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. 2021 Mar 25;16(3):e0240990. doi: 10.1371/journal.pone.0240990

“It really proves to us that we are still valuable”: Qualitative research to inform a safer conception intervention for men living with HIV in South Africa

Lynn T Matthews 1,2,*, Letitia Greener 3,4, Hazar Khidir 5, Christina Psaros 6, Abigail Harrison 7, F Nzwakie Mosery 3, Mxolisi Mathenjwa 3, Kasey O’Neil 2, Cecilia Milford 3, Steven A Safren 8, David R Bangsberg 9, Jennifer A Smit 3
Editor: Kristin Dunkle10
PMCID: PMC7993862  PMID: 33765001

Abstract

Objective

Many men living with HIV want to have children. Opportunities to reduce periconception HIV transmission include antiretroviral therapy as prevention, pre-exposure prophylaxis, limiting condomless sex to peak fertility, and sperm processing. Whether men have knowledge of or want to adopt these strategies remains unknown.

Methods

We conducted focus group discussions (FGDs) with men accessing HIV care in South Africa in 2014 to inform a safer conception intervention for men. Eligible men were 25–45 years old, living with HIV, not yet accessing treatment, and wanting to have a child with an HIV-negative or unknown serostatus female partner (referred to as the “desired pregnancy partner”). FGDs explored motivations for having a healthy baby, feasibility of a clinic-based safer conception intervention, and acceptability of safer conception strategies. Data were analyzed using thematic analysis.

Results

Twelve participants from three FGDs had a median age of 37 (range 23–45) years, reported a median of 2 (range 1–4) sexual partners, and 1 (range 1–3) desired pregnancy partner(s). A third (N = 4) had disclosed HIV-serostatus to the pregnancy partner. Emergent themes included opportunities for and challenges to engaging men in safer conception services. Opportunities included enthusiasm for a clinic-based safer conception intervention and acceptance of some safer conception strategies. Challenges included poor understanding of safer conception strategies, unfamiliarity with risk reduction [versus “safe” (condoms) and “unsafe” (condomless) sex], mixed acceptability of safer conception strategies, and concerns about disclosing HIV-serostatus to a partner.

Conclusions

Men living with HIV expressed interest in safer conception and willingness to attend clinic programs. Imprecise prevention counseling messages make it difficult for men to conceptualize risk reduction. Effective safer conception programs should embrace clear language, e.g. undetectable = untransmittable (U = U), and support multiple approaches to serostatus disclosure to pregnancy partners.

Introduction

In sub-Saharan Africa, up to 60% of new infections occur in stable, HIV-serodifferent partnerships, in which both partners often place great value on having children [17]. HIV-uninfected women who conceive with a partner living with HIV face HIV acquisition and perinatal transmission risks, highlighting the importance of periconception counseling for men living with HIV (MLWH) to prevent transmission [812]. Antiretroviral treatment (ART), pre-exposure prophylaxis (PrEP), limiting condomless sex to peak fertility, and sperm processing are effective HIV prevention strategies for HIV-serodifferent couples wherein the male partner is living with HIV and they want to have a child [13].

While MLWH control many reproductive decisions, they rarely receive safer conception advice [3, 1419]. Studies show that more than half of men living with HIV entering the care system want children with their current partners, and men’s reproductive goals are important aspects of their social, cultural, gender, and family dynamics [4, 11, 2022]. Delivering safer conception messages to men addresses sexual power imbalances to promote HIV prevention and is consistent with a UNAIDS call for “a global shift in the discussion on HIV and gender—that it should become more inclusive of men…[23].”

Based on our formative work in KwaZulu-Natal, South Africa, we designed a “healthy baby” intervention to support MLWH to adopt HIV risk reduction behaviors to keep partners, and therefore their children, HIV-uninfected [24]. We conducted focus group discussions (FGDs) with MLWH wanting to have a child in the next year with a partner of unknown or HIV-negative serostatus in order to solicit their input into the healthy baby intervention. Here we describe insights into the feasibility and acceptability of a healthy baby or safer conception intervention for men. While these data were collected in 2014, men living with HIV remain a largely unreached population, their reproductive goals are not yet integrated into HIV care and we believe these data remain relevant to understanding the needs and considerations of men living with HIV in South Africa in 2020.

Methods

Description of study site

We recruited participants from an NGO/Department of Health (DoH) collaborative healthcare facility based in a large township in eThekwini, KwaZulu-Natal, South Africa.

Selection of participants

HIV-positive men aged 20–45, with knowledge of their HIV-serostatus for at least 6 months, currently receiving care, not on ART, and interested in having a child in the next year with a stable partner of HIV-negative or unknown serostatus (referred to as the “desired pregnancy partner” in this manuscript) were eligible to participate. Participants were recruited and focus groups were conducted in July and August 2014. At that time, people living with HIV (PLWH) with CD4 count greater than 350 cells/mm3 were not eligible for treatment per South African DoH guidance [25]. Potential participants were recruited at a facility based in KwaZulu-Natal using convenience sampling and were screened based on eligibility criteria.

Data collection

FGDs were employed to explore group insights and community norms regarding intervention content. Each FGD comprised 3–5 men, was conducted in isiZulu and audio-recorded. The FGD guides were semi-structured, informed by prior qualitative studies [1517] and designed to explore: motivations for having a healthy baby, partnership dynamics and feasibility of engaging partners in a safer conception intervention, knowledge of and acceptability and feasibility of safer conception strategies available in the public sector, and the logistics of participating in a clinic-based safer conception intervention. The safer conception methods were described through images and a narrative (Fig 1) developed for a prior study and adapted to this setting through input from the study team, local clinic staff, and peer counselors [26]. The methods described included timing condomless sex to peak fertility, “early” ART (FGDs were conducted when national guidelines recommended treatment based on CD4 count <350 and WHO clinical stage), and PrEP (FGDs were conducted prior to local PrEP roll-out, after PrEP was recommended for persons at risk for HIV by the CDC and prior to recommendations for use by serodifferent couples from the WHO.) Sperm washing was not described because it is not available in the public sector in South Africa. However, it was discussed in each FGD session. A brief questionnaire captured socio-demographic information, sexual behavior, and fertility desires.

