“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

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Study Justification:
The study aimed to explore the experiences and support needs of pregnant women in eastern Uganda regarding disclosure of their HIV status to their sexual partners. This is important for the success of the prevention of mother-to-child transmission of HIV (PMTCT) program. Understanding the barriers and challenges faced by women in disclosing their HIV status can help inform interventions and support services to improve HIV prevention and care.
Highlights:
1. All HIV-negative women in the study had disclosed their HIV status to their partners, but expressed the need for support to convince their partners to undergo HIV testing.
2. Most HIV-positive women had not disclosed their status to their partners due to fear of abandonment, violence, and accusation of bringing HIV infection into the family.
3. Pregnant HIV-negative women and their unborn babies remained at risk of HIV infection due to resistance from their partners to undergo HIV testing.
4. Women who disclosed their positive status generally experienced positive responses from their partners.
5. The fear of disclosure was influenced by gender norms, economic dependency, women’s roles as mothers, and young age.
Recommendations:
1. Strengthen support for both HIV-positive and HIV-negative women to maximize opportunities for HIV prevention.
2. Provide support and counseling to HIV-positive women to help them navigate the challenges of disclosure.
3. Develop interventions to address gender norms and empower women to disclose their HIV status without fear of negative consequences.
4. Increase awareness and education among partners about the importance of HIV testing and prevention in the context of antenatal care.
Key Role Players:
1. Health workers: Provide counseling and support to pregnant women regarding HIV testing and disclosure.
2. Community leaders: Promote awareness and education about HIV prevention and the importance of partner testing.
3. NGOs and community-based organizations: Provide additional support services and resources for pregnant women and their partners.
4. Policy makers: Develop policies and guidelines to support HIV prevention and care, including strategies for partner testing and disclosure.
Cost Items for Planning Recommendations:
1. Training and capacity building for health workers on counseling and support services: This may include workshops, materials, and ongoing supervision.
2. Community awareness campaigns: Costs for developing and disseminating educational materials, organizing community events, and engaging community leaders.
3. Support services for pregnant women: Funding for additional counseling services, support groups, and resources for women who have disclosed their HIV status.
4. Research and evaluation: Funding for further research to assess the effectiveness of interventions and evaluate the impact of disclosure support services.
Please note that the above cost items are estimates and may vary depending on the specific context and resources available.

The strength of evidence for this abstract is 8 out of 10.
The evidence in the abstract is strong because it is based on a qualitative study conducted at Mbale Regional Referral Hospital in eastern Uganda. The study included in-depth interviews with 15 HIV-positive and 15 HIV-negative pregnant women, as well as key informant interviews with health workers. The data was analyzed using NVivo version 9 and a content thematic approach. The findings provide insights into pregnant women’s disclosure experiences and support needs following antenatal HIV testing. To improve the evidence, the abstract could include information about the demographics of the study participants, such as their age, education level, and parity. Additionally, it would be helpful to mention the specific themes that emerged from the analysis and provide some examples of the quotations from the study participants.

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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Based on the provided information, here are some potential innovations that could improve access to maternal health:

1. Mobile Health (mHealth) Solutions: Develop mobile applications or text messaging services that provide pregnant women with information about maternal health, including HIV testing, prevention, and care. These tools can also be used to send reminders for antenatal care visits and provide support for disclosure of HIV status to partners.

2. Community-Based Support Groups: Establish community-based support groups for pregnant women, where they can receive emotional support, share experiences, and learn from each other. These groups can also provide education on HIV prevention, testing, and disclosure, as well as connect women to healthcare services.

3. Male Involvement Programs: Develop programs that specifically target men to increase their involvement in maternal health. These programs can include education on the importance of HIV testing, prevention, and support for partner disclosure. Engaging men in the process can help reduce stigma and improve support for pregnant women.

4. Integrated Services: Integrate HIV testing and counseling services into routine antenatal care visits. This can help normalize HIV testing and make it more accessible for pregnant women. Additionally, integrating services can ensure that women receive comprehensive care and support throughout their pregnancy.

5. Training for Healthcare Providers: Provide training for healthcare providers on how to effectively support pregnant women in disclosing their HIV status to their partners. This can include communication skills training, counseling techniques, and strategies for addressing potential barriers to disclosure.

6. Peer Support Programs: Establish peer support programs where women who have successfully disclosed their HIV status can provide guidance and support to other pregnant women. Peer support can help reduce fear and stigma associated with disclosure and provide practical advice on how to navigate the process.

7. Health Education Campaigns: Conduct targeted health education campaigns to raise awareness about the importance of HIV testing, prevention, and partner disclosure. These campaigns can use various media channels, such as radio, television, and community events, to reach a wide audience and promote behavior change.

