Testing Positive and Disclosing in Pregnancy: A Phenomenological Study of the Experiences of Adolescents and Young Women in Maseru, Lesotho

The routine antenatal screening through the prevention of mother to child transmission of HIV (PMTCT) services results in pregnancy being often the point at which an HIV diagnosis is made. Disclosure to partners presents particular complexities during pregnancy. However, research on the pattern and experiences of disclosure in pregnancy is limited in Lesotho, despite the high prevalence of HIV among pregnant women. The aim of this study was to explore and describe the disclosure experiences of adolescent girls and young women (AGYW) after receiving a positive HIV test result during pregnancy. Methods. Descriptive phenomenology using semistructured in-depth interview was used to collect data from AGYM sampled purposively from PMTCT sites located in urban areas of Maseru, Lesotho. Data analysis was inductive and followed the thematic approach. Findings. There were 15 AGYW involved in this study with the mean age of 20 years. Fourteen reported being pregnant with their first child and perceived HIV testing in antenatal care as compulsory. Ten AGYM disclosed their HIV status in the immediate posttesting period to protect their partners from HIV infection. The narratives revealed that the AGYM hoped that after disclosing, the partner would be tested for HIV. Furthermore, the AGYM disclosed because they wanted freedom to take their medication. Their experience of disclosure was relief, as they did not have to hide their HIV status. The AGYM reported being supported to adhere to medication and clinic attendance by their partners who also provided emotional support to them to deal with being HIV positive and pregnant. Conclusion. The AGYM recounted an overall positive experience of disclosure to their partners who agreed to test for HIV and adopted safe sex practices. This has positive implications for the PMTCT programme and the involvement of men in reproductive health. Therefore, there is need to integrate disclosure and partner testing interventions in the cascade of services in PMTCT programmes.


Introduction
In sub-Saharan Africa (SSA), adolescent girls and young women (AGYM) account for a 25% of new HIV infections among adults, despite interventions to reduce the rates of new infections [1]. Globally, young women aged 15 to 24 are twice as likely to be infected with HIV as their male counterparts [2]. Lesotho is one of the countries in SSA that is heavily affected by the HIV epidemic with general prevalence of HIV estimated at 25.6% [3].
Data suggest an increasing rate of acquiring HIV during pregnancy among adolescent girls and young women (AGYM) [4][5][6]. As a result of routine antenatal screening through the prevention of mother to child transmission of HIV (PMTCT) services, pregnancy is often the point at which an HIV diagnosis is made [7,8]. e adoption of the provider-initiated testing and counselling (PITC) as an opt-out approach to HIV testing and counselling (HTC) in the PMTCT programme has increased uptake of HIV testing services and early diagnosis of HIV among pregnant women [3]. is has led to a high proportion of pregnant adolescents in many settings in SSA learning about their HIV-positive status for the first time during antenatal screening [8][9][10][11].
A critical component of the PMTCT services is antenatal care services which play a critical role of linking women to HIV testing, pregnancy screening and monitoring, initiation and use of antiretroviral treatment (ART), and postnatal care of the mother and her infant [8,12]. However, the success of the PMTCT services depends on the ability to retain the women in care during the prenatal and postnatal period. HIV status disclosure, particularly to partners, remains central to increasing women's participation in PMTCT programmes [12][13][14]. Disclosure is particularly important within the Option B+ guidelines for PMTCT, whereby HIVpositive pregnant women are initiated on lifelong ART regardless of CD4 count [15,16]. Lack of disclosure and partner support impacts negatively on the prevention of MTCT of HIV, increases the risk of disengagement from care, results in poor adherence to recommended ART, decreases facility childbirth, and increases poor adherence to a breast feeding regimen [12,17,18]. e risk for the suboptimal uptake of PMTCT services remains high in SSA because of nondisclosure during pregnancy. A systematic review of disclosure studies in SSA found low disclosure rates among pregnant and postpartum women compared with the general population of people living with HIV (PLHIV) [19]. Whereas disclosure is challenging and complex at any period for PLHIV; it presents particular complexities during the vulnerable period of pregnancy and the postpartum period [12]. Receiving HIV-positive results during pregnancy is a distressing experience for women. e situation of having to deal with pregnancy, fear of transmission of HIV to the baby, disclosure of HIV status, and the decision to start lifelong ART make them vulnerable to multiple emotions [7]. erefore, HIV disclosure, particularly to partners, remains a significant source of stress because women often face the dual burden of disclosing both their HIV status and their pregnancies [20].
Low rates of disclosure that are observed among women who test HIV positive during pregnancy are due to fear of anticipated negative reactions, especially from partners [18]. e reasons cited for nondisclosure to partners during pregnancy include fears and concerns of losing support from their partners, of being accused of infecting their partner, of abandonment or rejection, violence from their partners, fear of accusation of infidelity, and fear of the loss of emotional and financial support for both the mother and the child [13,14,20,21].
HIV disclosure to male partners is a significant source of stress for pregnant women [18,20]. However, research on the pattern and experiences of disclosure to partners during pregnancy is limited in Lesotho, despite the high prevalence of HIV among pregnant women. e Lesotho ANC Surveillance (2016) estimates the HIV prevalence among pregnant women to be 27.9%, and AGYW are disproportionally affected. In general, research on the unique challenges of disclosure for pregnant women in SSA is limited as the few available studies were conducted in developed countries [9,15]. e aim of this study was to explore and describe the disclosure experiences of AGYW after receiving a positive HIV test result during pregnancy. e PMTCT programmes have a key role to play in helping pregnant women to make decisions about HIV disclosure and assisting them to navigate the disclosure process with partners [18,20].

