Plain English summary
For women living with HIV, disclosure to male partners is important in preventing HIV transmission to infants and staying healthy on treatment. Gender inequality plays a key role in low rates of disclosure by women to male partners. In addition, HIV disclosure rates may differ depending on whether the woman was recently or previously diagnosed, or whether she is pregnant or has delivered. We interviewed 100 women living with HIV in rural North-Central Nigeria to evaluate their disclosure history and experiences. The women were pregnant and newly or previously HIV-diagnosed, breastfeeding, or had dropped out of HIV care.
Most women (81%) reported disclosing to anyone; with more disclosing to male partners than relatives (85% versus 55%). However, family members were typically disclosed to, first. Also, newly-diagnosed and out-of-HIV-care women were least and most likely, respectively, to disclose to anyone. Male partner disclosure rates were similar across groups. Women who disclosed to male partners did so to motivate them to test for HIV and to keep open, honest couples’ communication. Women across all groups reported avoiding male partner disclosure due to fear of divorce and violence. However, when healthcare workers were involved, disclosure experiences were mostly positive.
Our results show that family members were more approachable than male partners for initial disclosure, and that healthcare workers can, and have been instrumental in improving male partner disclosure experiences among HIV-positive women. Therefore, healthcare workers should be trained and proactively involved in helping HIV-positive women to disclose to male partners.
Background
In 2016, there were an estimated 3.2 million people living with HIV in Nigeria, at a prevalence rate of 2.9% in the general population [
1]. Unprotected heterosexual sexual intercourse remains the main mode of HIV transmission in Nigeria [
2]. Latest available data show HIV prevalence at 3.5% in adult females versus 3.3% in males; and 3.6% and 3.2% in rural versus urban areas, respectively [
2]. In 2016, only 34% of Nigeria’s large HIV-positive population were estimated to know their HIV status, and only 30% of those diagnosed received antiretroviral therapy (ART) [
1]. Linkage to treatment is important for HIV prevention, because once an HIV-positive client is initiated and is compliant on a suppressive ART regimen, the risk of onward transmission drops significantly [
3]. Thus, knowledge of HIV status through massive scale-up of HIV testing, and subsequent linkage to suppressive treatment is critical to containing the HIV epidemic.
Besides personal knowledge of HIV status, disclosure of such status by people living with HIV to others – family, friends, sexual partners – is important for HIV prevention, including the prevention of mother-to-child transmission of HIV (PMTCT) [
4]. Disclosure facilitates treatment uptake, drug adherence and retention in care for people living with HIV, including pregnant women [
4‐
10]. For this population, disclosure is important for dual prevention of HIV transmission to sexual partners and for PMTCT, through promoting male partner HIV testing, the adoption of safer sex practices, and partner support for PMTCT service uptake [
11,
12].
The PMTCT cascade is a multistep continuum of care package to be completed by HIV-positive mother-exposed infant pairs, and includes maternal HIV testing and treatment, antenatal and delivery care, early infant diagnosis, postnatal services, and linkage to long-term HIV care and support [
13]. Women who have disclosed have higher rates of antenatal care (ANC) uptake, facility delivery, and PMTCT ART use compared to women who have not [
7]. Non-disclosure has been reported as a predictor of PMTCT cascade dropout [
14], while women who disclosed to their partners were up to five times more likely to access and be retained in PMTCT care [
15].
Despite the benefits, disclosure rates in PMTCT are widely disparate, particularly in sub-Saharan Africa. Among pregnant and post-partum African women living with HIV, disclosure rates to any person range between 5% and 97% (pooled estimate 67%), and to male partners, 30 to 93% (pooled estimate 64%) [
16]. Gender inequities often rooted in socio-cultural factors play a key role in low rates of HIV status disclosure to male partners among women living with HIV [
17]. Reasons for male partner non-disclosure among these women include fear of abandonment with the resultant loss of emotional, material and financial support [
17‐
22]; emotional abuse, including name-calling, accusations of infidelity and exposing the family to HIV [
19,
20,
22], and sex deprivation [
23,
24]. Stigma as well as perceived or enacted discrimination - from male partners and/or the community at large-have also been reported [
19,
25]. In extreme cases, women do not disclose for fear of physical violence and other forms of intimate partner violence [
17,
19,
26,
27].
As a result of HIV testing in pregnancy, women are often diagnosed before their male partners-regardless of who was infected first-and assume the added burden and responsibility of disclosure [
25,
26]. Such gendered asymmetrical disclosure – where only one partner discloses - affects women disproportionately and negatively, as the partner who tests positive first is considered the unfaithful partner and “cause” of the infection, even though the male sexual partner may already be infected [
22,
26]. Among HIV-positive women, the first choice of whom to disclose to is often not their male sexual partner(s); rather, where disclosure occurs, it is usually first to a trusted family member who is expected to provide social support [
21]. Disclosure to a male partner may occur later or not at all [
28,
29]. Despite pre-disclosure fears, many women who disclose report surprisingly positive reactions and support from family and male partners [
6,
12,
15,
17,
21,
22,
30,
31]. Nonetheless, negative consequences have also been reported [
6,
12,
15,
17,
18,
21,
26,
27].
