Couples Living with HIV

Abstract

Background:

Desires to have children are not lessened by a woman’s HIV status. Couples may lack information to conceive safely, and men may be especially uninformed. This study examined reproductive intentions, practices, and attitudes among men in HIV-infected couples, including attitudes regarding the perceived risk of vertical and horizontal transmission, safer conception, and preconception planning.

Methods:

Men (n = 12) in HIV-infected couples were interviewed regarding reproductive intentions, attitudes, and knowledge and qualitative assessments were coded for dominant themes.

Results:

Themes primarily addressed concerns about the health of the baby, men’s involvement in pregnancy, safer conception, concerns about HIV transmission and antiretroviral therapy, and HIV infection. Men lacked information on safer conception and newer HIV prevention strategies, such as pre-exposure prophylaxis (PrEP).

Discussion:

Gaps in knowledge regarding preconception practices among men in HIV-infected couples were identified. Results highlight men’s desire for involvement in preconception planning, and opportunities for providers to facilitate this practice and to increase patient education and the use of PrEP are discussed.

Introduction

Women’s desires to have children are not diminished by HIV serostatus. ¹ In addition, among HIV-infected women of childbearing age, 26% had experienced at least one unintended pregnancy following their HIV diagnosis, ² suggesting couples may also engage in unprotected sex irrespective of their intentions to conceive. ^3,4 Thus, preconception counseling and patient education represent an important strategy to facilitate pregnancy planning and to reduce the risk of vertical HIV transmission.

Men’s involvement in preconception counseling can enhance pregnancy outcomes and reduce the potential for vertical transmission, dispelling the notion that the burden of responsibility for reproductive planning should fall solely upon women. ^{5 -7} Men have a significant influence on HIV-infected women’s use of contraceptives, their willingness to become pregnant, ⁸ and their desires to have children. ⁹ Yet, despite the potentially beneficial role men can play in reproductive outcomes, preconception counseling programs traditionally target women and provide more opportunities to women to address reproductive issues with their providers, due in part, perhaps, to their more frequent use of health care services. ¹⁰ In addition, though the engagement and involvement of men in childbearing decisions appear to be an important and potentially fruitful area of research, few studies have examined the reproductive desires of men in HIV-infected couples, ^9,11,12 and the unique needs and concerns of men in HIV sero-discordant and sero-concordant relationships remain unclear.

Pre-exposure prophylaxis (PrEP) is an HIV prevention strategy that involves daily use of orally administered antiretroviral medication by individuals who may be at risk of infection, for example, individuals in sero-discordant relationships. However, little is known about the awareness of PrEP among men with HIV-infected female partners, ¹³ in part, as most research among men has focused on men who have sex with men (MSM). ^14,15 Among men, few report familiarity with PrEP, ¹⁶ highlighting the need to assess awareness of PrEP as a tool to prevent HIV transmission. ¹⁷ Additionally, research addressing pregnancy planning is needed to explore men’s knowledge of HIV risk reduction strategies, such as optimal treatment adherence to achieve viral suppression, since existing studies have largely focused on women’s perspectives. ¹⁸

In a pronatalist society such as the United States, childbearing may be perceived as part of the natural progression of the relationship after marriage and may be influenced by familial and cultural pressure on both men and women to conceive. ¹⁹ In couples in which one or both partners are living with HIV, reproductive planning is influenced by multiple challenges, for example, stigma, serostatus disclosure, limited knowledge about conception and HIV, individual health status, and barriers to health care access. Couples may also face HIV-related challenges such as coping with health and medication regimens and the risk of vertical and horizontal transmission. ^{20 -22}

Although such challenges may be mitigated by patient education, consultations between patients and providers addressing preconception planning or safer conception practices (practices allowing conception while reducing the potential to transmit HIV to the sexual partner) may be infrequent, or when they do occur, inadequate. ²³ Given the low rates of HIV-infected women who report being counseled regarding their reproductive options, even while pregnant (42%), ²³ preconception counseling for men in HIV-infected couples may be even less frequent, due in part to their reduced likelihood of accessing health care services. ¹⁰ Additionally, as reproductive planning has traditionally been considered a women’s issue, men’s involvement has remained peripheral, despite the desire of some men to be involved. ^6,24,25 In order to make conception a safer practice for HIV-infected couples and their children, studies are needed to examine how men perceive preconception and perinatal practices and their role in that process.

