information online, and then some of the information is contradictory.

In sum, many participants relied on the Internet to search for health-related information and to locate services and providers. However, the veracity of information gathered online and participants’ ability to grasp complex medical information in a way that was useful and relevant to their specific needs remained in question. Participants particularly valued online spaces that allow users to share and rate information amongst one another. Peer-based information sharing was preferred over open Internet searches because they coupled medical information with real-life testimonials.

Discussion

Many of the participants maintained dense social networks with other trans women, on which they often relied for emotional and instrumental support including assistance in accessing health information and healthcare services. Technology served as a crucial resource for collectively organizing resources and establishing relationships with other trans women. Most participants were connected to other trans women online where they exchanged health information. Three themes emerged from the five focus groups: (1) Social network structure and composition; (2) Technology use patterns; and, (3) Accessing transgender health resources online. Together, these themes provided insight on how best to leverage social networks and technology use for health promotion, including HIV prevention and treatment, for trans women.

Social Network Structure and Composition

Participants’ social networks were diverse and characterized by the inclusion of familial relationships (given and chosen), friends, coworkers, romantic partners, and clients (for those in the sex trade). Consistent with Reisner and colleagues’ (2009) findings among trans women sex workers in Boston, focus group participants endorsed the pivotal role of other trans women in providing social and familial support and daily survival strategies. Given that the majority of participants in this study were not engaged in the sex trade, our findings extend those previously established among trans women sex workers to poor and low-income trans women in urban areas more broadly. Participants described looking to other trans women for health care information, resources, and economic opportunities as well as offering support and guidance to those who were younger or recently identifying as transgender.

The strength of existing peer networks suggests the utility of network-driven HIV prevention intervention strategies for trans women. Previous studies have indicated that peer support is a significant moderator in the relationship between stigma and psychological distress among trans women (Bockting, Miner, Swinburne Romine, Hamilton, & Coleman, 2013). Because trans women already look to other trans women in their online networks for health care resources and information, the development of community-based and peer-driven models may be particularly effective in health promotion strategies with trans women, including reduction of sexual risks for HIV transmission (Nemoto, Operario, Keatley, Nguyen, & Sugano, 2005), increasing antiviral therapy adherence among trans women living with HIV, particularly trans women involved in the sex trade (Deering et al., 2009), and PrEP uptake, adherence and persistence among HIV-negative trans women (Reback, Clark, Rünger, & Fehrenbacher, 2019).

Technology Use Patterns

Robust social networks were not present for all participants, as some indicated a significant degree of social isolation. However, the vast majority agreed that technology played an important role in the formation and maintenance of social networks and in accessing information related to health, both general and trans-specific. Most participants were avid technology users and relied on SNS/tech to connect with their social networks and exchange information. Our sample was diverse in terms of age, race/ethnicity and socioeconomic status; however, all were active technology users, which is consistent with recent evidence of the closing digital divide across sociodemographic groups (Anderson & Kumar, 2019; Perrin & Turner, 2019). Facebook was by far the most popular SNS referenced, which may be useful knowledge for future intervention development as Facebook-based popular opinion leader models have been especially effective in increasing HIV testing and decreasing HIV risk behaviors among gay and bisexual men (Young et al., 2014). Future work is needed to establish the utility of such interventions and to tailor their content and delivery to meet the needs of trans women.

The social spaces trans women established and inhabited through technology can provide portals to meaningful connections and a sense of belonging. However, many SNS/tech spaces were perceived to replicate forms of discrimination, exclusion, and harassment that many trans women experience offline. In the context of dating sites, for example, participants noted that binary gender fields negated non-binary and trans experiences, producing dilemmas for when, how, and whether to disclose information about their gender identity to potential partners. Participants also described unwanted sexual objectification, bias, and harassment online, as factors that created barriers to inclusion and safety. Several participants mentioned creating distinct profiles to maintain connections to different types of social network members.

For some, seeking clients or sexual partners online and openly describing themselves as trans was a crucial harm reduction strategy for preventing potential violence. However, because the focus groups were conducted prior to the passage of the federal Allow States and Victims to Fight Online Sex Trafficking Act and the Stop Enabling Sex Traffickers Act (referred to together as FOSTA-SESTA) in April 2018, which broadly curtailed the use of online platforms by those engaged in the sex trade, it is anticipated that some of these findings may be dissimilar today. For example, Craigslist has discontinued its personals advertising section following the passage of FOSTA-SESTA, a platform which several participants utilized at the time of the focus groups. Although the broader impact of the policy on technology use among trans women would warrant additional study, these findings support claims that this legislation may have a negative impact on the established harm reduction strategies among trans women in finding and negotiating the terms of sexual relationships, including those within the sex trade.

Accessing Transgender Health Resources Online

Technology has transformed the way in which individuals seek health information (Cline & Haynes, 2001). For participants, technology was a key access point for health resources. Participants looked to a variety of social media resources, including trans-specific Facebook groups and YouTube channels, as well as general medical websites (e.g., WebMD) and trans-specific websites (e.g., Laura’s Playground, Susan’s Place) for information on a variety of topics related to gender confirming health care as well as general health information. Some participants expressed challenges in finding reliable information online, including confusion about hormone dosing. This may be an indication that trans women rely on the Internet to provide trans-specific health information, in the absence of accessible and accurate medical advice. This relationship warrants more attention in future research in relation to the state of best practices in trans-specific healthcare. Many trans people rely on information exchange with other trans people about health and then inform and advocate their needs to medical providers; and some medical providers rely on that information from their clients to inform practice (Poteat, German, & Kerrigan, 2013). Several participants expressed interest in SNS/tech-based resources that provide up-to-date and trustworthy health related information that could also address a range of topics of interest to trans people. Because maintaining current health information online can be challenging there may be opportunities to help connect trans women to health professionals that can answer questions via chatrooms, as such strategies have been useful with other groups at heightened risk for HIV (Lelutiu-Weinberger et al., 2015; Rhodes, 2004).