Fig 1. Images and script describing timed condomless sex, anitretrovirals, and PrEP for FGDs.

Fig 1

Box 1 contains the narratives used to share information with participants about the various safer conception strategies to reduce sexual transmission between male-positive HIV-serodifferent couple while allowing for conception. Images accompanied each narrative. Images and narratives were developed in close consultation with the clinical and research teams based in South Africa. Questions embedded throughout the narratives to encourage discussion are removed from this appendix. Figures used to illustrate narratives: (A) ART as prevention, (B) PrEP, (C) Timing sex without condoms to peak fertility. Figures used to illustrate narratives (Reprinted under a CC BY license, with permission from Asha Pieper, original copyright 2015).

Box 1. Narratives

I want to share with you some of the safer conception strategies that are available and ask your opinions about whether these could work for HIV-infected men here in [place name]. Let’s say that Sipho is an HIV infected man and he wants to have a child with his partner Naledi. Naledi does not have HIV, and one of the ways to make sure Sipho has an uninfected baby is to protect Naledi from HIV.

Naledi is more likely to get pregnant during particular times in her menstrual cycle. One way to reduce the risk of transmitting HIV to Naledi while trying to get pregnant is to use condoms most of the time. But when Naledi is most fertile, the couple can have sex without condoms to try to conceive. This method is known as “timed intercourse” and can be used to reduce the risk of HIV transmission between partners, while still allowing the woman to become pregnant.

If Sipho is started on antiretrovirals (ARVs) and takes his pills every day, the level of HIV virus in his blood will be very low. When the HIV virus in his blood is low, it is unlikely that Sipho can transmit the virus to Naledi or to their baby. This is sometimes called treatment as prevention.

Another option, which is still being studied, would be for Naledi–who is uninfected–to take a kind of ARVs called PrEP or pre-exposure prophylaxis. With PrEP, an HIV-negative partner with an HIV-positive partner can take certain ARVs in order to reduce the chances of getting HIV. Doctors are still studying whether this method works and how PrEP might be used for couples who want to have a baby.

Data analysis

FGD audio-recordings were transcribed and translated into English. The transcripts were independently read by three researchers who worked together with the focus group discussion leaders to develop a codebook. The coding was conducted by three researchers and analyzed using an iteratively-developed codebook to explore emergent themes using thematic analysis [27]. Emergent themes were summarized, then discussed and refined by the team and compared for consistency and discrepancies. Discussion of themes facilitated the identification of connections between the research questions, coding categories, and raw data. Quantitative data from the questionnaires are described using median (range) and number (%).

Ethics statement

Ethics approvals were obtained from the University of the Witwatersrand (Johannesburg, South Africa) and Partners Healthcare (Boston, MA). Healthcare facility support was obtained and participants provided written, voluntary informed consent.

Results

Sixty-nine men accessing HIV care were approached, 18 were eligible, and 12 consented and participated. Principal reasons for ineligibility were HIV-serostatus known for less than six months and reporting a pregnancy partner living with HIV. Six eligible men who did not participate in FGDs had scheduling conflicts due to employment. Median age of enrolled participants was 37 years, 75% were employed, and nearly half did not know the HIV-serostatus of their intended pregnancy partner (or the woman identified as the person with whom they hoped to have a child in the next year) (Table 1).

Table 1. Participant demographics.

N = 12
Median (min-max) Number (%)
Age, years 37 (23–45)
Employed 9 (75%)
Number of children 3 (0–6)
Identified one pregnancy partner 11 (92%)
Length of relationship, years 3 (1–13)
HIV-status of an intended pregnancy partner (N = 13)
    Negative 7 (54%)
    Positive 1 (8%)
    Unknown 5 (38%)
Disclosed HIV-serostatus to an intended pregnancy partner 4 (31%)
Condom use at last sex (with 13 intended pregnancy partners) 11 (85%)

Emergent themes from the data are organized into opportunities and challenges that men identified for participating in a clinic-based safer conception program. Opportunities included enthusiasm for a safer conception program that would give men hope to continue living their lives and contribute to society as fathers and the acceptability of treatment as prevention and PrEP as safer conception strategies. Challenges included limited knowledge of safer conception strategies, poor understanding of “risk reduction”, a desire to avoid long-term exposure to ART, and fear of serostatus disclosure to pregnancy partner(s) leading to relationship dissolution.

A. Opportunities for safer conception services for men

1. An intervention to help men have a healthy baby allows men to live their lives and contribute to society. Men expressed enthusiasm for a safer conception program for men.

Participant 10 (P10): “That is exactly what pushed me to come here today….. If there is anything that I can use as an infected person, or anything that could protect my partner from getting infected if we engage in unprotected sex. Or perhaps something that I can use before I have sex with her. … We cannot have a baby if we use condoms.” -FGD3

Few participants felt they could discuss reproductive goals with healthcare providers or their partners. Further, many had never heard of “safer conception”–or opportunities for conceiving a child with reduced HIV transmission risk to partner. Men noted that having a healthy baby would allow them to live, find hope, and be ‘valuable’ members of their community, family, and society. Their descriptions suggest the potential for safer conception care to ameliorate HIV-related stigma.

P9: “Today’s discussion created an image … that shows that life goes on for men. And that there are still medical personnel who are trying that our partners do not get infected and that if we still want to have babies, there are methods that we need to follow so that we can have healthy babies even if we are in this situation.

P10: Being in this situation of being HIV positive, you end up losing hope. … So the presence of these programs and this research … Because it really proves to us that we are still valuable, there are things that are planned for us even though we are in this situation.”–Exchange from FGD3

2. Treatment as prevention and PrEP are feasible safer conception strategies. When the moderator described safer conception strategies (Fig 1), men identified possible benefits to adopting these strategies.

