Perceptions of Sudanese women of reproductive age toward HIV/AIDS and services for Prevention of Mother-to-Child Transmission of HIV

Every day, approximately 1500 children become infected with HIV worldwide [1]. More than 90 % of children living with HIV have been infected through mother-to-child transmission (MTCT) [2, 3]. Most of these infections, which occur largely in Sub-Saharan Africa [4], can be prevented by currently available interventions, such as HIV testing, enrollment in treatment from as early as 14 weeks of gestation (second trimester) [5], management of labor (Caesarean section), informed decisions on breastfeeding and pediatric care [6, 7]. These interventions are referred to as PMTCT services. There were 2300 [Lower estimate 1500–3400 higher estimate] new HIV infections among children in the Middle East and North Africa in 2013 [8].

In Sudan, the HIV epidemic is driven by heterosexual transmission, and a review conducted in 2010 estimated that out of all new HIV infection cases, 59 % occurred in women of reproductive age (15–49 years). PMTCT services are therefore a high priority. Effective delivery of PMTCT services is highly rewarding, as it can reduce the risk of MTCT of HIV infection and ultimately eliminate new HIV cases among children [7].

In Sudan, PMTCT services began in 2005 as a pilot in a few states. In 2007, there were seven sites; this was scaled up to more than 27 sites in 2010 [9] and 227 in 2013 [10]. The opt-out strategy was piloted in Sudan in 2007 and adopted in 2009; in 2012, Provider Initiated Testing and Counseling (PITC) was introduced. Although PMTCT services are provided through tertiary, secondary and primary levels of health care, full implementation of the standard PMTCT package is limited to the tertiary level [10]. Despite the potential impact that PMTCT can have on reducing and eliminating new HIV cases among children, access to antenatal HIV testing during pregnancy is very low (<1 %), as is access to antiretroviral therapy (<10 %) [7]. Moreover, the level of PMTCT uptake in Sudan is very low. In 2010, 70 % of pregnant women (or 108,588) attended antenatal care at 27 UNICEF-supported sites, but only 13 % (or 14,277) of these pregnant women were tested [9]. Sudan has adopted option B+ for the PMTCT treatment protocol since 2012 [10]. In option B+, women receive triple Antiretroviral (ARVs) starting as soon as they are diagnosed and continuing for life [11]. In 2013, only 7 % of pregnant women took an HIV test, mainly due to inefficient implementation of PITC, which can be attributed to health system factors such as the reluctance of health care providers to provide HIV testing for pregnant women, lack of accountability and weak integration of HIV testing as part of the routine check-ups for pregnant women [10]. Incomplete implementation of the opt-out strategy regarding HIV testing, limited training of health care providers and delay in shifting from vertical to integrated programs were also mentioned among key factors affecting the scale-up of PMTCT services [9, 7].

Very limited research about PMTCT has been done in Sudan, and has focused on knowledge and attitudes towards HIV voluntary and counseling testing services among pregnant women [12] and descriptive research about maternal HIV infection [7]. In a systematic review of health system barriers and enablers, a wide range of key factors affected PMTCT and especially enrollment of women in ARV including long waiting times, transport costs, confidentiality, poor staff attitudes and fragmented service delivery platforms [13]. In another review, individual-level factors such as financial limitations and fear of stigma were identified [14]. Regarding organizational factors, a multi-level assessment study in Sub-Saharan African countries showed that increased workload for health and medical cadres was negatively associated with the acceptance and uptake of HIV testing [15]. In study in Khartoum, out of the 1005 pregnant women interviewed, 55.9 % (562) had basic information about the mother to child transmission [12]. However, the knowledge of pregnant women’s psycho-social determinants regarding HIV testing in the context of PMTCT in Sudan is still incomplete, whereas studies from other African countries have shown some contradictory findings.

A study in Kenya revealed patient-level factors, such as being of younger age (15–24 years compared to 25–39 years), rural residence and lower educational levels, to be associated with less acceptance of HIV testing during pregnancy [16]. A study in Nigeria indicated a high level of knowledge about HIV (90 %) but less knowledge about PMTCT (68 %) [17]. Another study in Nigeria [18] also revealed that younger women were less likely to use PMTCT services; however, no association was found between socioeconomic status and utilization of these services. In a study in North Uganda, HIV testing was higher for women with primary education compared to those with no formal education [19]. A study in Botswana indicated that living in an urban area, having knowledge about PMTCT, knowing someone who had received ARV therapy or PMTCT, and having a partner who had been tested for HIV were all significantly associated with higher test acceptance [20]. Stigma negatively impacts PMTCT service uptake and treatment adherence. In a study in Kenya [21], there was a strong association between stigma and non-disclosure of HIV positive status.

