“Don't Tell Him You Have HIV Unless He's ‘The One’”: Romantic Relationships Among Adolescents and Young Adults with Perinatal HIV Infection

Abstract

Individuals with perinatally-acquired HIV (PHIV) are surviving into young adulthood. Previous literature has explored the sexual behavior of those with PHIV. However, their perspectives on navigating romantic relationships are not well understood. Semi-structured interviews were conducted with 35 young adults living with PHIV recruited from two pediatric infectious disease clinics in the southeast United States. The majority of participants were African American (n=27, 77.2%), female (n=23, 65.7%), and the mean age was 20.7 (range 15–30) years. Questions focused on experiences with dating and romantic relationships as well as relationship advice for others living with HIV. Transcribed interviews were coded for emergent themes. Qualitative analyses revealed that the majority of participants have dated and struggled with their HIV status in their intimate relationships. The majority of those who disclosed their HIV status to past partners had experienced some form of rejection. However, several participants reported receiving support upon disclosure. Some individuals had never disclosed to a romantic partner, but carefully managed intimacy by delaying dating, terminating relationships, and “taking it slow.” Advice fell into two broad categories: “be safe” which referred to the physical protection of self and partners, as well as emotional protection from possible rejection. The second advice category was basic encouragement which stressed the importance for young adults living with HIV to have hope that they would find a supportive partner and to be patient. The focus of education must include not only transmission risk factors, but also developing and maintaining healthy relationships in the context of a highly stigmatized illness.

Introduction

P erinatal HIV infection (PHIV) was first publicly recognized in the U.S. in 1983.¹ The numbers of perinatally infected children rose until 1992 when antiretroviral drug regimens decreased the rate of mother to child transmission from 25% to 5%.² Continued medical advances have significantly decreased AIDS-related deaths, and the current risk of mother-to-child transmission in high resource settings is less than 2%.³ Adolescents with PHIV are now living well into young adulthood. Recent literature has documented sexual behavior,^4
–6 and pregnancies among teens with PHIV.⁷ However, the primary focus has been on describing sexual behaviors or obstetrical outcomes, not on the underlying attitudes towards or experiences with romantic relationships.^8,9

The long-term survival of individuals with PHIV has raised the issues of intimacy, sexuality, and childbearing in a population whose treatment, until recently, has been managed within pediatric medicine. The reality of individuals with PHIV reaching adulthood requires guardians and providers to conceptualize the life cycle of individuals with PHIV. One of the primary developmental tasks for adolescents and young adults (AYA) is to explore and establish intimate relationships.¹⁰ This study provides a qualitative exploration of challenges confronted by AYA with PHIV in forming and maintaining intimate, romantic relationships.

Background

Approximately 9100 individuals with PHIV live in the U.S. today.¹¹ Their demographics reflect the AIDS epidemic among women of childbearing age during the early 1990s prior to the discovery that perinatal transmission could be interrupted with antiretroviral treatment. HIV often occurs in the context of urban poverty and substance use and is overrepresented in people of color.¹² Infected offspring of HIV-positive women frequently experienced multiple out of home placements due to death or incapacitation of caregivers and pre and post-natal drug exposure.¹³ Biological and psychosocial stressors have resulted in an increased risk of cognitive delays and emotional problems including attention deficit disorder, depression, and anxiety among AYA with PHIV.^14
–16 HIV-related stigma and discrimination may have further complicated their lives and often resulted in their HIV diagnosis being held as a family secret.^17,18 Additionally, children with PHIV were not expected to live until adolescence. Guardians and medical providers may not have shared information focused on preparing AYA with PHIV for such challenges of young adulthood as relationship formation. In combination, these factors complicate the already challenging process of initiating and maintaining relationships.