A few men expressed that “early” ART initiation would be a feasible strategy to promote their health, protect their partner from HIV, and ultimately have an uninfected child.

P7: “I commend this method, because it covers both issues simultaneously. It protects her from getting infected, at the same time she can get a baby. […]

P5: Yes I also commend this method of starting treatment earlier so that the viral load can be low and increase chances of not infecting your partner easily.”–Exchange from FGD2

Some felt that partner support, including her knowledge of the man’s HIV serostatus, would be a strong motivator to initiate and adhere to treatment by enhancing social support and decreasing the need for secrecy.

P10: “[S]he would know the reason behind me starting treatment early. If she is also positive about the reason for me to start treatment earlier, I do not think it would be a problem.” -FGD 3

Some men were enthusiastic about the idea of PrEP as prevention for the partner, although the assumptions they make about partner enthusiasm may have limited validity.

P3: “I think my partner has to feel alright because this method helps her not to get the virus.[…] I do not think she can have a problem with it because I think she also does not want to be infected.” -FGD1

In each of the FGDs, men found limiting condomless sex to peak fertility compelling but quickly realized that this strategy would not be feasible without serostatus disclosure.

P5: “Yes, it would work for someone who is brave [enough] to talk with his partner [and] disclose his status early…because she would want to know, ‘Why are we not using a condom today after we have been using it all along? … So why don’t we engage in unprotected sex all the time?,’ then you have to explain.”–FGD2

Men expressed that while these methods were mostly unfamiliar, they and their partners were trusting of information coming from within the healthcare system.

B. Challenges for safer conception services for men

3. Poor understanding of safer conception techniques and the concept of risk reduction

In each FGD, methods to prevent perinatal transmission from a mother living with HIV were raised by participants as “healthy baby” strategies.

P5: “I know that the mother of the baby consumes a pill when she is closer to giving birth, which will protect the baby from being infected.”–FGD2

When men were encouraged to think of ways to protect a partner from HIV while conceiving a child, they described sperm washing, in vitro fertilization, and donor sperm as strategies they had heard of but did not know how to access.

P10: “Perhaps the little information that I have is that my sperm is taken and inserted into the female so that the woman can conceive. I am not sure what that is called. …”–FGD3

Additional strategies such as ART for the infected partner, PrEP for the uninfected partner, limiting condomless sex to peak fertility were not familiar. Men were unfamiliar with the concept of risk reduction, expressing that condom use was 100% effective and that methods to reduce transmission risk in the absence of condoms were unlikely to protect a partner from acquiring HIV. In this example, a participant expresses skepticism about ART-mediated HIV-RNA suppression.

P2: “It [the virus] is there but it is lowered, it never gets completely washed away. Eish chances of her not getting infected are very low man, they are very low because it is there.”—FGD1

4. Barriers to uptake of safer conception strategies: desire to avoid ARVs, doubts of efficacy

Men described strong desires to avoid antiretrovirals, as treatment for prevention. Starting ART was seen as contrary to what had been advised by providers (at the time of these interviews the guidelines did not recommend treatment for asymptomatic PLWH with CD4 cell counts above 350), was a ‘forever’ commitment, and associated with worse health. Men believed ‘healthy living’ could maintain a high CD4 count and suppress HIV RNA without initiating ART.

P1: “But the moment you start on treatment it means your health is not stable. […] I am not prepared to start on treatment. […] What I am prepared to do which is what I was told … to eat healthy food, exercise, that is exactly what makes your CD4-count to be high.”–FGD1

P9: “Personally, I think if I could wait until the viral load decreases on its own without having used the pills. … because pills are not something that I like.”–FGD3

Men had reservations about uptake of an investigational (at the time of these discussions) strategy such as PrEP. The idea of taking medication was again associated with ill health and some men expressed concerns that a healthy partner would not want to take a daily prophylactic medication.

P7: “I do not think she would agree, to take medication when she is not sick.”–FGD2

Men also explained that partners might not understand that HIV-RNA suppression would keep them protected from HIV.

P6: “Women do not consider how high or low the viral load is in your body, if there is sign of being ‘positive’. They only consider being positive or negative, they do not care about how high or low the viral load is.”–FGD2

5. Feasibility of disclosure in order to implement safer conception strategies: Challenges of HIV-serostatus disclosure to partner

Men identified disclosure as a critical part of implementing safer conception strategies.

P9: “What I would mention as challenges would be … it is that a person would know his status while not knowing his partners’ status, so he might be scared to attend such meetings, then his partner would ask what is about and what you are doing there. Because males, in most cases, they hide their status.”–FGD3

Men described an environment that made it difficult to imagine disclosing serostatus and expressed lacking knowledge on how to approach disclosure.

P5: “I am afraid of telling my partner, I do not know how I can do that. I planned that I will never tell her”.

P7: “It is difficult to disclose to your partner if you are positive and your partner is negative. You just do not know how you can start telling her that.”–FGD2

Participants described challenges to disclosing due to fears of relationship dissolution and stigma.

P2: “There is that fear that you might lose her, so it is hard. … I won’t lie, my sister. Even now I do not know how I can break the ice. I don’t know, because I think if I tell her my status she will leave me…. I am hesitant because I am scared.” -FGD1

While most of participants were anxious about HIV-serostatus disclosure to a partner, they identified the healthcare system as a place to assist people living with HIV who need support to disclose:

P4: “Visiting clinics is what can help them. […] They should go as a couple. They should not go one by one. Because even to us coming here alone, then telling our partners, is a big problem. It would be better if both are on the same page so that there could be an understanding.”—FGD2

Despite barriers to disclosure identified in each discussion group, there were some positive examples of disclosure by men.

