The development of Maisha, a video-assisted counseling intervention to address HIV stigma at entry into antenatal care in Tanzania
Introduction
Antenatal care (ANC) is a critical entry point for HIV prevention and treatment, with the potential to contribute to a sustainable approach to eliminating HIV/AIDS. Through robust programs that target prevention of mother-to-child transmission (PMTCT) of HIV, countries with generalized HIV epidemics have achieved nearly universal HIV testing for pregnant women, and have drastically reduced infant HIV infections (World Health Organization, 2017). The long-term success of PMTCT depends on women’s engagement in care throughout the pregnancy and postpartum periods (Psaros, Remmert, Bangsberg, Safren, & Smit, 2015). Multiple studies have highlighted the impact of HIV stigma on PMTCT care engagement, namely the role of stigma in impeding timely diagnosis, ART initiation and adherence, and disclosure to others for ongoing support (Buregyeya et al., 2017; Gesesew et al., 2017). Stigma is a persistent barrier to the utilization of HIV/AIDS services, which impedes the UNAIDS 90-90-90 initiatives to test, diagnose and treat all people living with HIV (Bajunirwe et al., 2018). Directly addressing HIV stigma at the time when women enter ANC has the potential to enhance the impact of PMTCT programs by facilitating linkage and retention in care, which in turn can help improve the well-being of pregnant women living with HIV (Grossman & Stangl, 2013).
According to Tanzania’s PMTCT guidelines, women are tested for HIV during their first ANC appointment, initiate antiretroviral therapy (ART) immediately upon diagnosis, and then receive PMTCT care in the ANC clinic throughout pregnancy (Tanzania Ministry of Health & Social Welfare, 2013). However, data in Tanzania demonstrate that a significant proportion of women do not return to PMTCT care in the clinic where they are diagnosed with HIV. A medical record review across PMTCT sites in Moshi, Tanzania found that, among 468 women who were diagnosed with HIV during their first ANC visit, 109 (23 %) never returned to that clinic for PMTCT care and were considered lost to follow-up (Mazuguni et al., 2019). Similarly, in a systematic review and meta-analysis of PMTCT studies in Africa, a majority of loss to follow-up occurred in the first six months after initiation of care (Knettel et al., 2018). Studies suggest that a primary reason for dropping out of care or silently transferring to another facility is HIV stigma (Ford et al., 2017; Knettel et al., 2018; McMahon et al., 2017). Stigma that is expected from or perpetuated by a male partner is of particular importance to women enrolled in PMTCT programs. Women often rely on male partners for social and financial support in this setting, and fear of abandonment by a partner, especially during pregnancy, may lead to hiding one’s HIV status and avoiding HIV care engagement (Clouse et al., 2014; Watt et al., 2019a). Together, these data support a recommendation of early counseling of pregnant women living with HIV, with a focus on stigma, to increase uptake of PMTCT services at the clinic where they initially present for care.
Targeting an HIV stigma intervention to individuals entering ANC has the additional impact of addressing HIV stigmatizing attitudes in the community. The apprehension of HIV testing introduces heightened emotions which, according to stress activation theory, offers a teachable moment that may lead to changes in attitudes and behavior (Eaton, Cherry, Cain, & Pope, 2011; Lawson & Flocke, 2009). Addressing the deeply personal side of HIV during the pre-test period can lead to what Goffman calls “wise” individuals who are actively supportive of members of a stigmatized group (Goffman, 1963). Studies suggest that even brief health behavior messages delivered during HIV testing can have long-term impacts on attitudes and behaviors (American Psychological Association, 2014; Eichler, Ray, & del Rio, 2002). HIV stigma reduction interventions have shown promise in reducing stigma among people living with HIV, though evidence of the impact of these interventions is scarce(Andersson et al., 2020; Barroso et al., 2014; Kemp et al., 2019). Technology-based HIV interventions have potential to reduce HIV stigma promote HIV prevention behaviors, and should be studied further for their potential reach and scalability (Noar, Black, & Pierce, 2009; Relf et al., 2015)
To address the challenge of HIV stigma in ANC, we developed Maisha (Swahili for “Life”), a video-assisted counseling intervention for pregnant women and their male partners. Maisha is a three-part intervention led by trained counselors, which aims to reduce HIV stigma among the general population and promote HIV care engagement among women living with HIV. This study describes the formative research that informed the design of Maisha; a pilot randomized control trial of the Maisha intervention was initiated in April 2019 in two ANC clinics in Northern Tanzania (ClinicalTrials.gov, NCT03600142).