Disclosure

Youth with PHIV deal with disclosure issues on multiple levels. First, they must learn of their own HIV status, which may result in psychological distress and changes in the child's adherence to medication regimes.¹⁹ Second, children may be told by caregivers to keep their diagnosis private due to potential discrimination. However, as close friendships develop, youth may want to reveal their “secret” to alleviate feelings of shame or leading a double life. The etiology of HIV disease adds to the complicated nature of disclosure for youth with PHIV—their disclosure to friends or romantic partners often necessitates the “secondary disclosure” of their parent(s)’ diagnosis and/or their adoption status. Despite these significant challenges, research evaluating post disclosure outcomes of infected children who disclosed to friends suggested that disclosure was associated with better health markers one year later.²⁰

After years of being told not to disclose their HIV status to others, AYA with PHIV may face public health requirements to disclose to sexual partners. Despite legal and community pressures to disclose, preliminary research suggests that AYA with PHIV are less likely to disclose their HIV status than those living with behaviorally acquired HIV (BHIV).²¹ Michaud et al. studied aspects of disclosure among 29 adolescents with PHIV.²² Of the 10 adolescents who were sexually active, six had disclosed to their partner. Results indicated a variety of outcomes post-disclosure, ranging from acceptance to rejection. The authors concluded that participants experienced protective benefits from not disclosing their HIV status to friends and romantic partners. However, much “energy is spent in keeping it secret”.

Sexual behavior

Although sexual behavior is often a component of romantic relationships, studies have found variable rates among AYA with HIV.^23,24 Previous research has found that by late adolescence, the majority of youth with PHIV were sexually active and had relatively low levels of knowledge concerning HIV transmission and safer sex practices.²⁵ Another study found that of 105 sexually experienced adolescents with HIV, 49 had engaged in unprotected sex, supporting the need for interventions designed to reduce risk of secondary transmission of HIV.⁵ Subsequent research indicated that adolescents with an HIV-positive caregiver reported a later sexual debut than youth with an HIV-negative caregiver.⁴ Little research describes the perspectives of AYA with PHIV on romantic relationships. In Quebec, Fernet et al. suggested that disclosure to romantic partners greatly influenced the process of relationship development.²⁶ However, their relatively small sample primarily consisted of African and Haitian immigrants, thereby limiting the ability to generalize to a U.S. population.

Current study

AYA with PHIV were born at a time when the long-term survival rate was low and life expectancy did not exceed adolescence. Given that young adulthood is a time to establish intimate relationships²⁷, it is important to explore the perspectives of AYA with PHIV on navigating romantic relationships in order to best support them.

Methods

Participants

Thirty-five AYA with PHIV over the age of 14 who were current or former patients at two pediatric infectious disease clinics in the Southeast of the U.S. participated in the study. AYA were eligible for the study if they were aware of their HIV status, did not have cognitive impairments that would interfere with their ability to answer the interview questions, and could communicate in English. A total of 42 AYA were invited to participate in the study. Two females and one male declined and three males and one female could not be reached after initially agreeing to participate.

Procedure

Elon University's Institutional Review Board approved the study. Data were collected over a period of 10 months, from July 2011 to April 2012. A social worker from each of the two pediatric infectious disease clinics introduced the study to eligible patients. Interested participants were then referred to a member of the research team. Semi-structured interviews were conducted by trained interviewers either in person or over the phone, based upon the participant's preference. Participants were provided a $25 gift card in compensation for their participation. Interviews were recorded and later transcribed.

Interview

The interview focused on experiences with dating and romantic relationships as well as relationship advice for others living with HIV. Questions included:

• Who in your life knows you have HIV? What was it like to tell them/what do you think would happen if you were to tell someone?

• How, if at all, does having HIV influence your relationships?

• What, if any, challenges do you perceive related to dating and romantic relationships for young adults living with HIV?

• What dating advice would you give to another young adult who is living with HIV?

Data analysis

Interviews were transcribed and then compared to the original recording to assure accuracy. The transcripts were entered into Atlas.ti 6.0, a qualitative data analysis software program.²⁸ The authors used a grounded theory approach to analyze the data, which employs an inductive strategy for generating theory that comes about after examining the data for emergent themes.^29,30 Grounded theory is especially relevant for the current project since the participants assign meaning to the experience of developing romantic relationships as opposed to the confirmation of existing hypotheses regarding relationships. The authors independently read the interview transcripts in their entirety and following the traditions of the grounded theory method, analysis began with a process of open coding using ATLAS.ti.³¹ The readers met frequently to discuss identified themes and to come to consensus on the coding. Once initial codes were identified, the authors searched for linkages across themes.