P9: “I couldn’t keep it as a secret and I decided to tell my partner, even though it is not easy to tell people. And I told her, she accepted, and she said “okay” and she understood. Life goes on, even when it comes to what my fellow brothers were talking about makes sense and we are moving forward and I will be able to have a baby, … Speaking out helps.”–FGD3

Discussion

Men are eager for services to support their reproductive goals [17, 19, 21, 28]. Participants in this study, men living with HIV, engaged in care and not yet accessing ART, were eager to access safer conception services and maintained that other men in their communities would be interested. Mixed acceptability of the safer conception strategies suggests the importance of method choice [13, 20, 21]. Given that fewer than a third of men had disclosed their serostatus to their desired pregnancy partners and all FGDs identified numerous barriers to serostatus disclosure, our findings highlight the importance of and challenges to supporting HIV-serostatus disclosure and communication within safer conception care.

MLWH are less likely to engage and remain in care, suppress HIV-RNA, and survive compared to women [2932]. The enthusiasm expressed by men suggests that offering men comprehensive reproductive healthcare may be a novel patient-centered strategy to help them engage in HIV care and treatment services, suppress HIV-RNA and live longer, healthier lives. Ongoing calls for promoting equitable care for men who have sex with women highlight the need to create care that supports the needs of men as well as women in order to meet important 90-90-90 and 95-95-95 targets [33, 34]. Providing services to men may promote disclosure and also engage HIV-exposed women into HIV prevention services. This is supported by the first demonstration project of safer conception services in South Africa wherein all men (N = 192) participated with their pregnancy partners in a counseling intervention based in Johanneburg [35, 36]. However, recruiting men to attend FGD sessions at a fixed time was challenging given commitments, mostly related to keeping or seeking employment and highlight one of the challenges to engaging men in a facility-based program with traditional hours [37, 38].

Men have low knowledge of how to reduce periconception HIV transmission. In spite of safer conception guidelines in South Africa, providers rarely counsel people living with HIV, especially men [15, 16, 39, 40]. PLWH do not ask about options for pregnancy for many reasons, including sensing that providers are not supportive of their reproductive goals and stigma towards PLWH having children [4, 16, 40]. The basic tenets of safer conception (e.g. delay conception attempts until HIV-RNA is suppressed, PrEP for uninfected partners) should be offered to all PLWH rather than limited to those who identify as planning to have a child [13]. This aligns with broader treatment as prevention goals in South Africa and globally to promote viral suppression for all people living with HIV as a key strategy to improve health and prevent ongoing transmission.

When we described the motivation for a “healthy baby” intervention and the different safer conception methods, men found the principles of safer conception compelling, with mixed acceptability. This is consistent with data from other studies in South Africa [20, 41] and illustrates the importance of method choice (e.g. ART for the infected partner may not be the right choice for everyone) [42]. A safer conception intervention will likely require several sessions given the information gaps and may require creative approaches to education [43]. Implementation programs are needed to assess the methods which individuals and couples are likely to use and what support they will need to do so successfully [42, 44]. In addition, since these focus groups were conducted, the data that undetectable is untransmittable (U = U) have grown substantially [45, 46]. While our data precede U = U messaging and universal test and treat policy in South Africa, surveys suggest a lag in communicating these messages to people living with and at-risk for acquiring HIV [47, 48] and leading advocates and health services researchers urge for clear language to convey the zero transmission risk associated with viral suppression [49]. Clearer, patient-centered messages would address the challenges that men described in understanding more conservative language about risk reduction. In addition, Universal Test and Treat (UTT) strategies highlight ongoing challenges of HIV care for men [5054]. In South Africa, UTT implementation was followed by increases in women accessing ART, leading to HIV incidence declines for men while women remain at high risk for infection [5557] suggesting that the lessons we can learn from this work remain relevant. Recent calls for gender equity that includes men more purposively in healthcare in South Africa highlight the importance of male-friendly services [33, 34].

While fewer than a third of participants had disclosed their HIV status to their pregnancy partner, through the discussions men concluded that disclosure would be an important part of safer conception while acknowledging the challenges with this important step. Mutual disclosure depends on both partners undergoing HIV counseling and testing (HCT) and sharing their results or completing couples-based counselling and testing (CHCT) together. HCT uptake in South Africa remains low, especially among men [5860]. CHCT is not widely available in South Africa [61]. CHCT and other strategies to test partners (e.g. self screening [62]) are critical to promote uptake of ART for partners living with HIV and PrEP for those who remain uninfected with ongoing HIV exposure. Framing disclosure and CHCT within a holistic approach that focuses on building healthy families may support couples to overcome barriers to disclosure, and testing of this hypothesis is ongoing [24, 63]. In the meantime, it is important to offer safer conception counseling, education and support to individuals as well as mutually-disclosed couples [64, 65].

Men expressed trust in the healthcare system and anticipated that their partners would also trust information delivered in the clinic. Men simultaneously expressed difficulty navigating discussions about reproductive goals with providers; highlighting the need for healthcare staff who have skills to support MLWH to explore and initiate safer conception strategies [40]. A client-centered, peer-based approach that allows for the flexibility of one-on-one as well as couples based interactions may enhance support and reduce potential anxieties around new methods may provide support, empathy and affirmation of reproductive goals among MLWH. Many of the barriers that men identified to implementing safer conception strategies were wrought with anxiety (e.g. would HIV RNA suppression really protect a partner in the setting of condomless sex?) and fear (e.g. a lifelong commitment to ART, disclosure to partner). In order to overcome these barriers, a cognitive behavioral approach that provides information, assesses motivation, and employs problem-solving to address barriers to implementing safer conception strategies may be an effective means of supporting men to consider, adopt, and adhere to safer conception strategies [66].

The limitations of this study generalize to qualitative research–a small sample size means results are meant to generate hypotheses for future research. The discussions were conducted prior to implementation of test and treat policies–so negative attitudes towards treatment as prevention may have since lessened. We had particular challenges recruiting men for this study–highlighting the challenges of engaging men in clinic-based studies. The discussion groups were small, but the men shared rich data which aligns with findings from other work [17, 24, 67]. Smaller groups may have promoted more open discussion about a controversial topic [68]. Men who participated in our FGDs participated in 2014 and had a particular interest in this topic and may not reflect the views of all men in the community. However, given the enthusiasm for engaging men in HIV care and reproductive health and the paucity of data about how to do so, these limited data remain important to disseminate to inform future studies [23, 69, 70].