Section snippets
Study site
The study was conducted in two urban health clinics in Moshi, Tanzania where ANC and PMTCT services are provided. The two clinics together see approximately 2500 pregnant women for antenatal care each year, with approximately 120 (4.8 %) infected with HIV. Women are strongly encouraged to attend the first antenatal care appointment with the father of the child, and approximately 60 % are accompanied by a male partner to the first appointment. Upon presenting for ANC, women and their partners
Qualitative data
The qualitative exploration revealed key drivers and manifestations of HIV stigma in the community, as well as internalized stigma (i.e., feelings of shame) among those who were living with HIV (Table 3). Notably, women living with HIV described limited experiences of enacted stigma, but significant fears related to anticipated stigma. They feared negative responses from family members, their male partner, or broader social circle if their HIV status were to become known. This fear led to
Discussion
While the urgency of initiating pregnant women living with HIV on lifelong ART is clinically justified, women are often not ready to accept their status and to commit to lifelong treatment (Katirayi et al., 2016; McLean et al., 2017). Our research suggests that, after HIV diagnosis, some women never return to the clinic where they initially presented for ANC, and that others drop out of care or silently transfer to another clinic due to perceived stigma (Knettel et al., 2018; Mazuguni et al.,
Conclusion
This paper described the development of an HIV stigma reduction intervention that can be integrated into ANC to have impacts on both stigmatizing attitudes among the general population, as well as internalized and anticipated stigma constructs among people living with HIV. The intervention was developed using a theoretical framework and based on formative data collection; it evolved significantly through input from a study advisory board of diverse stakeholders and subsequent community
Author contributions
MHW, BAK, ETK, GS, JR(1) and BTM conceptualized the study and the related methodology. GK, JR(2), LM and HO oversaw and implemented data collection. GK, LM HO and RNW analyzed and reported the qualitative data. MHW, BAK and ETK wrote the initial substantive draft of the manuscript. All authors provided substantive input and editing during iterative phases of writing.
Funding
This project is funded by a grant from the Fogarty International Center at the National Institutes of Health (NIH; R21 TW011053) and a pilot grant from the Duke Center for AIDS Research (P30 AI064518), and based on prior NIH-funded research (R21 AI124344). We also acknowledge fellowship support received from the NIH Office of Behavioral and Social Science Research (OBSSR) and the Fogarty International Center (D43 TW009337).
Declaration of Competing Interest
The authors declare that they have no competing interests in relation to this research.
Melissa H. Watt, Ph.D. is an Associate Professor of Global Health at Duke University. She has a program of HIV stigma research in Tanzania and leads the Maisha study together with Dr. Mmbaga.
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Melissa H. Watt, Ph.D. is an Associate Professor of Global Health at Duke University. She has a program of HIV stigma research in Tanzania and leads the Maisha study together with Dr. Mmbaga.
Brandon A. Knettel, Ph.D. is a postdoctoral fellow at Duke Global Health Institute. He is currently working in Tanzania as a VECD Fogarty Global Health Fellow conducting research on HIV care engagement and mental health treatment.
Elizabeth T. Knippler, BA is a current MPH student at the UNC Gillings School of Global Public Health and previously served as the Maisha study coordinator while at the Duke Global Health Institute.
Godfrey Kisigo, MD is a Tanzanian physician currently pursuing Masters of Science in Global Health at Duke University. His research interests include reproductive health and sustainable models for HIV care.
James Ngocho, MD, MPhil Is an Assistant Lecturer at Kilimanjaro Christian Medical University College with training in medicine and public mental health. A co-investigator on the Maisha study.
Jenny Renju, PhD holds a joint position as an Assistant Professor of Public health at the London School of Hygiene and Tropical Medicine and a Senior Lecturer at Kilimanjaro Christian Medical University college. Her work explores the implementation of HIV policies across sub-Saharan Africa.
Jane Rogathi, RN, PhD is the acting Dean of the Kilimanjaro Christian Medical University School of Nursing. Her research focuses on the gender based violence and birth outcomes.
Saumya S. Sao is an undergraduate student at Duke University studying the intersection of gender and health.
Linda Minja, BSc is a junior statistician at the Kilimanjaro Clinical Research Institute. She assists in the data management and coordination of Maisha study.
Haika Osaki, MPH, is a researcher at the Kilimanjaro Clinical Research Institute. She is currently serving as the study coordinator for the randomized controlled trial of the Maisha intervention.
Rimel N. Mwamba, BA, is a research trainee at the Duke Global Health Institute. Her area of research interest is on HIV disclosure and its impact on HIV outcomes.
Blandina Mmbaga, MD, PhD is a pediatrician at the Kilimanjaro Christian Medical Centre and Director of Kilimanjaro Clinical Research Clinical Institute. She leads the Maisha study together with Dr. Watt.