Results

Through semi-structured interviews, this study explored the perceptions of romantic relationships among AYA with PHIV. Table 1 summarizes the demographic characteristics of the AYA (mean age 20.7 years, range 15–30 years). The majority of participants were female (65.75%) and African American (77.1%). Approximately half of the participants received Medicaid and lived with a biological or adoptive parent. The demographics of participants reflect those of the two clinics from which they were recruited.

Table 1.

Participant Demographic Features

Demographic variable (n=35)	n (%)
Age
Mean	20.7 (range 15–30 years)
Females	23 (65.7)
Ethnicity
Black/African American	27 (77.1)
White	3 (8.6)
Hispanic	2 (5.7)
Mixed race	3 (8.6)
Insurance
Private insurance	12 (34.3)
Medicaid/Ryan White	18 (51.4)
Uninsured	5 (14.3%)
Taking HAART	31 (88.6%)
HIV symptoms in past 6 mo	5 (14.3%)
AIDS diagnosis	9 (25.7%)
Living situation
Lives with parent	18 (51.4%)
Lives independently	8 (25.7%)
Lives with other relative	6 (17.1%)
Lives with partner	2 (5.8%)
School
Some HS	2 (5.7%)
Currently in HS	9 (25.7%)
HS graduate	5 (14.3%)
Some college/vocational school	9 (25.7%)
Currently in college	7 (20.0%)
Undergraduate degree	2 (5.7%)
Graduate degree	1 (2.9%)
Employed	19 (54.3%)

Table 2 describes relationship features of the study sample. Almost three-quarters of young adults (71.4%) reported sexual activity. Only 20% reported currently being in a committed relationship. The majority (90.6%) who had ever been in a relationship reported engaging having opposite sex partners, while 9% of those who had been in a relationship reported having same-sex partners. Several participants reported pregnancies. Of those pregnancies that resulted in a live birth, all offspring were HIV-negative. The majority of female participants reported using contraceptives, including Depo-Provera, oral contraceptives, and Norplant. However, relatively few of participants who were sexually active (36.0%) indicated they used condoms all the time. While less than half (40%) had disclosed their HIV status to their current partner, 68% reported disclosing to a partner in the past.

Table 2.

Relationship-Related Features

Relationship variable (n=35)	n (%)
Ever sexually active	25 (71.4%)
Using contraceptives (other than condoms) (females, n=23)	16 (69.6%)
Condom use all the time (males and females, ever sexually active, n=25)	9 (36.0%)
Current relationship status
Committed relationship	7 (20.0%)
Uncommitted (not exclusive)	3 (8.6%)
No relationship/single	25 (71.4%)
Ever disclosed to a romantic partner (of those ever in a relationship, n=32)	17 (53.1%)
Disclosed to current partner (n=10)	4 (40%)
Sex of past romantic relationship partner(s)
Opposite-sex partner	29 (82.9%)
Same-sex partner	2 (5.7)
Both same & opposite sex partners	1 (2.9)
Never been in relationship	3 (8.6)
Ever pregnant/gotten partner pregnant	8 (25.7%)
Currently caring for own child/pregnant at time of interview	5 (14.3%)

Qualitative analyses revealed that the issue of disclosure was central to participants' perspectives on the initiation and maintenance of romantic relationships. The pressure to disclose their HIV status to sexual partners influenced their direct experiences with others. Anticipatory concern also altered dating behavior and relationship outcomes as participants struggled to manage intimacy (Table 3).

Table 3.