The aim of this qualitative study was to obtain insights into the perceptions of pregnant Sudanese women toward HIV/AIDS and the use of PMTCT services (mainly testing) and to explore the perceived changeable factors associated with use of services. This area is under-researched in Sudan. Understanding the factors associated with service use is essential to stimulate future quantitative research and to develop interventions aimed at increasing the utilization of available PMTCT services.

Ten focus group discussions (FGDs) with women of reproductive age were conducted at community settings in Sudan’s capital, Khartoum, in 2013. The number of women per group varied, the minimum being nine and the maximum 15. The duration of the discussions was 45 min to one hour maximum. Two female researchers were present in all focus group interviews. They were local Non-governmental Organization (NGO) outreach staff who had previously worked on different HIV/AIDS projects, and they received one-day training on the research guide. They spoke the local language (Arabic), and their age range was 29–35 years. Women were intentionally recruited due to the sensitivity of the topic and also to help stimulate the discussion. One served as a discussion facilitator who guided the discussion until all questions were thoroughly answered, while the other took notes and checked whether all topics were covered.

This study revealed that Sudanese women of reproductive age are aware of the sexual transmission of HIV, but they are not aware of the risk of MTCT, especially during labor. This conforms to findings in a study in rural southern India [25] in which knowledge about MTCT was low, as well as to a further study in Nigeria [17]. On the other hand, it contradicts findings from Botswana [26], Ethiopia [27] and Nigeria [17], which indicated a high level of MTCT knowledge among pregnant women. This could be attributed to the fact that PMTCT services are quite new in Sudan compared to those in Nigeria and Botswana.

Our study showed that most women perceived themselves to be at risk of and susceptible to HIV infection. This contradicts findings from a study in India [25] in which 97 % of women did not perceive themselves to be at risk of acquiring HIV. However, in our study this perception was not associated with a motivation for HIV testing, as suggested by Maman et al. [28], who found that among Tanzanian women the perception of personal susceptibility to HIV infection serves as a primary factor for motivating women to get an HIV test. It seems that the women in our study were not motivated to get tested to know their HIV status. A husband’s infidelity was found to be a real concern among women who believe that they feel at risk of HIV for this reason; this contrasted with a study in Kenya [29] in which a husband’s HIV/AIDS infection was attributed to his female partner’s promiscuous and unfaithful behavior.

In our study, we found that women will accept an HIV test if it is offered by a doctor. Despite other factors viewed as barriers (e.g., distance and time spent taking the test), this emphasizes the great influence that doctors and health cadres in Sudan have on the decisions made by pregnant women.

Our study also revealed that the HIV test is perceived as useful by some women for themselves and their unborn children; these perceived benefits of HIV testing were in line with findings from pregnant women in Tanzania [28].

Health-facility-related factors such as access, confidentiality, time spent at an antenatal clinic (ANC) and mistrust of laboratory results were mentioned as being among key issues affecting the intention to go for HIV testing. The first three factors fit in with findings from India [30] and with the findings of the systematic review by Colvin J. Christopher et al. [13], while the mistrust in laboratory results conforms to findings from Uganda [31].

Stigma was among the key factors interlinked with the intention and decision to have an HIV test performed during pregnancy. We also found that the majority of women were not willing to disclose their HIV status to anyone. The main perceived consequences of disclosure are stigma and the resultant expectation of job loss and being forced to leave the family. This is in line with findings by Turan M J et al. [21] and Maman et al. in Tanzania [28] in which fear of conflict with partners was mentioned as a main factor for non-disclosure. On the other hand, our findings contrast with conclusions of a study in Botswana [20] in which most of the women (85 %) had disclosed their HIV status, most commonly to their partners. However, in both studies, the consequences are similar and the end result is stigma and discrimination.

Our study had a reasonable sample size despite the sensitivity of the topic and the uniqueness of the respondents. A limitation of this study is that it was conducted among women in Khartoum (and peripheral neighborhoods) only, which might endanger the generalizability of the findings. However, as the capital city, Khartoum typically represents a wide spectrum of people originating from all other regions of Sudan. The use of notes instead of tapes could also be a limitation; however, this resulted in a lot of advantages in getting genuine information from the women, who participated freely.

In summary, our analysis reveals that if doctors offer the test, pregnant women will accept it. Duration of the test and confidentiality were also mentioned among other health-facility-related factors that influence the decision to undergo the test. Involvement of husbands and awareness of the benefits of the test were mentioned, but with less emphasis than the above factors. Because of anticipated stigma, almost all of the women mentioned that they would never disclose their HIV status if they tested positive. It is recommended that for any HIV/AIDS program, a holistic approach that tackles all aspects of the program should be adopted. In addition, the adequate implementation of PITC should be critically assessed in future research about PMTCT in Sudan.