These data suggest that men are eager to engage in safer conception care. Integrating effective combination HIV prevention into comprehensive reproductive health programs for men and women living with HIV provides an opportunity to reduce periconception HIV-transmission risk, support the reproductive rights of men and women living with and affected by HIV, while promoting the health of men, their partners, and their families [13].

Supporting information

S1 File. Safer conception men FGD guide.

(PDF)

Data Availability

The informed consent document for this study does not allow for us to make the qualitative data (collected from a small sample of men) publicly available. Data access requests for elements of raw data may be sent to the UAB Center for Clinical and Translational Science via CCTS@uab.edu; primary study authors may also be contacted.

Funding Statement

This work was supported by National Institutes of Health (NIH, https://urldefense.proofpoint.com/v2/url?u=http-3A__www.nih.gov&d=DwIGaQ&c=o3PTkfaYAd6-No7SurnLt5qpge1aKYwPQyBFS7c8AA0&r=gogn30blU2aosnJjpi727b9K-qufLi2BKLsFiLaeo_U&m=86VO_njWvYfHhG-1S2zTCw2keBxdMZiKedjcrviJsKo&s=4cB5P8jmZRi23kr3nk3zngI9MgCA2hQ_fGdAPBnYJps&e=) awards R34 (MH100948) (LTM), K23 (MH095655) (LTM), K23 (MH096651) (CP), K24 (MH087227) (DRB), K24 (MH094214) (SS), as well as the Harvard CFAR P30 (AI060354) (LTM). This work does not necessarily reflect the opinions of the NIH. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

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Decision Letter 0

Kristin Dunkle

24 Jun 2020

PONE-D-20-04292

“It really proves to us that we are still valuable”:  Qualitative research to inform a safer conception intervention for men living with HIV in South Africa

PLOS ONE

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Reviewer #1: N/A

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Reviewer #1: No

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Reviewer #1: Yes

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Reviewer #1: The authors conducted a qualitative study using FGDs to gather data to use to inform a safer conception intervention for men living with HIV. This is an important area of research as there is urgent need for evidence-based strategies for linking and retaining men in HIV care in South Africa.

The manuscript is well-written and reads very well! I commend the authors for producing such a well-written paper. However, I have a couple of comments and suggestions that I hope the authors will consider in strengthening this paper.

METHODS

Page 6, line 37: Authors describe that 'Each FGD comprised 3-5 men, was conducted in isiZulu and

audio-recorded'. The number of men participating in each FGD were very small. I would like the authors to justify the acceptability of this in qualitative research as ideally the number of participants in a FGD should be higher than this. Furthermore, could the authors comment on whether this limited or strengthened the quality and or richness of the data gathered in this study?

RESULTS

While the findings are well presented, my view is that they were particularly descriptive, and lacking the depth that one would expect from a qualitative paper in which data was analysed using thematic analysis. Could the authors comment on this?

From reading the findings of this paper, some of the data presented in the manuscript support my view that the findings of this study are outdated and not relevant to where the HIV field is now in South Africa, especially with regards to UTT. For example, the two extracts presented on p14 line 168 and line 172 clearly point to the time when UTT had not been introduced in South Africa. While the authors have mentioned this in the limitations section of the paper, I would like the authors to provide a strong justification of the relevance and significance of these findings and their contribution to knowledge. Said in another way, could the authors highlight how this paper, if published, would advance knowledge on how to link and retain men in HIV care in South Africa and similar settings.

Thank you.

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Reviewer #1: Yes: Yandisa Sikweyiya

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PLoS One. 2021 Mar 25;16(3):e0240990. doi: 10.1371/journal.pone.0240990.r002

Author response to Decision Letter 0


14 Aug 2020

The information below is easier to read in teh uploaded response to review due to formatting. However, the response is also here.

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Response. We have uploaded the form described in 1.1. We have added the text for Figure 1, including copyright year.

3. Please include copies of the focus group discussion guide(s) used in the study, in both the original language and English, as Supporting Information, or include a citation if they have been published previously.

Response. These are now included and referred to as supporting information in the text.

4.In your Data Availability statement, you have not specified where the minimal data set underlying the results described in your manuscript can be found. PLOS defines a study's minimal data set as the underlying data used to reach the conclusions drawn in the manuscript and any additional data required to replicate the reported study findings in their entirety. All PLOS journals require that the minimal data set be made fully available. For more information about our data policy, please see http://journals.plos.org/plosone/s/data-availability.

Upon re-submitting your revised manuscript, please upload your study’s minimal underlying data set as either Supporting Information files or to a stable, public repository and include the relevant URLs, DOIs, or accession numbers within your revised cover letter. For a list of acceptable repositories, please see http://journals.plos.org/plosone/s/data-availability#loc-recommended-repositories. Any potentially identifying patient information must be fully anonymized.

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Response. These data were collected prior to the movement towards public sharing of qualitative data. The informed consent signed by men who participated in this study noted (bolding added for current purposes and not in signed ICF):

“You will be asked to allow the facilitator to digitally record the focus group discussion, so that the study staff can make sure that it is being carried out correctly and that they understand what is being said by participants. Each digital recording will be transcribed, and all recordings will be erased within two years of publication of study findings, or if there is no publication, no later than six years after the study has ended. Information from the recordings/disks may be presented at professional meetings or in written articles, in which case no names or other personal identifiers will be used.

Digital recording is a requirement for study participation. The focus group discussion will be confidential; it will be identified only by a unique number assigned to you, and no individual names will appear on the audio file or the transcript of the focus group discussion. No one, except the researchers, will have access to the audio file or the transcript of the focus group discussion. You can decide to withdraw from the focus group discussion at any time. If you do not want the focus group discussion to be digitally recorded, you are not eligible to participate in the research study.”