Qualitative Themes of Relationship Experiences and Advice

Relationship experiences

• Experiences with relationship

∘ Rejection

∘ Support

∘ Other HIV-related challenges

• Managing intimacy

∘ Delayed dating

∘ Termination of relationships

∘ Taking it slow

Advice to peers

• Be safe

∘ Establish trust

∘ Go slowly

∘ Protect yourself and partner

∘ Physical health

∘ Emotional health

• You can do it

∘ Normalizing HIV

∘ Self-respect and patience

Experiences with disclosure and romantic relationships

Many of the participants who disclosed their HIV status to a current or past partner described challenges related to the sharing of this information. Their HIV status was often referred to as a “secret” and associated with rejection when revealed to others. Disclosure was, at times, linked to the participant's experience with his/her own diagnosis, as described by a 28-year-old female:

I was told so late, and sort of kept in the dark about a lot of things. The way that I learned to communicate in general, but particularly about [HIV], is just keep it a secret… I sort of got sent these subliminal messages that it's dark, and dirty, and no one is going to love you… In terms of open communication, I didn't get a lot of guidance on how to handle that.

Analyses revealed that the majority of participants who had disclosed to a partner had experienced at least one negative outcome, most commonly rejection. Experiences with rejection resulted in hesitance to trust and anxiety about future disclosure. However, there was variability in relationship outcomes and several reported experiencing positive and supportive partners, though HIV-related relationship challenges still occurred within the context of a supportive partner.

Rejection

Experiences with rejection from romantic partners after disclosure endorsed by nine participants were attributed to concerns about HIV transmission, assumptions regarding the etiology of their illness, and struggles with public disclosure. A 17-year-old female disclosed her diagnosis after she and her partner had engaged in unprotected sex, which upset him and led to their separation:

Well, in the past we didn't use condoms, so when I told him, he started crying and he broke down, we didn't talk or nothing. So he started asking stupid questions, like if I sit on his toilet would he catch it, if I eat after him would he catch it, stuff like that. It really offended me. Me and him didn't work out, so we broke up.

An 18-year-old male described his frustration with encountering the assumption that he contracted HIV behaviorally upon disclosure to previous romantic partners:

They fail to hear the whole story of the matter, so… they think you just got HIV by sleeping around. It's like, ‘No, I was born with it, how ‘bout you shut your mouth for two seconds and listen.’

One 27-year-old female had publicly disclosed her HIV status during childhood, but experienced negative reactions from peers when she began dating her first boyfriend. Judgment from others strained their relationship:

It was almost like he was kind of embarrassed and he cared a little bit too much of what people said. And then, because I liked him, but I never knew this was his issue until I was older, because he would still mess with me and talk to me. Because he had issues, his issues then became my issues.

Support

Despite the frequency of negative past experiences after disclosure, five AYA described support provided by current or former partners to whom they had disclosed. Support was offered in the form of accompaniment to doctor's appointments, checking on his/her health, and learning more about HIV. For example, one participant (age 22) described support from her former boyfriend:

We still communicate now. Not like we used to but he was really supportive. He asked me questions, helped me with medicine and things of that nature.

Contrary to the earlier story of public disclosure, a 20-year-old, self-identified gay male experienced support when using social media after meeting potential partners. He explained, “I have a video on YouTube of someone doing an interview with me so I actually send that to their Facebook.” He had experienced mostly positive reactions, and attributed this to the fact that his disease was perinatally acquired:

A lot of the guys text me back and be like, if anything, that makes you so much more interesting than who I thought you were. Because it's not like I had contracted the virus. People look at me a little bit different when they realize that was I born with it.

Other relationship challenges

AYA who experienced support from romantic partners were not exempt from encountering HIV-related relationship challenges; including confidentiality, helping their partner understand their illness, and condom use. At the time of the interview, an 18-year-old male was involved with a supportive partner to whom he had disclosed noted that challenges were presented when he became hospitalized:

I was in the hospital once, and she couldn't tell her parents why. And she wanted to come see me. [But] her parents were being difficult about her coming to see me without them knowing why I was in the hospital.

One 19-year-old woman detailed her boyfriend's interest in learning more about HIV:

He had all these questions—crazy questions like “Could I get it by kissing you?”…we sat down and had a little chitchat about it at dinner and then that was it…He doesn't understand viral load and CD4 count and all that so I have to sometimes get my mom to explain it to him or he'll look it up on the internet.