This study examined reproductive decision making and attitudes among men in HIV-infected couples, including their perceptions regarding the risk of vertical and horizontal transmission, safer conception, and preconception planning. It was theorized that information obtained from this study could enhance protocols for men’s involvement in the preconception counseling process. It was also anticipated that clarifying men’s understanding of safer conception practices could provide a foundation for interventions to prevent vertical and horizontal transmission of HIV during the perinatal period.

Methods

Prior to study onset, institutional review board approval was obtained. HIV-infected heterosexual women were the index participants and were recruited from public and private hospitals in Southern Florida. Eligible women were aged 18–45, heterosexual, sexually active within the past 6 months, non-pregnant, and capable of conception (no history of tubal ligation or hysterectomy). Female study candidates, as the index participants, were screened via telephone or in person to assess eligibility; if women had disclosed their serostatus to their male partners, they were given the option to invite their male partners to attend an individual interview in addition to their own. Participating male partners were provided $30 USD as compensation for time and travel to the site. Men and women were interviewed separately on identical topics.

Interviews

Interviews consisted of open-ended questions and were under 1 hour in duration, with an average time of 17 minutes (range 11–35 minutes). Interviews were held in a private room in the study offices and were digitally recorded; to ensure confidentiality, each recording was coded by participant number. Question stems were developed by the study team using an iterative, collaborative process. Input into questions was provided by the team of health care providers in psychology, obstetrics/gynecology, and infectious diseases and was supplemented by information drawn from informal groups and discussions conducted with relevant hospital staff and patients. Proposed question topics were refined by the team; stems were presented as open-ended questions and time provided to address other issues if they arose. Interviews addressed knowledge, attitudes, and beliefs on (1) fertility intentions and plans (2) knowledge and attitudes about safer conception practices, (3) safer conception counseling experiences with health care providers, (4) perceptions of safer conception counseling by providers, (5) experiences regarding HIV disclosure and sexual coercion, (6) stigma, (7) influences of social networks (eg, family, mothers-in-law, close relatives, friends), cultural mores, and structural barriers to health care.

Audio recordings of interviews were transcribed and coded line by line. The transcriptions were reviewed by three team members for dominant themes; coded information in which coders disagreed on coding were discussed and resolved among team members. Information that fell outside these primary themes was coded as arising themes until no more themes were identified. Themes that arose were primarily about concerns about the health of the baby, men’s involvement in pregnancy, safer conception, concerns about HIV transmission and ART, and HIV infection.

Results

Participants (n = 12) were men, primarily non-Hispanic African American (n = 11, 92% African American; n = 1, 8% Hispanic white). On average, men were 42 years old (SD = 5), whereas their female partners were an average of 39 years old (SD = 5). Sixty-seven percent (n = 8) of the men self-identified as being HIV-infected. All men identified as being in a monogamous relationship with their female partner who invited their participation; two-fifths reported being in a dating relationship, and the other reporting being married. The following excerpts illustrate themes arising from men’s interviews.

Concerns for Health of the Baby

Concerns surrounding pregnancy were predominantly related to the health of the baby. Half of the men (n = 6) believed HIV-infected women and their partners were most concerned that their baby would be infected if the female partner chose to become pregnant, while other men focused on the overall health of their partners. Gaps in knowledge were apparent, for example, one participant reported not knowing his children’s status and appeared to believe that if an HIV-infected woman has a child, the child would suffer more than the mother and live a shorter life.

I got 2 kids with her [partner] but I don’t think they are positive. It ain’t good to have no child if you are positive, it ain’t good for the baby because the baby will suffer more than you; the baby might not live long, the baby might die before you.—Participant 1, sero-concordant relationship

Men’s Involvement in Pregnancy

More than half the men (n = 7) asserted that men actively participate in pregnancy by attending doctor visits. Some (n = 2) participants emphasized that only men who are truly concerned for their partner and baby would be willing to be more involved in the pre- and postnatal period, and that not all men would do so, as noted below.

