“Telling my husband I have HIV is too heavy to come out of my mouth”: Pregnant women’s disclosure experiences and support needs following antenatal HIV testing in eastern Uganda

Introduction: Disclosure of HIV serostatus by women to their sexual partners is critical for the success of the prevention of mother-to-child transmission of HIV (PMTCT) programme as an integrated service in antenatal care. We explored pregnant HIV-positive and HIV-negative women’s partner disclosure experiences and support needs in eastern Uganda. Methods: This was a qualitative study conducted at Mbale Regional Referral Hospital in eastern Uganda between January and May 2010. Data collection was through in-depth interviews with 15 HIV-positive and 15 HIV-negative pregnant women attending a follow up antenatal clinic (ANC) at Mbale Hospital, and six key informant interviews with health workers at the clinic. Data management was done using NVivo version 9, and a content thematic approach was used for analysis. Results: All HIV-negative women had disclosed their HIV status to their sexual partners but expressed need for support to convince their partners to also undergo HIV testing.Women reported that their partners often assumed that they were equally HIV-negative and generally perceived HIV testing in the ANC as a preserve for women. Most of the HIV-positive women had not disclosed their HIV status to sexual partners for fear of abandonment, violence and accusation of bringing HIV infection into the family. Most HIV-positive women deferred disclosure and requested health workers’ support in disclosure. Those who disclosed their positive status generally experienced positive responses from their partners. Conclusions: Within the context of routine HIV testing as part of the PMTCT programme, most women who test HIV-positive find disclosure of their status to partners extremely difficult. Their fear of disclosure was influenced by the intersection of gender norms, economic dependency, women’s roles as mothers and young age. Pregnant HIV-negative women and their unborn babies remained at risk of HIV infection owing to the resistance of their partners to go for HIV testing. These findings depict a glaring need to strengthen support for both HIV-positive and HIV-negative women to maximize opportunities for HIV prevention. Copyright: ©2012 Rujumba J et al; licensee International AIDS Society.