Negotiating condom use was a challenge for a few females, who reported that their uninfected partners were aware of their HIV status and generally supportive, but resisted safer sex practices:

I have to try to get him to want to use a condom and when we do, he'll complain… I know that the chances aren't as high for a man to get it than a woman… but I still do worry. (24-year-old female)

Managing intimacy

Some individuals had never disclosed to a romantic partner, but carefully managed intimacy due to their anticipation of eventual disclosure, rejection and other HIV-related issues. Analyses revealed three subthemes related to managing intimacy including delayed dating, termination of relationships, and “taking it slow”.

Delayed dating

Eight participants reported delaying dating more than they would if they did not have HIV:

[HIV is] a big influence. It just makes me actually second guess the people that I would normally—I probably wouldn't even really talk to certain people if I didn't have the illness, maybe, I would say. Like my relationship with that person would be different, I would say, but I just try to keep my distance. I'm waiting for someone special. (22-year-old female)

I'm afraid to date because I'm afraid that if a guy won't like me all because of that or like I don't ever want to give it to another person because I know how much I've been through all my life. (18-year-old female).

One 21-year-old male reflected upon how his views on dating had changed, stating, “I've kind of…opened myself up more to dating I guess, but in the past, I wouldn't even think about dating”.

Termination of relationships

Six participants noted that, once a romantic relationship started, HIV influenced the deepening of the connection and ultimately resulted in separation. Participants explained that termination was easier than risking disclosure of their HIV status. One 19-year-old female explained that she distanced herself from others due to her HIV status:

I personally think it makes me push people away. Like I won't really get close to them and if I get to the point where I start getting close to them then… I start to slowly back away.

A 21-year-old male described a reluctance to let intimate relationships progress:

With my ex-girlfriend… I don't even think we kissed at all, so… like because in my mind, if we kissed then eventually we gonna go further, and then I'll have to tell her, and I ain't wanna go through all that so eventually I just kind of broke up with her.

Participants described concerns about the timing of disclosure and the threats posed to the relationship regardless of when disclosure occurred. For example, if the relationship was new, the AYA risked immediate rejection. According to one 18-year-old male, “if you tell them too soon it might creep ‘em out.” However, if the relationship was long-standing, concerns were expressed that their partner would feel hurt that they had not shared the diagnosis sooner. The end result could be the same—the termination of a relationship. A 19-year-old female stated: “[I]f I'm seeing a person for a couple of years it's going to get kind of hard to tell them, but then I end up just breaking up with them because it gets hard and I can't really explain it how I want to explain it.”

Taking it slow

Although the majority (32) participants engaged in dating, a recurrent theme was their management of intimacy by “taking it slow”. A 20-year-old female stated, “I wouldn't be one of those people that just has a fling. I'm very serious about dating.” Five participants described limiting or delaying sexual encounters due to the legal and ethical implications of non-disclosure and transmission:

It is sort of difficult to proceed with relationships in terms of my AIDS status because I have to be very careful around that person in terms of sex because I can't infect them. (20-year-old female)

Participants also felt less inclined to engage in casual sex due to requirements to disclose:

I can't go out one night and just randomly have sex with someone because I mean I'm not that type of person to be like, “Oh yeah, I'm HIV-positive.” (29-year-old female)

Participants described the necessary, and often lengthy, process of determining whether a partner was trustworthy enough to date. An 18-year-old male stated, “I try to really get to know a girl first, before I even date ‘em, because… I have to tell them eventually.” Characteristics sought after in potential partners included open-mindedness and a strong sense of self. For example, one young man stated:

I don't date unless I'm really sure that this person might be okay with it and then I can let myself go, and that doesn't happen that often. I have to be able to tell them up front. It makes it difficult. Some people can't deal with it.

Advice

The complex nature of navigating disclosure-related decisions was further illustrated in the advice provided by participants. It was considered very important to tell partners about one's HIV status, but the recommended method and timing of disclosure varied. For some participants, their advice was directly related to personal experiences with successful and unsuccessful romantic relationships. For others, it was a matter of conjecture as they had not yet dated, or had rarely dated. Participants offered an array of dating suggestions, some of which reflected their cognitive dissonance related to disclosing their HIV status. Advice fell into two primary themes: “be safe” and “you can do it”.