If the man is really concerned, yes, he’d be there. If he is going to be a concerned father and a concerned mate for that woman, yes. —Participant 2, sero-concordant relationship

Although few participants (n = 2) believed that men would like to attend doctor visits with their female partner during pregnancy, some men asserted they were unable to participate in reproductive health care visits due to different reasons. One participant reported that women may discourage men from attending clinic visits because women may prefer that men focus on work instead, preferring to inform their male partners later of what had occurred during the clinic visit. Another man asserted that the primary deterrent to male involvement was the impression that the clinic environment is not accommodating to men wishing to attend clinic visits with their partner.

We [men] want to go with our significant other after the baby [is] born, but some of them [women] say “I am going to be okay, you just need to go to work,” but they [women] will follow-up on what happened at the OB/GYN.—Participant 2, sero-concordant relationship

No, they [men] don’t have the chance to do that [attend clinic visits with partners], they [women] are not allowed [to have] the partner in with them … the male is left out … we have to wait in the waiting room.—Participant 3, sero-concordant relationship

Some participants (n = 3) believed that men do not have an interest in attending doctor visits with their pregnant partner. Specifically, one reported that he would not feel comfortable in discussing pregnancy and HIV but also indicated that he had no children. Another perceived male involvement to be influenced by a predominant societal perception that men should not be involved in reproductive health care. Similarly, another reported that men are simply not involved in reproductive decision making during pregnancy, as below.

I never had kids, so I never had to do it… I would not feel comfortable participating in discussions about HIV and pregnancy at a women’s clinic visit.—Participant 4, sero-discordant relationship

She’s pregnant, and that’s on her … Some men don’t really care. I know a lot of girls that are pregnant and their man won’t go to the doctor with them.—Participant 5, sero-discordant relationship

Safer Conception

Most men (n = 8) knew of only one method to conceive safely, which was intrauterine insemination, though their knowledge of this method was rather superficial. Most men who described this as a safe method of conception emphasized that it was not affordable to most people. When asked to name some methods of safer conception, by which men would not risk HIV infection or reinfection, none of the men cited the use of PrEP as a method.

Intravenous (sic), where they take the sperm and then just put it into the woman. That would be one of the safest … costly, but safest.—Participant 6, sero-concordant relationship

What’s that thing the doctors do when they just take the sperm from the man and put it in the woman? I forgot what that’s called, but that’s the only way I can think of.—Participant 3, sero-concordant relationship

I really don’t know that much because it was told to me by someone [else]. They [doctors] could take my sperm and inject it in her, and that will cost, you have to have some real good money in order for them to do that procedure.—Participant 2, sero-concordant relationship

Of those men who identified safer conception methods, most (n = 5) asserted that men preferred not to use such methods to conceive. Intrauterine insemination, one man asserted, was unconventional as conception should be a “natural” process, such that conception should occur during sexual intercourse, without devices or special procedures. Two participants indicated that some men and women might not be interested in using this method as a safer conception strategy, and one stated some men would be willing to risk of HIV transmission rather than engage in a safer conception method.

I’m kinda old school, it [intrauterine insemination] is strange… if you can’t do it [have children] the natural way, it can’t be done. —Participant 4, sero-discordant relationship

Artificial [intrauterine] insemination may not be an option most men are interested in. Some men take the risk of becoming infected when having unprotected sex, and if it happens, it happens. —Participant 7, sero-concordant relationship

Some participants (n = 3) could not identify any method of safer conception. One participant reported that despite the couple’s desire to conceive, there were too many unpreventable risks associated with conception with an HIV-infected partner, and he was not aware of any safer method of conception. Of those with no knowledge of a safer method, only one man raised the possibility of speaking with a health care provider to gain information on the topic.

We wanted to have a child, but there are too many risks. I don’t know of any methods.

… they would have to get information from a doctor, to get suggestions on how to go about doing so.—Participant 8, sero-concordant relationship

Concerns about HIV Transmission

Several men (n = 5) were concerned about being infected with HIV by their partner during attempts to conceive. Common misconceptions among those concerned about transmission during conception included the belief that the risk of transmission could not be reduced and that transmission was inevitable, or in two of the participants, that preventing transmission could only be achieved by the female partner.

Yes, men are scared. If you have sex, you will get it. You can’t prevent it.—Participant 1, sero-concordant relationship

The man has to be willing to take the chance that something could happen to him if they [a male and his partner] want to have a baby … but I believe that as long as the woman is taking care of herself, there is a good chance that you [a male] won’t end up like that [infected].—Participant 5, sero-discordant relationship

The inevitability of HIV transmission, even outside the realm of conception, was endorsed by some men (n = 5). HIV infection was anticipated and its acceptance was ascribed to love and overall acceptance of the female partner. In contrast, some men appeared to respond to the risk of transmission by completely denying the possibility.