The reasons for (non)-disclosure and therefore disclosure rates may differ depending on where a woman may be in her PMTCT or HIV treatment journey. Studies in Nigeria have reported HIV disclosure rates from women to male partners between 23.0% and 75.6% in often urban ART clinics [
24,
32‐
34]; and 90.4% among pregnant women [
27]. However there is little differentiated data on rates of disclosure among women at different points along the PMTCT cascade, particularly in programmatically challenging rural areas.
Nigeria is an especially important target for scale-up of impactful strategies in maternal and child health and PMTCT. The country has large gaps, especially in rural settings, including low rates of skilled ANC uptake in rural (46.5%) vs urban (86.0%) areas; and facility delivery for only 21.9% of rural, versus 61.7% of urban women [
35]. PMTCT gaps include low maternal ART coverage and poor early infant diagnosis uptake of only 30% and 9%, respectively [
36]. Studies discussed above highlight the need for evidence to inform robust socio-behavioral interventions targeting key issues like non-disclosure, to augment biomedical PMTCT strategies in Nigeria and similar settings. This study sought to determine the rates, patterns and experiences of disclosure, primarily to male partners, among women at different stages of the PMTCT cascade in rural Nigeria.
Discussion
Among our study population of women living with HIV in rural North-Central Nigeria, we found overall disclosure rates to anyone to be relatively high, at 81%. Male partner disclosure reported by our study participants was also relatively high at 85%, compared to 23.0%, 86.5% and 90.4% reported in previous studies among women in South-West Nigeria [
9,
24,
27]. Across similar African settings, male partner disclosure rates among HIV-positive women ranged between 44% in Kenya to 93% in Zimbabwe [
7,
40]. Similar to our findings, a larger proportion of African women living with HIV ultimately disclose to their male partners than to others [
7,
15,
21,
41], although our findings suggest, similar to other studies [
21], that family members were often the first to be disclosed to.
Fear of divorce, interpersonal/domestic violence, neglect or other forms of psychological abuse deterred women from immediately disclosing to their male partners. However, with time and encouragement, especially from healthcare workers, women in our study population disclosed with surprisingly, largely positive results, as reported elsewhere in Africa [
18,
22], even in situations where male partners were reportedly HIV-negative. Among our study cohort, reasons for male partner disclosure included feelings of obligation and to encourage partner HIV testing, as reported from studies in other African countries [
15,
28]. For some women, disclosure to anyone occurred on the same day or shortly after diagnosis, as reported in other Nigerian [
42] and African studies [
18,
29]. Similar to findings in other studies [
6,
21,
43], women who did not disclose a positive HIV status to family members were seeking to protect them.
In our study, newly-diagnosed women had significantly lower disclosure rates to anyone or family, compared to women in the other cascade groups who had previously established care (
p = 0.001). Newly-diagnosed women also had the lowest rate of knowledge of partner serostatus (
p = 0.004). This is understandable considering that these women were newly-diagnosed and may not have had enough time to process and share their diagnosis with anyone, or seek to know partner’s HIV status. This finding is similar to disclosure data for the ART cascade that shows that newly-diagnosed patients had significantly lower disclosure rates than those in established care [
5]. Postpartum and breastfeeding women in care, on the other hand, had the lowest disclosure rates to male partners. The reason for this is not clear from our study. However, Brou et al. [
12] suggest that breastfeeding status correlates with partner disclosure by HIV-positive women; with women who choose exclusive formula feeding disclosing at a higher rate than those who choose to breastfeed. We were not able to explore disclosure rates in the context of infant feeding practices, as our study objectives did not include in-depth evaluation of infant feeding practices across all four cascade groups.
Pregnant women (newly diagnosed + ANC) had significantly lower disclosure to anyone than non-pregnant women (postpartum + LTFU) (
p = 0.0007). Again, one likely explanation could be that non-pregnant women may have known their status for a longer duration. However, we were not able to accurately establish when previously-diagnosed women were diagnosed, as many women in our small rural community study setting did not enrol at the facility where they were first HIV-diagnosed: They often presented at multiple other facilities as “testing-naive” patients. Additionally, when asked, they were often unsure of the exact day or month of testing. This phenomenon was noted in the MoMent prospective study as well [
44]. We are therefore limited in explaining if, or how time of HIV testing, and infant feeding practice influenced disclosure across the PMTCT cascade. Further research is needed on these aspects. There were no observed differences across the cascade groups with respect to male partner or family disclosure. However, our small sample size may have precluded the discovery of potential differences in our quantitative results.