Be safe

The theme of safety emerged in suggestions for different strategies designed to manage disclosure. Subthemes included establish trust, take it slow, and protect yourself and your partner.

Establish trust

Eleven participants indicated that trust required AYA with PHIV to be very selective in their choice of partners and establishing trust was strongly advised before entering a relationship or disclosing one's HIV status. Disclosing was most important in “serious” relationships, whereas disclosing to casual partners was suggested to be risky. Requirements to disclose to sexual partners were frequently noted, but trusting one's partner first was most emphasized. The following quotes underscore the importance of being selective:

Always use a condom, but don't tell him you have HIV unless he's ‘the one.’ (22-year-old female)

Don't tell them your status unless you feel that you want to be sexually active with them without using any protection, or tell them if you feel in your heart that one day this person could be your husband or your wife. (22-year-old female)

Some advice related to being selective about dating reflected participants' own ambivalence about the timing of disclosure:

I would just tell them to be very careful with who they pick as partners and make sure if they're going to be sexually active with that person, to tell that person only when they feel they're ready and that person knows them enough not to judge them, so just to tell them about your status because it is against the law if you sleep with somebody and you don't tell them and they get infected, then you can go to jail. (20-year-old female)

Though he had not yet disclosed to any romantic partners, one 19-year-old male suggested a strategy for determining whether a partner was trustworthy:

Make sure you get to know that person first. As in, like, even tell ‘em a fake story about you got a friend who's HIV-positive and see how they react to it, and then you know from there.

Four participants suggested disclosing early as a litmus test, explaining that an unsupportive partner was not worthy of their time and energy. For example, a 25-year-old female said, “If someone is going to reject you, it sounds pretty cliché, but you don't want that person in your life anyway”.

Go slowly

Paralleling many participants' own approaches to dating, the suggestion to enter a relationship slowly was mentioned by nine participants. It was noted that this approach stands in contrast to traditional dating behavior of their generation, but that it is necessary for those with HIV to get to know their potential partners over time even more so than the typical young adult. An 18-year-old female noted:

Just don't be like everyone else. You have to take it slow…People need to get to know each other first, and then, you need to be up front, and they need to be up front with you, too, and then you can have a relationship.

A 24-year-old pregnant female related her advice of “go slowly” to her experience with her current supportive boyfriend:

I would definitely disclose my HIV status because that's an offense if you don't and you give it to your partner and I would kind of take things slow. I wouldn't even rush into having sex. Me and my boyfriend, we dated for three months until we actually became a couple and had sex.

Protect yourself and your partner

Fourteen participants encouraged others to “protect themselves”. The concept of protection included physical, as well as emotional protection. In many cases, participants referred to the importance of using condoms as a means to prevent the transmission of HIV to others, and to prevent the acquisition of other sexually transmitted infections:

Always…protect yourself from others as well because it's worse things out there than HIV also. (22-year-old male)

I guess I'd tell them to use condoms always. (18-year-old female)

A few noted that having an HIV-positive partner was not an exception to the rule of using protection, due to the possibility of infection by other strains of the virus:

If you date a guy that's HIV positive, he knows what you've gone through which is true, but you don't want to like get what he has,…a new strand [of HIV]. (20-year-old female)

Some participants noted that relationships are easier to initiate and maintain if both partners are healthy. Managing HIV medications was an important way to protect one's physical health. One participant discussed the importance of being healthy, but expanded the concept to include overall well-being:

You should be someone worth dating. You should be employed, be happy with yourself… have your goals set because you don't want someone else to control the way your life is going to go. (20-year-old male)

Participants also encouraged others to protect themselves emotionally by preparing for rejection. Preparing for rejection included understanding the consequences of a poorly executed disclosure. One young woman cautioned, “think long and hard before you do anything, before you tell them, before you decide to take it to the next level, just think about how much it is going to hurt you in the long run.” A 24-year-old mother of two said, “I would actually be prepared for rejection. I've been rejected many times with guys that I've liked.”