When I got involved with my partner, I already knew her status. When she was telling me that she doesn’t have kids but would love to have kids, I wasn’t scared. Because I feel like if God put us together, He is not going to let nothing happen to me.—Participant 2, sero-concordant relationship

We act like nothing is going on; we don’t talk about it [HIV] and go out and have sex.—Participant 8, sero-concordant relationship

I was concerned [about becoming infected by a positive partner], but, if you love that person, and that’s the only person you deal with [sexually], so it shouldn’t matter.—Participant 5, sero-discordant relationship

Some men wouldn’t mind if they got infected, ‘cause when I first met my wife, she had it before I did, I told her that if I did catch it, it wouldn’t bother me.—Participant 3, sero-concordant relationship

Antiretroviral Therapy and HIV Transmission

Some participants (n = 4) asserted that HIV is no longer a serious health concern due to antiretroviral therapy (ART). These men appeared to be completely unaware of challenges accompanying HIV infection, such as stigma or medication side effects. In fact, only one man appeared to be aware of the role of ART in reducing viral load and thereby transmission.

The doctor asked what I would do if [I got] infected, [I] said, “you just take meds, you can’t just die while you take meds…. As long as you take your medicine and do what the doctor tells you to do, you could live.—Participant 5, sero-discordant relationship

It’s not like it’s a deadly disease anymore, it’s something that can be managed.—Participant 6, sero-concordant relationship

Some people are scared of getting the virus but say it’s not the end of the world when you have it, the meds will keep you living longer than a healthy person—Participant 2, sero-concordant relationship

Discussion

This study examined reproductive intentions and attitudes among men in HIV-infected couples, addressing their perceptions of the risk of transmission, safer conception practices, and preconception planning. Men’s reproductive decisions were primarily influenced by concerns about the health of the baby and concerns about HIV transmission. As hypothesized, most men lacked information on safer methods to conceive and were unaware of the option of preconception counseling, though most expressed interest in attending clinic visits during pregnancy. Some men appeared to take a fatalistic view of the potential for infection. No men suggested using PrEP as a strategy to prevent infection and few men appeared aware of the impact of ART on preventing HIV transmission.

Results have important implications for involving male partners in women’s preconception and perinatal health care visits. As previously reported, ^6,25 though men expressed interest in attending health care visits, some men did not perceive an opportunity for involvement in the pregnancy health care process. The potential exists for health care providers to consider the benefits of including men in pregnancy planning, conception, and prenatal care, as men can provide an important supportive role in healthy pregnancy, medication adherence, and childbirth. Similarly, when more fully involved in perinatal health care, men can benefit from clarification of the risk of HIV transmission and the impact of HIV on the neonate. Of particular importance is the need for providers to educate men in HIV-infected couples about the benefits of PrEP, especially among those couples attempting to conceive. Previous studies have also identified limited awareness of the use of PrEP to reduce HIV transmission among MSM and high-risk heterosexual women. ^16,26 As men also appeared unaware of the relationship between treatment adherence and reduced HIV transmission, continued education by providers is merited to clarify the importance of mutual or individual adherence to decrease the potential for the development of medication resistance.

Although the majority of men in this study expressed a desire to be involved in preconception practices, some expressed disinterest in being involved or were unsure of being a part of the process. In addition, some expressed concerns regarding being excluded by providers and partners, despite motivation to participate. These findings are consistent with the previous research among men in the general population participating in their partner’s prenatal care, who also reported feelings of detachment from the process. ²⁵ Thus, these findings underscore the need for providers to facilitate opportunities for men in HIV-infected couples to become involved in preconception counseling.