Based on this ICF we do not have permission from the participants to make the full transcripts publicly accessible. We are unable to reach the men to ask for additional permissions at this time. We would be able to carefully redact and share portions of the dataset (not full transcripts given the signed consent documentation) with interested researchers with specific requests to the study authors.

5. Review Comments to the Author

Reviewer #1: The authors conducted a qualitative study using FGDs to gather data to use to inform a safer conception intervention for men living with HIV. This is an important area of research as there is urgent need for evidence-based strategies for linking and retaining men in HIV care in South Africa.

The manuscript is well-written and reads very well! I commend the authors for producing such a well-written paper. However, I have a couple of comments and suggestions that I hope the authors will consider in strengthening this paper.

METHODS

Page 6, line 37: Authors describe that 'Each FGD comprised 3-5 men, was conducted in isiZulu and

audio-recorded'. The number of men participating in each FGD were very small. I would like the authors to justify the acceptability of this in qualitative research as ideally the number of participants in a FGD should be higher than this. Furthermore, could the authors comment on whether this limited or strengthened the quality and or richness of the data gathered in this study?

Response. Thank you for this comment. We aimed to conduct focus group discussions with larger groups of men, however attendance was limited. We believe that the small numbers highlight the challenges of conducting research with this population and while the small sample size is a weakness, the men who did attend were engaged and shared rich data. In addition, their comments were aligned with what men living with HIV communicate about these topics in our other datasets and thus we do not think the size of the focus groups limited the relevance of the information collected. We have added more discussion re. the sample size to the discussion.

RESULTS

While the findings are well presented, my view is that they were particularly descriptive, and lacking the depth that one would expect from a qualitative paper in which data was analysed using thematic analysis. Could the authors comment on this?

Response. We agree. The focus groups were designed to solicit feedback on the intervention we were designing. FGDs explored motivations for having a healthy baby, feasibility of a clinic-based safer conception intervention, and acceptability of safer conception strategies. We had already conducted open ended in depth interviews with men affected by HIV in prior research. Therefore the questions in this discussion guide were slightly more focused and as such the analysis is a bit more descriptive. However, given this important comment, we have re-organized the analysis somewhat so that some of the more thematic elements of the analysis are clearer in the Results.

From reading the findings of this paper, some of the data presented in the manuscript support my view that the findings of this study are outdated and not relevant to where the HIV field is now in South Africa, especially with regards to UTT. For example, the two extracts presented on p14 line 168 and line 172 clearly point to the time when UTT had not been introduced in South Africa. While the authors have mentioned this in the limitations section of the paper, I would like the authors to provide a strong justification of the relevance and significance of these findings and their contribution to knowledge. Said in another way, could the authors highlight how this paper, if published, would advance knowledge on how to link and retain men in HIV care in South Africa and similar settings.

Response. We have added additional text highlighting that in the current era of UTT and TASP there remain glaring gaps in HIV care engagement and retention for men. There are no data in the literature to suggest progress in terms of men’s ability to disclose to partners. A recent (published while working on this response) JIAS supplement focused entirely on the gaps of engaging men who have sex with women in care and largely on the South African setting – we have cited some of this work. We believe our findings continue to speak to the need for patient-centered care for men in South Africa and the possibility for addressing men’s reproductive goals to address this HIV care and treatment and partners serostatus disclosure for men.

Decision Letter 1

Kristin Dunkle

24 Sep 2020

PONE-D-20-04292R1

“It really proves to us that we are still valuable”:  Qualitative research to inform a safer conception intervention for men living with HIV in South Africa

PLOS ONE

Dear Dr. Matthews,

Thank you for submitting your manuscript to PLOS ONE. After careful consideration, we feel that it has merit but does not quite meet PLOS ONE’s publication criteria as it currently stands. Therefore, we invite you to submit a revised version of the manuscript that addresses minor points raised during the review process. Please see the additional and helpful feedback from the new reivewer.

Please submit your revised manuscript by Nov 08 2020 11:59PM. If you will need more time than this to complete your revisions, please reply to this message or contact the journal office at plosone@plos.org. When you're ready to submit your revision, log on to https://www.editorialmanager.com/pone/ and select the 'Submissions Needing Revision' folder to locate your manuscript file.

Please include the following items when submitting your revised manuscript:

  • A rebuttal letter that responds to each point raised by the academic editor and reviewer(s). You should upload this letter as a separate file labeled 'Response to Reviewers'.

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If you would like to make changes to your financial disclosure, please include your updated statement in your cover letter. Guidelines for resubmitting your figure files are available below the reviewer comments at the end of this letter.

If applicable, we recommend that you deposit your laboratory protocols in protocols.io to enhance the reproducibility of your results. Protocols.io assigns your protocol its own identifier (DOI) so that it can be cited independently in the future. For instructions see: http://journals.plos.org/plosone/s/submission-guidelines#loc-laboratory-protocols

We look forward to receiving your revised manuscript.

Kind regards,

Kristin Dunkle

Academic Editor

PLOS ONE

[Note: HTML markup is below. Please do not edit.]

Reviewers' comments:

Reviewer's Responses to Questions

Comments to the Author

1. If the authors have adequately addressed your comments raised in a previous round of review and you feel that this manuscript is now acceptable for publication, you may indicate that here to bypass the “Comments to the Author” section, enter your conflict of interest statement in the “Confidential to Editor” section, and submit your "Accept" recommendation.

Reviewer #1: (No Response)

Reviewer #2: (No Response)

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2. Is the manuscript technically sound, and do the data support the conclusions?

The manuscript must describe a technically sound piece of scientific research with data that supports the conclusions. Experiments must have been conducted rigorously, with appropriate controls, replication, and sample sizes. The conclusions must be drawn appropriately based on the data presented.

Reviewer #1: (No Response)

Reviewer #2: Yes

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3. Has the statistical analysis been performed appropriately and rigorously?

Reviewer #1: (No Response)

Reviewer #2: Yes

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4. Have the authors made all data underlying the findings in their manuscript fully available?

The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified.