Study Design and Setting.
e study settings were PMTCT sites located in urban areas of Maseru, the capital of the Kingdom of Lesotho. e Kingdom of Lesotho is a small (30,000 square kilometres in space) landlocked country surrounded by South Africa. Lesotho has an estimated population of 2.24 million; about 34% of the population live in urban and 66% in rural areas. Maseru lies directly on the Lesotho-South Africa border and has a total population of 4,74,791. Women of childbearing age are estimated to be 1,43,676 [22]. e HIV prevalence in Lesotho in 2015 was estimated to be 22.7%, and about half of women under 40 years are living with HIV [3]. In Maseru where the study was conducted, there are about 60 public and private health facilities providing PMTCT services and other HIV related services. All the facilities provide PMTCT and other HIV services using national HIV treatment guidelines. ree facilities were selected for the study, two were public clinics and one was private owned. e National Health Surveillance system estimates that the three PMTCT study sites see an average of 400 pregnant AGYW per month [22].
Descriptive phenomenology was used to explore and gain an in-depth understanding of how AGYW experience disclosure to their partners after testing HIV positive during their pregnancy. Descriptive phenomenology is a method of choice to understand and describe a phenomenon as experienced by a group of people without attempting to predict or explain behaviour [23,24]. Consistent with phenomenological enquiry, the researcher used purposive sampling to select AGYW who have experienced an HIV diagnosis during pregnancy [25] and to explore their perceptions, perspectives, understandings, and feelings about the phenomenon. In purposeful sampling, the researcher selects participants who can offer a meaningful perspective on the phenomenon of interest, from whom the researcher can learn a great deal about the phenomenon under inquiry [26]. e sample size consisted of 15 AGYW because the goal of phenomenological research is not to create results that can be generalised, but to understand the meaning of an experience of a phenomenon. erefore, phenomenology emphasises rich qualitative accounts over the quantity of data. As a result, a small number of homogenous participants is studied through extensive and prolonged engagement to develop patterns and relationships of meaning [27]. In the current study, homogeneity was maintained by selecting only participants who were HIV positive and pregnant. However, variability and diversity in terms of sociodemographics such as age, marital status, educational status, and parity ensured variation in the information to reduce information bias [26].

