These qualitative data suggest that HIV-infected patients are increasingly aware of reproductive counseling opportunities. Many participants understood that HCWs may have valuable advice to offer to facilitate safer conception and were open to seeking this advice. While few participants had sought advice, some participants had received safer conception advice from healthcare encounters.
Prior studies suggest that the majority of HIV-infected patients are not receiving reproductive counseling and are reluctant to engage with healthcare workers to discuss reproductive plans [12
]. Schwartz et al. [34
, page 73] presented data collected during 2009 and reported that only 41% of HIV-infected women reported that an “ART healthcare provider had spoken with them about their options should they want to conceive in the future”. In work by Cooper et al., collected in 2006, 19% of women and 6% of men had “consulted a doctor, nurse, or counselor in HIV care about fertility intentions” [38
, page S44]. The fact that many participants, including men, in this small sample knew that HCWs may have advice to offer captures data not mentioned in prior studies. These data suggest that clinical settings may be adapting to accommodate the fertility goals of people living with HIV.
Many participants reported the expectation that they could access detailed counseling if they returned to the clinic when they were ready to have a child. From work by our group and others, several facts of periconception practice make this clinical approach precarious. Waiting to talk to a provider until one is ready to have a child eliminates the opportunity to discuss the risks of having children in order to inform
the decision to have biologic children [24
]. Many men and women living with HIV do not know their partner's status and/or have not disclosed to their partners. Prior to testing and disclosure, it is impossible for an individual or a couple to assess sexual transmission risk in the context of conception. Continued efforts to promote couple-based testing and supported disclosure are critical [54
]. For those who decide to have children, a preconception conversation with a healthcare worker should include an assessment of the HIV-infected partner's health; the HIV status of the partner; if the woman is positive, a discussion of the risks of pregnancy when HIV infected; risks of transmission to a partner with various periconception risk reduction strategies; fertility assessment; the increased risk of transmission and acquisition during unprotected sex during pregnancy; the risks of perinatal transmission [44
Furthermore, asking individuals or couples to return when they are ready to have children presupposes conception planning. However, many pregnancies are not explicitly planned [55
]. Providing up-front information about the options for safer conception may communicate the importance of preconception planning—to protect the future child and the partner. Recent data from Johannesburg (South Africa) suggest high fertility intentions at ART initiation [34
], reflecting the importance of providing safer conception information at treatment initiation and in followup. In addition, decisions about conception are often dyadic. A partner (who is not attending clinic) may make decisions about having children—if his or her partner has not been educated it is impossible for them to have an informed conversation about the risks and options for safer conception. In addition, life transitions may be quick and there may be plans for pregnancy long before a next visit with a provider [57
Expecting a patient to raise the issue of fertility plans on his or her own may be problematic. While not a theme in our data, published data suggest that women and men living with HIV hesitate to reveal fertility plans to HCWs for fear of judgment [36
]. It is not part of routine clinical practice to expect patients to tell providers when they are ready to discuss health behavior change (e.g., smoking, substance abuse, exercise, sexual behavior)—the onus is on the provider to actively inquire about behaviors that compromise health. Routine assessment of fertility goals and plans should be incorporated into clinical care for people living with HIV, with subsequent recommendations for safer conception or effective contraception options, depending on fertility goals. How to execute this in overburdened healthcare systems is a challenge but may require increased training in fertility intention assessment and comprehensive reproductive counseling for counselors.
Participants had learned of safer conception strategies from HCWs including artificial insemination, intercourse timed to peak fertility, sperm washing, home manual insemination, and intercourse with lubrication to avoid abrasions. The frequency with which sperm washing and artificial insemination was raised is interesting since these are some of the least accessible (geographically, economically) strategies for reducing transmission risk. Simpler risk reduction strategies such as delaying conception until the infected partner is on treatment with suppressed HIV RNA viral load, timing sex without condoms to peak fertility, circumcision for the male partner if he is uninfected, and manual insemination are likely to be more feasible. Our semistructured interview guide was not designed to probe specifically about particular techniques and it is possible that participants were more likely to recall discussions about and have faith in high-tech concepts such as sperm washing compared to behavioral modifications such as timing unprotected sex to peak fertility. In addition, patients may have received limited information, perhaps due to insufficient clinician training on this topic. The WHO guidelines for serodiscordant couples offer some safer conception recommendations, in addition, a more comprehensive guideline was recently published by the Southern African HIV Clinicians Society and will be helpful for clinicians [32
]. HCW training on the interpretation and application of these guidelines should be a priority for promoting comprehensive reproductive health counseling.
We found that, in this sample, male participants were eager to engage with HCWs in order to seek reproductive counseling. Prior data suggests that providers may have less insight into male reproductive intentions [31
] and that men are less likely to seek advice from providers [38
]. We previously published on the important role of men in conception decisions from an earlier analysis of these data [33
], an observation which has been reported by others [9
]. As reproductive counseling is integrated into HIV care, it will be crucial to increase male involvement. Interventions to engage men in contraception and family planning have been effective in several sub-Saharan African settings [61
]. In addition, the dyadic nature of conception decisions and periconception risk behavior emphasizes the importance of a couple-oriented counseling approach when feasible [44
The main limitations of the data are inherent to qualitative research—findings from this small qualitative sample are meant to generate hypotheses to pursue in future larger scale research. In addition, our participants were attending clinical services at a semiprivate hospital and may not represent the broader population who access public sector care or those who do not access any healthcare. While this clinic does not have a formal program for safer conception counseling, several of the authors previously worked at this clinic which may have heightened some of the clinic providers' awareness around reproductive counseling for people living with HIV. Finally, patient perspectives of past experiences with provider counseling may not accurately reflect what occurred; provider perspectives are also needed to understand current practices.