Although some men described active concern about the health of their partner and their baby, others felt that reducing the risk of HIV transmission should be, and was, a woman’s responsibility. This result may have been due, as some men described, to a lack of awareness of alternative strategies to reduce the risk of transmission during conception, though others stated it was not appropriate for men to be involved in issues related to pregnancy. Despite changing sociocultural norms, gendered views still permeate society—the role of women as caregivers and as responsible for contraceptive use and domestic tasks, concomitantly with an overestimation of the importance of men’s roles in contrast to women’s. ²⁷ Men’s responses may imply that women’s responsibilities for conception and contraception makes these responsibilities less important and as such should not be assumed by male partners. In addition, responses may reflect the predominance of African American men in this small sample. Prior studies have suggested that African American men may be particularly vulnerable to the expectation of portraying a “masculine” image that perpetuates such gender roles by favoring aggression, emotional detachment, and fearlessness. ²⁸ In fact, previous research has shown that historical, community, societal, and interpersonal factors may discourage African American men from being involved as fathers. ²⁹ These combined factors may underlie attitudes reflecting disapproval of behaviors traditionally identified as belonging to women—such as being involved in reproductive decision making and health care—that may be perceived as diminishing traditionally “masculine” qualities. ²⁸ Nevertheless, this finding presents an opportunity for providers to inform men of how they may make a unique contribution to reproductive health care that may benefit both men and women. Providing more guidance to men who wish to participate may increase societal acceptance of male involvement among men who may believe that reproductive planning is solely a woman’s issue. ^{5 -7}

While guidelines exist for preconception counseling, male members of couples in this study appeared to have limited knowledge of safer conception, and men often relied on their female HIV-infected partners for information. Although some men were familiar with intrauterine insemination at some level, using what was perceived as artificial methods seemed undesirable, unnatural, or out of reach financially for those who may have been interested. Strategies are needed to provide information to men about safer options for conception that are not limited to women’s health care providers.

In addition, some of the participants expressed little concern about the potential risk for infection, even perceiving it as inevitable for someone with an HIV-infected partner. As noted earlier, cultural and societal norms may promote and even expect high-risk behavior in men, such as fearlessness or sexual risk. ²⁸ These findings are also consistent with more recent studies suggesting that concerns about the risk of HIV transmission have diminished, and individuals may underestimate their risk for infection, or downplay the impact of infection, particularly since the advent of ART. ³⁰

Clearly, men share concerns with their partners for the health of their baby, and some are unclear as to the risk of transmission. Opportunities should be sought to educate men on the prevention of vertical transmission and sexual transmission to partners. Although many men downplayed the risk of HIV, the foundation of this perspective is unclear. Previous studies have identified low levels of concern about infection and a reliance on treatment as a response to infection. ^{31 -34} Although having an undetectable viral load will reduce the risk of transmission, ³⁵ it is unclear that men were aware of their partners’ health status or their use of antiretroviral drugs. Even when aware of the reduced risk of transmission through treatment adherence, knowledge of the importance of adherence to prevent transmission appeared limited. Results support the development of protocols for men’s involvement in preconception counseling with HIV-infected couples to ensure the prevention of both vertical and horizontal transmission of HIV.

Limitations

Generalization of the results of this study is limited by its sample size, although the small, convenience sample provided an in-depth perspective of men’s reproductive decision making. Additionally, study participants were primarily African American; men from culturally diverse backgrounds would likely yield more generalizable results, given that reproductive decision making and practices may vary substantially across cultures and racial and ethnic backgrounds. ^31,36,37 Study results are also limited by reliance on self-reported HIV status; future studies should include rapid testing or verifying HIV status. Similarly, the current study did not assess partner health status such as viral load, the impact of which on sexual risk behavior is unclear. Finally, given that the majority of men in this sample were in sero-concordant relationships, it is possible that perceptions and knowledge of HIV and reproductive decision making among HIV-infected individuals may differ from those of HIV uninfected men in sero-discordant relationships. Men in sero-concordant relationships would likely have been less concerned about the potential for HIV transmission, especially as most couples appeared unaware of the potential for reinfection with different strains of virus. Future research should address knowledge and awareness of the use of PrEP as an HIV prevention strategy among men in sero-discordant relationships.

Conclusion

This study identified gaps in knowledge regarding preconception practices among men in HIV-infected couples. Study results suggest multiple windows of opportunity for providers to bridge these gaps to increase knowledge, enhance safer conception practices, and reduce the risk of vertical and horizontal transmission. ³⁸ Study findings provide a building block for the development of preconception counseling interventions for sero-discordant and sero-concordant couples and underscore the need for a more comprehensive approach to preconception counseling and perinatal care among HIV-infected couples that include male partners.