Data
Collection. Semistructured interview guide was used to collect data from the participants using a self-developed interview schedule with open-ended questions and possible probes. Consistent with the tradition of phenomenology [24,28,29], the participants were asked two broad, general questions: (1) what was it like to disclose your HIV positive status to your partner? (2) What was the outcome of disclosing your HIV positive status to partner? ese questions were used to gather data to come to a deeper understanding of the nature or meaning of their experiences of testing positive during pregnancy and disclosing their HIV status to partners. e investigator (second author) asked other questions and followed up on points raised in responses to the given questions. In addition, the interview schedule was used flexibly to allow the participants to speak freely about their experience of the phenomenon in their own words [24,28]. To allow the participants to speak freely, the interviews were conducted in Sesotho, the local language. e participants were interviewed once, and the interviews were 30-45 minutes long and were recorded with consent.

Data Analysis.
To prepare for data analysis, the investigator and a trained research assistant transcribed verbatim the interviews, translated them into English, and checked the transcripts for accuracy against the audio recordings. Data analysis was inductive and followed the thematic approach grounded in the tradition of descriptive phenomenology [30] as outlined in Sundler et al. [30]. e recordings were listened to and transcripts read several times to get an overall sense of the data and develop familiarity with the phenomenon that was being described. Next, the investigators searched and extracted statements for meanings to uncover emergent themes that described the live experiences of the participants. Lastly, the emergent themes were integrated and synthesized into a meaningful one that captured the phenomenon as experienced by the participants. e NVivo (QSR International, Melbourne, Australia), a qualitative data analysis package, was utilised for the analysis process.
In phenomenology, rigour is ensured through the thoroughness and completeness of the data collection and analysis [31]. To engender rigour, the researcher adopted a reflective attitude throughout the data analysis to ensure that interpretation was free of bias [31], and credible conclusions were being drawn from the data and that procedures were being followed to ensure a quality study.

Ethical Considerations.
Ethical clearance for this study was obtained from the Research and Ethics Committee of Sefako Makgatho Health Sciences University (SMUREC/H/ 121/2017: PG) and Lesotho National Ethics Committee. e participants were informed that their participation was voluntary. All provided written informed consent before the interviews. Pseudonyms were used to present the quotations to ensure privacy and anonymity. Table 1 provides participants' demographic characteristics.

Participant Context.
ere were 15 participants involved in this study, and their ages ranged from 18 to 24 years of age with the mean age of 20 years. None was employed nor did schooling during the study period. Educational levels varied from primary education (3), secondary education (10), to tertiary education (2). Marital status varied, with ten reporting that they were married and five reported being single. e married AGYW reported that they disclosed to their partners while the five single ones did not disclose because they had permanent partner separation before they could disclose their HIV test results. All the AGYW reported that they disclosed to family members (parents, grandparents, and siblings) while none extended the disclosure to the people outside of their families. Five of those who were married reported that their partners tested negative, and the five women who were abandoned did not know the HIV status of their partners. Fourteen AGYW reported being pregnant with their first child.

Emergent emes.
Seven themes emerged from the analysis of the interviews, which helped to capture the participants' experiences of disclosure during pregnancy. e main themes include the following: (1) HIV testing is not optional; (2) disclosure is a personal choice; (3) knowing the partner's status facilitates disclosure; (4) the need to protect the partner; (5) feeling relieved; (6) disclosure facilitates partner testing; and (7) feeling supported by the partner.

HIV Testing Is Not
Optional. HIV counselling and testing are offered to all pregnant women who enroll in the PMTCT programme. It is the first step in the PMTCT programme and the entry point for women to receive other PMTCT services. irteen of the 15 AGYW in the study discovered their HIV-positive status during their first antenatal visit. eir narratives indicated that when they visited e AGYW perceived the HIV testing as an activity that was expected of them because of the pregnancy but also indicated that they felt that they had no choice but to do it.
It was a matter of must to test because I was pregnant. We were told that we were supposed to get tested and know our statuses so that if ever we test positive we must take the treatment to save the baby's' live so that the baby will be born HIV free. (

Knowing the Partner's Status Facilitates Disclosure.
For most of the AGYW, the decision to disclose came easily. eir narratives revealed that knowing the partners' HIV status facilitated positive disclosure experiences for them. Disclosure was easy for those whose partners were HIV positive and were receiving ART medication at the time of disclosure. e AGYW were somewhat certain what their partners' reactions would be since they had accepted their partner's HIV diagnosis when the partner initially disclosed. In contrast, disclosure was difficult for AGYW who did not know the HIV status of their partners. For them, disclosure was difficult since the partner's reaction to disclosure was uncertain or was expected to be negative.