Finally, participants indicated that another form of emotional protection was taking steps to optimize the likelihood of a positive disclosure outcome in order to promote emotional health. Attention to details such as the setting and the inclusion of possible educational materials were suggested:

You can have pamphlets when you tell them and kind of explain it to them or ask, “Do you want to go to the doctor's with me so you can be educated? (27-year-old female)

If you feel like they're strong enough to actually disclose your status with that person then do so but don't rush into it. And if they do tell them, find a nice, quiet place and just take your time and hopefully they will accept that person because it's extremely hard. (22-year-old female)

You can do it

Participants offered reassurance that AYA living with HIV would one day find an accepting partner. As one participant noted, “Keep trying, never give up, there's always someone out there.” Themes included “normalizing” HIV and encouraging self-respect and patience.

Normalizing HIV

Much of the elicited advice originated from a desire to lessen HIV-related stigma. Participants expressed the sentiment that HIV is simply an illness and does not define an individual. For example, a 24-year-old female explained:

I mean, HIV doesn't rule who you are…You're still as normal as anybody else.

You've just got to take medicine and watch your blood counts and everything.

Another 21-year-old female echoed this sentiment, stating:

To me [HIV is] just like cancer. It spreads, it affects the body, it eats up the body. So it's just like a second cousin to cancer. It's just another name.

Self-respect and patience

Another form of encouragement was found as participants sought to let other young people living with HIV know that they were worthy of respect; that they should not lower their standards simply because a partner was supportive after disclosure. A 21-year-old male suggested, “If you do tell them and they accept you but it doesn't work out, don't stay with that person just because they did accept you for it.” Another young man stated, “You're not just tagging along.”

This form of advice was tempered with the view that while there is likely “someone out there,” he or she may need patience and understanding in order to fully accept and understand what it means to be involved with an HIV-positive partner. A 27-year-old female explained:

You have to be understanding and realize that all [people] know about AIDS is that you get AIDS and you die. So you have to be understanding [of] their questions because we've always been taught not to contract AIDS, so now we have to teach people how you can love somebody who has AIDS.

Discussion

This study explored young adults' experiences with relationships, perceptions of challenges in relationships due to their HIV status, and their dating and relationship advice for their peers. Although respondents experienced unique challenges to engaging in intimate relationships, relationships were desired and sought by all study participants. From a social-developmental perspective, the initiation and maintenance of successful intimate relationships is one of the major tasks of young adulthood.¹⁰ AYA with PHIV, notwithstanding the physical and social challenges of their disease, have the same need for intimacy as other young adults. Previous research with HIV-infected adults as well as adolescents has also indicated that disclosure to sexual partners is a significant challenge to establishing and maintaining romantic relationships.^23,32 Forty percent of sexually active participants in the current study disclosed to their current partners; the same disclosure rate found by Dempsey et al. in a multisite study of disclosure among perinatally and behaviorally infected AYA.³³ However, the finding that almost 70% of participants in the current study disclosed to partner in the past indicates that AYA with PHIV are disclosing their HIV status intermittently.

Rates of sexual activity in the current study (71.4%) are higher than previously reported rates among HIV-infected adolescents which have ranged from a low of 17% (mean age 13.7 years)³⁴ to a high of 41% (mean age 16.6 years).²⁵ Higher rates of sexual activity in the current study may be reflective of the older sample (mean age 20.7) as older youth with PHIV are more likely to engage in sexual activity.³⁵ Results support findings that AYA with PHIV are delaying the initiation of sexual relationships due to concerns regarding disclosure. Bauermeister et al.³⁶ and Elkington et al.³⁷ found that youth with PHIV were significantly less likely to engage in penetrative sex compared to HIV-negative youth from similar backgrounds. Participants in the current study specifically encouraged other AYA with HIV to delay sexual activity once a relationship has started as a strategy to avoid disclosure. However, disclosure did not necessarily lead to safer sex practices. Of interest was the finding that several young women reported their informed partners refused to use condoms. This phenomenon was also noted by Marhefka et al. in their qualitative research with adolescent girls living with PHIV which argues for the development of gender-specific secondary HIV prevention strategies.³⁸ None of the males in the current project described partners refusing to use condoms, however, further investigation with larger samples of males with PHIV are required.