It is important to note that these recommendations are based on the information provided and may need to be tailored to the specific context and needs of the community.
AI Innovations Description
The study conducted in Mbale Regional Referral Hospital in eastern Uganda aimed to explore pregnant women’s experiences with partner disclosure of their HIV status and their support needs. The study found that HIV-negative women had disclosed their status to their partners but expressed the need for support to convince their partners to undergo HIV testing. On the other hand, most HIV-positive women had not disclosed their status due to fear of abandonment, violence, and accusations. These findings highlight the need to strengthen support for both HIV-positive and HIV-negative women to maximize opportunities for HIV prevention.

Based on this study, a recommendation to improve access to maternal health and address the challenges of partner disclosure in the context of HIV testing could be the implementation of comprehensive support services. These services could include:

1. Counseling and education: Provide comprehensive counseling and education to pregnant women and their partners about the importance of HIV testing, prevention, and disclosure. This should include information on the benefits of partner testing and the prevention of mother-to-child transmission of HIV.

2. Couple counseling: Offer couple counseling sessions to pregnant women and their partners to facilitate open communication and mutual decision-making regarding HIV testing and disclosure. This can help address fears and concerns and promote a supportive environment for disclosure.

3. Peer support groups: Establish peer support groups for pregnant women living with HIV and those who have disclosed their status to their partners. These groups can provide emotional support, share experiences, and offer practical advice on disclosure and managing relationships.

4. Health worker training: Provide training to health workers on how to support pregnant women in disclosing their HIV status to their partners. This should include guidance on addressing fears and concerns, promoting positive responses, and providing ongoing support throughout the disclosure process.

5. Community engagement: Engage community leaders, religious leaders, and other influential individuals to promote HIV testing, prevention, and partner disclosure. This can help reduce stigma and create a supportive community environment for pregnant women and their partners.

By implementing these recommendations, access to maternal health can be improved by addressing the challenges of partner disclosure in the context of HIV testing. This can contribute to the prevention of mother-to-child transmission of HIV and improve the overall health outcomes for pregnant women and their babies.
AI Innovations Methodology
Based on the provided description, the study focused on exploring pregnant women’s partner disclosure experiences and support needs following antenatal HIV testing in eastern Uganda. The study found that most HIV-positive women found it extremely difficult to disclose their HIV status to their partners due to fear of abandonment, violence, and accusation of bringing HIV infection into the family. On the other hand, HIV-negative women expressed the need for support to convince their partners to undergo HIV testing.

To improve access to maternal health in this context, the following innovations could be considered:

1. Mobile Health (mHealth) Interventions: Develop mobile phone applications or text messaging services to provide information and support to pregnant women regarding HIV testing, disclosure, and prevention of mother-to-child transmission of HIV. These interventions can help overcome barriers to accessing healthcare services and provide women with personalized support.

2. Community-Based Support Groups: Establish community-based support groups for pregnant women, where they can share their experiences, receive emotional support, and learn from each other. These support groups can also provide information on HIV testing, disclosure, and prevention strategies, and connect women with healthcare providers and resources.

3. Male Involvement Programs: Implement programs that specifically target men to increase their involvement in maternal health. These programs can include education and awareness campaigns, counseling services, and incentives to encourage men to accompany their partners to antenatal care visits and undergo HIV testing.

4. Training and Capacity Building: Provide training and capacity building programs for healthcare workers to improve their knowledge and skills in counseling pregnant women on HIV testing and disclosure. This can help healthcare workers provide appropriate support and guidance to women throughout the process.

To simulate the impact of these recommendations on improving access to maternal health, a methodology could be developed as follows:

1. Define the indicators: Identify key indicators that reflect improved access to maternal health, such as the percentage of pregnant women who undergo HIV testing, the percentage of women who disclose their HIV status to their partners, and the percentage of women who receive adequate support during the process.

2. Collect baseline data: Gather baseline data on the selected indicators before implementing the recommended innovations. This can be done through surveys, interviews, and data collection from healthcare facilities.

3. Implement the innovations: Introduce the recommended innovations, such as mHealth interventions, community-based support groups, male involvement programs, and training programs for healthcare workers.

4. Monitor and evaluate: Continuously monitor and evaluate the impact of the innovations on the selected indicators. This can be done through data collection, surveys, and interviews with pregnant women, healthcare workers, and community members.

5. Analyze the data: Analyze the collected data to assess the changes in the selected indicators and determine the effectiveness of the innovations in improving access to maternal health.

6. Adjust and refine: Based on the findings from the data analysis, make any necessary adjustments and refinements to the innovations to further improve their impact on access to maternal health.

7. Repeat the process: Repeat the monitoring, evaluation, and adjustment process periodically to ensure continuous improvement and sustainability of the innovations.

By following this methodology, it would be possible to simulate the impact of the recommended innovations on improving access to maternal health and make evidence-based decisions for further implementation and scaling up.

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