It was difficult, I did not even know where to start to tell him, I told my sister first and she was the one who advised me on what to say. (Lovely, 19 years old)
It was difficult but I ended up letting him know. I was afraid to disclose to him but then in the end, I felt I had. . ., I had to let him know. (

Feeling Relieved.
Disclosing to the father of the baby allowed the AGYW to unburden themselves. ere was a sense of relief and feeling that a heavy burden was removed from their shoulders after disclosure. Disclosing eased the pain of the HIV diagnosis and the reality of living with HIV. ey experienced disclosure positively, and the benefits that they derived from disclosure were of great importance in their acceptance of their test results. 3.2.6. Disclosure to Facilitate Partner Testing. One other positive outcome of disclosure for the AGYW is that most partners reacted positively to the disclosure. As mentioned, disclosure was to provoke the partners to undergo HIV testing, and the AGYW indicated that their partners underwent the test for HIV after disclosure. is resulted in open discussions about HIV and adoption of safe sexual practices.
After I tested HIV positive and disclosed my status to my partner, he told me he also wanted to test, and he said, "We are going to do it together". We were both tested. ( andy, 22 years old) I was afraid to disclose to him but then in the end I felt I had. . ., I had to let him know, and I told him I am HIV positive. I told him I am HIV positive and that it is best for him to be tested too. So he tested, but he was negative. (Dintle, 19 years old)

Feeling Supported by the Partner.
e AGYW who disclosed indicated that they experienced support and encouragement from the father of the baby. Although the reason for disclosure seemed to be for the benefit of the father of the baby, support is an expectation of a positive disclosure outcome. Even though their need for support was not explicit, AGYW seemed to disclose in order to obtain support. e support received from the father of the baby benefited the AGYW and facilitated their acceptance of their HIV positive results, adherence to ART, and antenatal care.
When I found out that I was positive. . ., HIV positive and he was HIV negative I was so frightened but later I accepted because after disclosure, he gave me support. . .. He advised me and he also told me about a lot of stuff that I have to take my treatment every day, he would tell me not to even skip a day without taking the treatment, just like that. (