Leveraging Social Networks and Technology for HIV Prevention and Treatment among Transgender Women

Public health researchers and program planners can support the existing technology-based infrastructure developed by trans women and invest in trans women’s leadership in the design and implementation of technology-based trans-specific health promotion. Several participants believed that because trans women were increasingly visible in the media, younger trans women may face fewer challenges related to stigma and discrimination compared to their older trans counterparts. However, recent work has demonstrated similar levels of discrimination and stigma between trans women in the late 1990s and those surveyed 17 years later (C. J. Reback et al., 2018). Several participants mentioned that online environments were also challenging for identiy management and navigating disclosures related to gender identity. These insights can inform the development of interventions that are tailored for transwomen and other gender minorities. For example, many online resources already exist that use recommendations highlighted by our participants, such as allowing users to choose, write-in, and change the way their name, gender identity and pronouns are displayed, or make such disclosures optional; get rid of “real name” or “legal name” requirements; have a name/pronoun change process so that the user’s history does not display a someone’s previous or birth name; provide the option for “private” or “locked” accounts; provide “friend” group filter mechanisms to allow users to curate their social media following and control how their content can be viewed; draft codes of conducts that include policies around harassment; and ensure that when people delete their accounts for whatever reason, their data does not linger (Ellice, 2018; White, 2019).

Many SNS, such as Facebook, already have native functions to allow the creation of closed groups, which can allow trans women to interact with others and be shielded from transphobia and other forms of online harassment and discrimination. These groups can serve as ideal platforms for HIV treatment and prevention information dissemination and strengthen social support networks. Trans health-related websites and apps may require specific health promotion and disease prevention strategies that are tailored based on age, relative access to economic resources, and other social differences. Online resources would be most relevant if trans women were placed in creative direction and leadership roles to guide content development, design and delivery of those resources. Finally, online resources must be available in a variety of languages and made easily accessible to those with a range of educational backgrounds, learning styles and health literacy.

This study must be interpreted in light of its limitations. Given the formative nature of this work and our CBPR approach, the convenience sample was small and participants were all recruited from CBOs, street outreach, and word-of-mouth in a west coast metropolitan area. The recruitment of our parent study dictated risk behavior requirement for participants. Thus, many participants were receiving services from a CBO and, therefore, were familiar with trans-related and/or health-related prevention and care messages. As such, responses may not reflect the experiences of trans women in other geographic settings or those who do not seek services or support from organizations based in their communities. Additionally, while focus groups were conducted by highly trained investigators who have worked extensively in the trans community, participants may have responded differently had the groups been facilitated by a trans woman, due to social desirability bias and other factors. Additionally, the participants’ responses may have reflected some degree of social desirability bias toward acceptability of technology-based health promotion for trans women. Finally, since all focus groups were conducted in English, findings may have differed had the sample included non-English speakers.

Conclusions

Despite these limitations, this research makes an important contribution to the growing body of literature on social networking, technology use and health information seeking patterns of trans women. This work lays a foundation for other researchers to further investigate the utility, feasibility, and acceptability of technology use for health care interventions among transgender women. This is among the first qualitative studies to examine the role of technology in the lives of trans women and adds to a growing body of evidence that suggests technology may be useful in health promotion for trans women, including HIV prevention and treatment. One unique aspect of focus group interviews were the variety of perspectives around the table, including a group comprised of trans-identified staff who work with trans communities. The inclusion of this focus group captured broader dynamics of trans communities because they were not only able to represent their own perspectives but also to represent hundreds of perspectives of trans people they have worked with over the years.

Strong social networks and avid technology use suggest that peer-driven, technology-based HIV prevention and health promotion strategies may be especially effective for trans women. Such strategies must take account of the vast intergroup differences between trans women by race, ethnicity, language, generation, and economic status, including engagement in the sex trade. Among those who described smaller social networks or more social isolation, the internet is a particularly useful resource for marginalized groups like trans women to broaden social support networks in the absence of more geographically proximal networks. For those in the early stages of transition, online resources can provide important health information and perspectives of other trans people. Furthermore, the majority of these resources can be accessed anonymously and with varying degrees of disclosure regarding trans identity.

Trans women are among the groups most disproportionately impacted by HIV/AIDS in the United States. In order to reduce risk for acquisition and transmission of HIV among trans women, trans-specific prevention and intervention strategies are needed. This study provides lays the groundwork for the development of health promotion interventions for trans women delivered via technology platforms. Researchers and service providers who are not trans women must elevate the leadership of trans women on the design and functionality of such technology-based HIV prevention and health promotion strategies. Strategies advocated by empowerment programs and workplace diversity inclusion programs recommend that workplaces should survey their current state of inclusion, create a timeline for improvement, work with trans employees to set ambitious but achievable milestones towards a more inclusive workplace, invest in and train trans-inclusive executives and managers, develop and implement an inclusive workplace culture by holding mandatory cultural competency trainings for all staff, and include trans people in advisory positions (Human Rights Campaign, 2016). Training and mentorship programs enable trans people to gain the skills necessary to lead these efforts are crucial to the greater inclusion of trans people in trans health practice and research. Furthermore, non-trans researchers and service providers must be champions of research projects and technology-based strategies that are developed by and for trans people.