Reviewer #1: (No Response)

Reviewer #2: Yes

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5. Is the manuscript presented in an intelligible fashion and written in standard English?

PLOS ONE does not copyedit accepted manuscripts, so the language in submitted articles must be clear, correct, and unambiguous. Any typographical or grammatical errors should be corrected at revision, so please note any specific errors here.

Reviewer #1: (No Response)

Reviewer #2: Yes

**********

6. Review Comments to the Author

Please use the space provided to explain your answers to the questions above. You may also include additional comments for the author, including concerns about dual publication, research ethics, or publication ethics. (Please upload your review as an attachment if it exceeds 20,000 characters)

Reviewer #1: I wish to thank the authors for the excellent job that they have done in revising the manuscript. It has now become stronger especially the Results and Discussion sections.

I was pleased to note that the study limitations including those of the data used in this paper have now been expanded and discussed in the Discussion section.

My comments I raised in the previous round of reviews have been adequately addressed.

Thank you.

Reviewer #2: Thank you for your paper it is a very important topic which is not widely written about, and the paper is very well written. Nonetheless, I offer a few thoughts below which I hope resonate and may enrich the paper further.

I do have a small concern that the data is from 2014, HIV knowledge and treatment access has shifted significantly in this time – how might this shift outcomes? I see that the authors address this in the discussion, however as the reader until I get to the discussion this issue was ‘shouting very loudly at me’. Perhaps you could briefly acknowledge this earlier on and then discuss it in detail in the discussions section?

Abstract: I have a few points here, please apply appropriately throughout the article as well.

“Twelve participants from three FGDs had a median age of 37 (range 23-45) years, reported a median of 2 (range 1-4) sexual partners, and 1 (range 1-3) desired pregnancy partner(s). A third (N=4) had disclosed HIV-serostatus to the pregnancy partner. “ this is a bit confusing, what does ‘desired pregnancy partners’ mean? And please explain a ‘pregnancy partner’. This comes up in Table 1 as well, please clarify the term, I assume it means they have a partner who they would want to conceive with?

“Conclusions: Men living with HIV are interested in safer conception and willing to attend clinic programs.“ please think about whether you can generalize to ‘Men living with HIV…” as you have done here – qualitative research provides incredibly important information, however, there are many reasons why we tend not to generalize in this way. Perhaps re-phrase to “These men living with…”

Selection of partners: I assume they were receiving care in the public health sector? Please specify.

“Potential participants were recruited at a facility 69 based in KwaZulu-Natal” – again I assume a public facility? Please specify.

Data analysis: “Quantitative data from the questionnaires are described.” please explain in more detail.

Results: the authors note that “When men were encouraged to think of ways to protect a partner from HIV while conceiving they described sperm washing, in vitro fertilization, and donor sperm as strategies they had heard of but did not know how to access.” It is very interesting, and quite surprising, that they had heard of these methods, but not the other methods – could you perhaps indicate how many had heard of it, to give a fuller picture, and perhaps also a comment about how much they knew and how accurate their understanding was.

Discussion: in your first paragraph you include the challenge of recruiting men and limited hours of facilities etc. While this is an important point, I don’t think it should be in this first paragraph, in my view it is not the most important point and should not be at the start of your discussion. I would shift it elsewhere.

You mention that “This is supported by the first demonstration project of safer conception services in South Africa wherein all men were able to engage their partners”, please specify when this was conducted and how many men were involved, to provide more context and understanding for the reader.

“PLWH do not ask about options for pregnancy for many reasons, including sensing that providers are not supportive of their reproductive goals” – can you expand on this? Is this stigma around PLWH or what?

Thank you this was an interesting read.

**********

7. PLOS authors have the option to publish the peer review history of their article (what does this mean?). If published, this will include your full peer review and any attached files.

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Reviewer #1: Yes: Yandisa Sikweyiya

Reviewer #2: No

[NOTE: If reviewer comments were submitted as an attachment file, they will be attached to this email and accessible via the submission site. Please log into your account, locate the manuscript record, and check for the action link "View Attachments". If this link does not appear, there are no attachment files.]

While revising your submission, please upload your figure files to the Preflight Analysis and Conversion Engine (PACE) digital diagnostic tool, https://pacev2.apexcovantage.com/. PACE helps ensure that figures meet PLOS requirements. To use PACE, you must first register as a user. Registration is free. Then, login and navigate to the UPLOAD tab, where you will find detailed instructions on how to use the tool. If you encounter any issues or have any questions when using PACE, please email PLOS at figures@plos.org. Please note that Supporting Information files do not need this step.

PLoS One. 2021 Mar 25;16(3):e0240990. doi: 10.1371/journal.pone.0240990.r004

Author response to Decision Letter 1


28 Sep 2020

Reviewer #1: I wish to thank the authors for the excellent job that they have done in revising the manuscript. It has now become stronger especially the Results and Discussion sections. I was pleased to note that the study limitations including those of the data used in this paper have now been expanded and discussed in the Discussion section. My comments I raised in the previous round of reviews have been adequately addressed. Thank you.

Response. Thank you for the helpful comments and for reviewing the revision.

Reviewer #2: Thank you for your paper it is a very important topic which is not widely written about, and the paper is very well written. Nonetheless, I offer a few thoughts below which I hope resonate and may enrich the paper further. I do have a small concern that the data is from 2014, HIV knowledge and treatment access has shifted significantly in this time – how might this shift outcomes? I see that the authors address this in the discussion, however as the reader until I get to the discussion this issue was ‘shouting very loudly at me’. Perhaps you could briefly acknowledge this earlier on and then discuss it in detail in the discussions section?

Response. Thank you for this comment. We added the following to the introduction: “While these data were collected in 2014, men living with HIV in South Africa remain an under-reached population, their reproductive goals are not yet integrated into HIV care, and we believe these data remain relevant to understanding the needs and considerations of men living with HIV in South Africa in 2020.”

Abstract: I have a few points here, please apply appropriately throughout the article as well.