Discussion
e study explored the disclosure experiences of AGYW after receiving a positive HIV test result during pregnancy. e AGYW visited the clinic to confirm pregnancy and to receive antenatal care, but they were also offered HIV testing as a routine cascade of care in the PMTCT programme [32]. ey perceived HIV testing in antenatal care as compulsory and that they had no choice in the matter. A Ugandan study reported that AGYW thought that the test was compulsory and that they could not receive any ANC services unless they accepted being tested for HIV [33]. e Uganda study found that the women fully understood the benefits of HIV testing AIDS Research and Treatment or PMTCT, while the AGYW in this study understood that they can prevent HIV from being transmitted from the mother to the baby by taking treatment.
Overall, at the time of their interviews, ten of the 15 AGYW reported that they disclosed their HIV status in the immediate posttesting period. A good relationship with one's spouse was identified as a facilitator of disclosure of HIV status to the spouse in other studies. Married women or those in stable cohabiting relationships reported disclosure to the father of the baby to a greater extent compared with single women [13,15,20,21,34]. Furthermore, a few AGYW knew the HIV status of their partners prior to testing HIV positive and, consistent with other studies, knowledge of a partner's HIV status facilitated disclosure [13,34].
Five AGYW did not disclose due to the permanent separation from their partners after they had informed the partner about the pregnancy. ese AGYW indicated that they would not disclose even if they were still in a relationship because they anticipated that their partners would react negatively to the disclosure. is further supports the view that women disclose when they feel safe in the relationship to do so [21,35]. e literature suggests that the decision to disclose or not might be more related to how secure particular women feel in the relationship than whether or not they were legally married [36][37][38]. e study found that the pregnancy for the AGYW who were abandoned by their partners was unplanned and the length of the relationship was very short. Knettel et al. [15] reported similar findings that unmarried women who had not disclosed in their study, consistently expressed fears of being abandoned by a partner if they disclose. In a previous study by the lead author, seven women were abandoned by their partners when they informed them about the pregnancy [21]. e termination of relationships during pregnancy speaks to the instability of partnerships in many settings, which makes HIV disclosure decisions challenging [20]. e decision to disclose to the partners was driven by different needs or concerns for the AGYW. One of the main reasons the AGYW chose to disclose was to protect the partners from HIV infection. Implied in the need to protect the partners was the hope that the partner would then be tested for HIV and take preventive measures against HIV if they tested negative. Concerns for the partner's health was the major reason cited for disclosing to sexual partners in other studies [14,21]. e study found that the AGYW discovered their partner's status upon disclosing their own status, which indicates some level of success in encouraging their partners to test. is was one of their key reasons for disclosing to their partners. Watt et al. [20] reported comparable reasons for disclosure to partners and indicated that women saw HIV testing as a way for the partner to get treatment and initiate conversations around HIV. Following partner testing, the AGYW in the study reported that they adopted safe sex practices to prevent infecting the HIV negative partner or reinfections. Similar safe sex practices were observed in another study conducted with women in a PMTCT programme [39]. e desire to have the partner test for HIV could be a point of intervention for PMTCT services, as disclosure to partners increases women's participation in PMTCT programmes [14]. e AGYW recounted an overall positive experience of disclosure in that the reactions to disclosure by their partners were positive. Consistent with other studies, the AGYW described feeling as though a burden had been lifted and that disclosure brings freedom and relief as they do not have to keep secrets which brings worries and stress [20]. Furthermore, disclosing eased the sorrow and sadness of the HIV diagnosis and the reality of living with HIV.
e AGYW in the current study and other studies wanted to live freely to take their ART medication without hiding them from their partners [20]. is was particularly important for those in marital relationships who wanted to avoid the stress of keeping a secret or hiding their ART medication from their spouses. e outcome of disclosure for those who disclosed to their partners was support to adhere to ART medication and clinic attendance. e AGYM mentioned support in the form of reminders to take their ART, providing transport money for clinic attendance, accompaniment to the clinic for antenatal care, and emotional support to deal with the different phases of being HIV positive and pregnant. Other studies in SSA reported similar findings that partners are generally supportive after disclosure [13,15,20,40].

Study Limitations.
As with all qualitative studies, the study sample was a small number of participants; therefore, the findings cannot be generalised to the whole country. Furthermore, the study included AGYW from one district in the country and their experiences may or may not be similar to other AGYW in other settings. However, the study findings provide an understanding of the outcomes of disclosure in pregnancy. e study cannot rule out social desirability in reporting the outcome of disclosure to partners since none of the AGYW reported negative partner reaction. e study focused on disclosure to partners and falls short on reporting incidences of stigma that are associated with nondisclosure in quantitative studies in SSA.

Conclusions
e study has provided a description of the disclosure experiences of AGYW who test positive and disclose in pregnancy. Although not all the AGYW in the study disclosed to the father of the baby, those who did had positive experiences of disclosure. e outcome of disclosure for most was support by the partner to adhere to ART medication and other PMTCT interventions. e AGYW were supported despite some of their partners having tested negative. e fact that all the partners agreed to test for HIV and adopted safe sex practices has implications for the success of the PMTCT programmes.
ere is a need for interventions to enhance disclosure and for partner testing to be integrated into the cascade of services in PMTCT programmes. is is of particular significance since the counselling provided within the PMTCT 6 AIDS Research and Treatment programmes does not address the disclosure challenge that AGYW face.

Data Availability
e data used to support the findings of this study are included within the article.

Conflicts of Interest
e authors declare no conflicts of interest associated with this study.