Addressing the lack of, or delayed disclosure among couples is important for our study population and the larger HIV community in our study setting because of the relatively high reported HIV serodiscordance rate of nearly 56%, and unknown partner HIV status of 33%. Among our cascade groups, newly-diagnosed and ANC women were less likely to know their partner's status, compared to postpartum and LTFU women, and this difference was statistically significant. Previous Nigerian studies reported a similar serodiscordance rate for North-Central Nigeria of 51.9% [
23] and lower rate of 38.5% for South-East Nigeria [
45]. Proportions of HIV-positive women with unknown male partner status of 62.4% and 85% have been reported from studies in North-Central and South-East Nigeria, respectively [
24,
45], which are much higher than for our study. Studies in similar sub-Saharan African settings have reported serodiscordance rates between 22.9% and 39% [
15,
46,
47], and unknown male partner status between 32.7% and 80% among women living with HIV [
11,
15,
48,
49]. Since we could not establish time of HIV diagnosis for our cascade groups, it is not possible to determine how and if this played a role in the observed differences in serodiscordance, and knowledge of partner status. For serodiscordant couples, early partner testing, notification and treatment can avert seroconversion in the HIV-negative partner [
23].
Similar to previous findings [
15,
43] our study highlights that healthcare workers play key motivating and supporting roles in disclosure among women living with HIV, especially to male partners, and actively facilitate partner HIV testing. Pre-existing and longstanding gender inequities in our study communities and similar settings have necessitated women needing more support (including to overcome fear) in order to disclose HIV-positive status to male partners. Intimate partner violence, inequitable laws and harmful traditional practices, including limited decision-making for women, reinforce unequal power dynamics between men and women [
50]. Healthcare workers can, and have mediated these power dynamics by increasing their involvement in disclosure, especially by women to male partners. By supporting couples counselling and education on testing and treatment, healthcare workers play a crucial authoritative role in minimizing negative partner reactions for women who have accepted testing and tested positive. This is especially important, as studies show that men living with HIV whose wives know their seropositive status are often less likely to be violent or react negatively to news of female partner’s seropositivity; thus, stressing the need for mutual HIV testing and disclosure [
20,
26]. Couple testing and disclosure will also lessen the burden on the partner, which in the PMTCT context is the woman, who would otherwise test first and/or positive [
51,
52].
As much as healthcare workers in our study setting assisted in disclosure, they and mentor mothers could only provide counselling and psychosocial support: they were not trained to provide professional mental health services. As such, professional mental services were not available to our study participants, especially newly-diagnosed women. Mental health services, if available, are often very expensive and located at large and/or tertiary centers located in urban areas at great traveling distance from rural communities. Thus, the study team could not refer participants for these services. Furthermore, such mental health referrals are not included in routine PMTCT care at the study facilities.
While no respondent in our study reported experiencing physical violence from their male partner as a result of disclosure, fear of such intimate partner violence as well as emotional/financial neglect and divorce/separation were expressed by women across cascade groups as reasons for non-disclosure. Therefore, prevention and management of marital conflict and intimate partner violence in the context of HIV disclosure remain important issues to address in PMTCT programming.
Surprisingly, male partner disclosure rates were no different among LTFU women compared to other cascade groups in our study. This is contrary to previous findings where nondisclosure has been reported as a correlate of PMTCT cascade dropout among women living with HIV [
14] [
53]; however, the disclosure evaluated in these studies were to anyone and not specifically disaggregated for disclosure to male partners or other individuals. Larger, and more robust studies are needed to examine the relationship between male partner-specific disclosure rates among women in and out of care along the PMTCT cascade.
Study limitations
This study was conducted in rural Nigeria with a purposive sample, therefore study findings may not be generalizable to all HIV-positive women in the study communities, nor to urban settings in Nigeria or elsewhere. There was also significant missing data for knowledge of male partner status: 19 of 100 women did not respond to this question. Analysis was therefore based on the remaining 81 who did. Furthermore, as explained earlier, we were unable to collect reliable data for all study participants on specific initial date of HIV diagnosis. Thus, we could not evaluate if timing of diagnosis was a correlate of overall disclosure rates, and rates between cascade groups. Socio-economic status and male partner socio-demographic data could also not be evaluated vis-à-vis disclosure rates, since we did not collect these data. Disclosure and male partner HIV-status was as reported by participants; it was not possible to verify this information and as such may not reflect reality. Lastly, limitations in cascade-based recruitment (especially for the two post-partum groups) in our rural study settings resulted in a relatively small sample size for each cascade group; this limited robust statistical comparisons between and within groups.