“Twelve participants from three FGDs had a median age of 37 (range 23-45) years, reported a median of 2 (range 1-4) sexual partners, and 1 (range 1-3) desired pregnancy partner(s). A third (N=4) had disclosed HIV-serostatus to the pregnancy partner. “ this is a bit confusing, what does ‘desired pregnancy partners’ mean? And please explain a ‘pregnancy partner’. This comes up in Table 1 as well, please clarify the term, I assume it means they have a partner who they would want to conceive with?

Response. This study enrolled men planning for a pregnancy with a female partner in the next year. Therefore we asked questions about the enrolled men’s desired pregnancy partner. We added additional clarification of this term where first used in the methods and the abstract.

“Conclusions: Men living with HIV are interested in safer conception and willing to attend clinic programs.“ please think about whether you can generalize to ‘Men living with HIV…” as you have done here – qualitative research provides incredibly important information, however, there are many reasons why we tend not to generalize in this way. Perhaps re-phrase to “These men living with…”

Response. - We have edited this to ensure that readers understand that abstract conclusions refer to this data in the manuscript. This sentence now reads, “Men living with HIV expressed interest in safer conception and willingness to attend clinic programs…”.

Selection of partners: I assume they were receiving care in the public health sector? Please specify. Also, “Potential participants were recruited at a facility 69 based in KwaZulu-Natal” – again I assume a public facility? Please specify.

Response. In the methods section we indicated that men were recruited from an NGO/Department of Health (DoH) collaborative healthcare facility based in a large township in eThekwini, KwaZulu-Natal, South Africa. We did not recruit the partners of the men for the focus group discussions.

Data analysis: “Quantitative data from the questionnaires are described.” please explain in more detail.

Response. We have amended this sentence which now reads:

“Quantitative data from the questionnaires are described using median (range) and number (%).”

Results: the authors note that “When men were encouraged to think of ways to protect a partner from HIV while conceiving they described sperm washing, in vitro fertilization, and donor sperm as strategies they had heard of but did not know how to access.” It is very interesting, and quite surprising, that they had heard of these methods, but not the other methods – could you perhaps indicate how many had heard of it, to give a fuller picture, and perhaps also a comment about how much they knew and how accurate their understanding was.

Response. We added additional language to indicate what men shared about sperm washing. Because this is a qualitative paper with few men and we, therefore, did not systematically assess what all men knew about sperm washing (or any of the methods), we would prefer not to list the number of men who appeared to understand sperm washing as this is not really well aligned with the methods used in this manuscript.

Discussion: in your first paragraph you include the challenge of recruiting men and limited hours of facilities etc. While this is an important point, I don’t think it should be in this first paragraph, in my view it is not the most important point and should not be at the start of your discussion. I would shift it elsewhere.

Response. Thank you for this suggestion. We have moved this discussion to a later section on the challenges of engaging men.

You mention that “This is supported by the first demonstration project of safer conception services in South Africa wherein all men were able to engage their partners”, please specify when this was conducted and how many men were involved, to provide more context and understanding for the reader.

Response. Thank you for this suggestion. We have added more details about this project.

“PLWH do not ask about options for pregnancy for many reasons, including sensing that providers are not supportive of their reproductive goals” – can you expand on this? Is this stigma around PLWH or what?

Response. We have edited this sentence which now reads:

“PLWH do not ask about options for pregnancy for many reasons, including sensing that providers are not supportive of their reproductive goals and stigma towards PLWH having children (4, 16, 40).”

Thank you this was an interesting read.

Response. Thank you for your helpful review!

Attachment

Submitted filename: Response to Reviewers.pdf

Decision Letter 2

Kristin Dunkle

7 Oct 2020

“It really proves to us that we are still valuable”:  Qualitative research to inform a safer conception intervention for men living with HIV in South Africa

PONE-D-20-04292R2

Dear Dr. Matthews,

We’re pleased to inform you that your manuscript has been judged scientifically suitable for publication and will be formally accepted for publication once it meets all outstanding technical requirements.

Within one week, you’ll receive an e-mail detailing the required amendments. When these have been addressed, you’ll receive a formal acceptance letter and your manuscript will be scheduled for publication.

An invoice for payment will follow shortly after the formal acceptance. To ensure an efficient process, please log into Editorial Manager at http://www.editorialmanager.com/pone/, click the 'Update My Information' link at the top of the page, and double check that your user information is up-to-date. If you have any billing related questions, please contact our Author Billing department directly at authorbilling@plos.org.

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Kind regards,

Kristin Dunkle

Academic Editor

PLOS ONE

Additional Editor Comments (optional):

Reviewers' comments:

Acceptance letter

Kristin Dunkle

18 Feb 2021

PONE-D-20-04292R2

“It really proves to us that we are still valuable”:  Qualitative research to inform a safer conception intervention for men living with HIV in South Africa

Dear Dr. Matthews:

I'm pleased to inform you that your manuscript has been deemed suitable for publication in PLOS ONE. Congratulations! Your manuscript is now with our production department.

If your institution or institutions have a press office, please let them know about your upcoming paper now to help maximize its impact. If they'll be preparing press materials, please inform our press team within the next 48 hours. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information please contact onepress@plos.org.

If we can help with anything else, please email us at plosone@plos.org.

Thank you for submitting your work to PLOS ONE and supporting open access.

Kind regards,

PLOS ONE Editorial Office Staff

on behalf of

Dr. Kristin Dunkle

Academic Editor

PLOS ONE

Associated Data

    This section collects any data citations, data availability statements, or supplementary materials included in this article.

    Supplementary Materials

    S1 File. Safer conception men FGD guide.

    (PDF)

    Attachment

    Submitted filename: Response to Reviewers.pdf

    Data Availability Statement

    The informed consent document for this study does not allow for us to make the qualitative data (collected from a small sample of men) publicly available. Data access requests for elements of raw data may be sent to the UAB Center for Clinical and Translational Science via CCTS@uab.edu; primary study authors may also be contacted.


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