The study was conducted in the ANC at Mbale Regional Referral Hospital, eastern Uganda, between January and May 2010. Mbale Regional Referral Hospital is located in Mbale District, about 245 km east of Kampala, the capital city of Uganda. The district has a population of 428,800 people [22], the majority being rural dwellers [23]. Mbale Regional Referral Hospital serves an estimated catchment population of 1.9 million people [24] from 13 districts in eastern Uganda. In Uganda, 94% of the women attend antenatal care at least once, while 47% of the women make at least four ANC visits [22]. In 2005, overall HIV prevalence in eastern Uganda, where Mbale District is located, was estimated at 5.3% while prevalence was 6.3% among women aged 15 to 49 years [25] in the same period. The ANC at the hospital operates daily on weekdays and serves about 60 pregnant women per clinic day. All antenatal attendees are given HIV education, which doubles as pre-test HIV counselling in line with the Uganda national HIV counselling and testing guidelines [1]. The pre-test health education covers the general maternal and child healthcare, as well as HIV-specific issues including HIV prevention, transmission, testing and care. Since 2006, all women who attend ANC at Mbale Hospital are tested for HIV, unless they opt not to be tested, and they are encouraged to disclose their HIV status to their sexual partners. A previous study conducted at the Mbale Hospital ANC in 2009 documented a high, almost universal, HIV testing rate among pregnant women [26]. Mbale Hospital was chosen for being one of the oldest PMTCT sites in Uganda and for serving largely rural residents like the vast majority of Uganda’s population [22]. We conducted a qualitative study to explore pregnant women’s experiences of routine HIV counselling and testing as part of antenatal care, including women’s experiences as in disclosure of their HIV status to their sexual partners. In this paper, we focus on the disclosure aspects of the study. A qualitative research design was deemed appropriate to obtain an in-depth understanding of pregnant HIV-positive and HIV-negative women’s partner disclosure experiences as well as the support that women feel they required before and after disclosure [27]. In addition, a qualitative design facilitated an in-depth examination of the influence of factors, such as gender, age, economic status and women’s roles as mothers, on women’s HIV status disclosure to their sexual partners. Thirty pregnant women (15 HIV-positive and 15 HIV-negative) participated in the study during their follow up ANC visit at Mbale Regional Referral Hospital. Study participants were selected purposively from women who had gone through routine HIV counselling and testing in their previous ANC visit during the current pregnancy. Study participants who provided written consent to participate in the study, were pregnant, had taken an HIV test on a previous ANC visit and were 18 years old or more were eligible. Variation in age, parity and education level were considered in selection of study participants. Only women who came back for subsequent ANC visits after HIV testing were included in the study. Tracing pregnant women who had tested for HIV as part of ANC at community level was not feasible in our case, given the challenges of HIV stigma, especially, for those who tested HIV-positive. Eligible women who agreed to participate in the study were identified through health workers at the ANC who served as gatekeepers (people who can allow and facilitate access to study participants) [28] and referred to members of the study team stationed at the ANC. The researchers obtained consent and enrolled study participants consecutively after undergoing their routine consultation and assessment. After interviewing 15 women in each of the two groups, we felt that the information generated by later interviews did not vary from earlier interviews, and thus no further interviews were conducted. A pre-tested interview guide [29,30] was used to explore study concerns. The interview guide was pre-tested by the research team at the ANC at Mbale Hospital. Data from this phase were not included in the final analysis. Semi-structured individual interviews [31] rather than focus group discussions were conducted to allow free and confidential interaction between researchers and women as HIV is still a sensitive condition in the study setting. The interview guide consisted of structured questions on women’s background characteristics as well as open-ended qualitative questions with probes, to allow an in-depth understanding of women’s disclosure experiences. The key issues explored were: whether women had disclosed their HIV status to their partners or not, how women found the process of disclosure, anticipated benefits and fear of disclosure, partners’ reaction to disclosure as well as the support required by women before and after disclosure. The interviews lasted for about 40 to 45 minutes, and most interviews (27) were audio recorded, with exception of three women (one HIV-positive and two HIV-negative) who did not consent for audio recording. For all interviews, interviewers were paired up (one asked questions and the other took notes). We made this provision after the pre-test, where we realized that if one person were to interview and take notes the interview would become stilted and would take longer. Interviews were conducted in Lumasaba, Luganda (main languages in the study area) and a few in English. JR conducted interviews in Luganda, and English and was assisted by three female research assistants (university graduates, experienced in qualitative research and conversant with the three languages). Audio-recorded interviews were transcribed and translated into English. JR, together with one research assistant, cross-checked the transcripts. While it was possible that the male gender of one researcher (JR) could have influenced women’s responses, this influence might have been minimal. Being a social scientist with extensive training and experience in conducting qualitative interviews involving women might have helped to neutralize this likely bias. In all interviews, JR paired up with a female research assistant and took time to build rapport with study participants before commencing interviews. Besides, the findings that were obtained from interviews conducted by female researchers did not vary from those conducted by JR. The study also benefited from peer briefing sessions involving multi-disciplinary male and female investigators, which we believe improved the credibility of study results. Six health workers (one doctor, two counsellors and three nurse midwives), involved in the antenatal care clinic, participated in key informant interviews. These were intended to contribute to a better understanding of women’s disclosure experiences as well as providing an opportunity for data triangulation involving comparing results from women and healthcare providers [28]. A key informant interview guide was used to conduct the interviews. Interviews explored whether women tested for HIV as part of antenatal care services, disclosed their HIV status to partners, women’s experiences, fears and support required before and after disclosure. Interim data analysis occurred concurrently with data collection through daily research team meetings, where emerging issues and further data collection needs were identified. This process was important in keeping track of the number of interviews that were conducted and in identifying emerging issues as well as those that required further probing. For instance, the fears of HIV-positive women of disclosure and men assuming similar HIV status as that of their partners were probed further in interviews with health workers. In addition, JR, who supervised data collection, briefed all co-authors on preliminary insights and emerging issues of the study. Further analysis was conducted by JR in close collaboration with HKH using a content thematic approach [32]. The English version of transcripts were imported into NVivo version 9.0 [33] for coding and analysis. The analysis was guided by the themes already contained in the interview guide, which were further refined following multiple readings of interview scripts to better understand the data, identify sub-themes and to group the data according to themes for analysis and interpretation. Quotations reflecting pregnant women’s HIV disclosure experiences and support needs were identified and have been used in the presentation of study findings. The identities of study participants were masked; for women we use “marital status, age and HIV status” as key identifiers. The term “married” in this regard is used for women who are formally married and those in informal unions (cohabiting). A similar categorization was used in the Uganda HIV/AIDS sero-behavioural survey [25] and is a common practice for collecting routine health information at health facilities in Uganda. For health workers we use “health worker”. Concurrent triangulation was conducted in analysis of data from pregnant women and those of key informants. This enabled us to have an in-depth understanding of HIV-positive and HIV-negative women’s disclosure experiences, response from partners and the support women require before and after disclosure. In addition, we conducted sub-group analysis for similarities and differences in disclosure experiences of HIV-positive and HIV-negative women. Ethical approval for the study was obtained from the Uganda National Council for Science and Technology, Makerere University, College of Health Sciences, Research and Ethics Committee and Mbale Regional Referral Hospital Institutional Review Committee. Permission was also obtained from management of Mbale Hospital and the Mbale District administration. All study participants provided written consent to participate in the study. Ink pads for thumb print were provided for those who could not read or write. Research assistants were trained on the approach to data collection and the ethical issues involved in HIV research. Study participants were assured of confidentiality, and each interview was conducted in a separate room provided by the ANC management.

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• rujumba, joseph
• neema, stella
• byamugisha, robert
• tylleskär, thorkild
• tumwine, james k.
• heggenhougen, harald k.