Fear of rejection and concerns regarding trust were driving forces behind many relationship decisions similar to research by Fernet et al., which found that the risk of rejection was a common concern among a small sample of Canadian adolescents with PHIV.²⁶ Experiences and anticipation of rejection resulted from encounters with stigmatizing beliefs and attitudes toward people living with HIV. Previous research has found an association between HIV disclosure and an increased risk for intimate partner violence.³⁹ None of our participants reported disclosure-related violence. However, emotional turmoil and unwanted public disclosure were negative outcomes. In a qualitative study of HIV-infected young women, Hosek et al. found that previous experiences with rejection and judgment lead women to express concern over disclosing to others.⁴⁰ Medical providers in one study noted that AYA with PHIV “manage stigma” by taking extensive precautions when initiating and engaging in romantic relationships in order to minimize the risk of rejection.⁴¹ Similarly, fear of rejection was widespread among participants in the current study. However, most strongly encouraged others living with PHIV to seek relationships despite the stigma of HIV/AIDS. The contradictory nature of the empowering statements made to advise others compared to the anxiety experienced in their own perspectives on relationships mirrors the broader challenge of public health efforts to simultaneously de-stigmatize HIV/AIDS while supporting sexual risk reduction efforts.

Findings of this study must be considered in light of several limitations. For example, the sample population was drawn from two clinics in the southeastern US. The ability to generalize findings to other AYA may be limited to due to geographic setting. Additionally, more females participated than males. Although the percentage of females who participate is reflective of clinic demographics, it is problematic that more males agreed to participate but were unable to be contacted than females. However, Porter notes that, in general, females are more likely to participate in research than males.⁴² Further, all participants were connected to medical care. Findings may not be applicable to young adults with PHIV who are not engaged in care. Data are qualitative and based on self-report only. The researchers did not have access to medical chart information or perspectives from medical or social service providers. Standardized measures were not utilized.

The aforementioned limitations notwithstanding, the rich data yielded from this study may support the provision of psychosocial services to AYA living with PHIV. Although the desire to engage in meaningful relationships is similar to their same-aged peers, their HIV status presents genuine implications for the health and well-being of AYA with PHIV, their partners, and society. Understanding the challenges to romantic relationship development may ultimately enhance public health efforts to reduce transmission of HIV, particularly if young AYA with PHIV are able to disclose their status to partners with less distress.

Research suggests that nondisclosure of traumatic or stressful life events can lead to poorer health and emotional strain.⁴³ The focus of education in HIV care settings for AYA living with PHIV must include not only transmission risk factors, but also strategies to develop and maintain healthy relationships in the context of a highly stigmatized illness. Close personal relationships can promote physical and emotional well-being, acting as a buffer to help prevent or reduce the effects of illness.⁴⁴ Support must focus on such salient aspects of healthy relationship development as effective communication and conflict resolution, particularly given the finding that most young adults who participated in this study had encountered rejection at least once after disclosure, and several had never disclosed to a sexual partner due to fears of rejection. Further, it will be important to examine the nature of social networks across particular subgroups of AYA with PHIV. For example, it is possible that young men living with PHIV who have sex with men will have a different experience with disclosure since the gay male community is so familiar with HIV.

The evaluation of interventions designed to support the development of healthy relationships among AYA with PHIV is critical. Longitudinal studies are necessary to examine relationship needs over time, as well as examine the efficacy of interventions. A holistic perspective of development will broaden the discourse about the maturing cohort of AYA with PHIV from describing sexual risk behaviors to supporting them as they move into adulthood, which will in turn, enhance public health efforts to reduce HIV transmission.

Footnotes

Acknowledgments

The authors would like express our deep gratitude to the young people who shared their stories with us. We would also like to thank the Elon University Faculty Research and Development Committee, the Lumen Prize, and the Elon College Fellows program for providing funding.

Author Disclosure Statement

No competing financial interests exist.

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