Understanding Ethical, Legal and Societal Issues (ELSIs) in Human Biobanking and Genomics for Research and Healthcare in Zimbabwe: The Genomics Inheritance Law Ethics and Society (GILES) initiative.

Biobanks and human genomics applications are key for understanding health, disease and heredity in Africa and globally. Growing interest in these technologies calls for strengthening relevant legal, ethical and policy systems to address knowledge disparities and ensure protection of society, while supporting advancement of science. In Zimbabwe there is limited understanding of ethical, legal, and societal issues (ELSI) for biobanking and genomics. The Genomics Inheritance Law Ethics and Society (GILES) initiative was established in 2015 to explore the current status and gaps in the ethical and legal frameworks, knowledge among various stakeholders, and to establish capacity for addressing ELSI of biobanking and genomics as applied in biomedical and population research, and healthcare. A multi-methods approach was applied including document reviews, focus group discussions and in-depth interviews among health and research professionals, and community members in six provinces comprising urban, peri-urban and rural areas. Emerging findings indicates a need for updating guidelines and policies for addressing ELSI in biobanking and genomics research in Zimbabwe. Emerging terminologies such as biobanking and genomics lack clarity suggesting a need for increased awareness and educational tools for health professionals, research scientists and community members. Common concerns relating to consent processes, sample and data use and sharing, particularly where there is trans-national flow of biospecimens and data, call for nationally tailored ELSI frameworks aligned to regional and international initiatives. This paper describes the strategy undertaken for the development and implementation of the GILES project and discusses the importance of such an initiative for characterisation of ELSI of human biobanking and genomics in Zimbabwe and Africa. Conducting this explorative study among a wide range of stakeholders over a countrywide geographical regions, established one of the most comprehensive studies for ELSI of human biobanking and genomics in Africa.

Impact of Facility-Based Mother Support Groups on Retention in Care and PMTCT Outcomes in Rural Zimbabwe: The EPAZ Cluster-Randomized Controlled Trial.

BACKGROUND: Prevention of mother-to-child transmission elimination goals are hampered by low rates of retention in care. The Eliminating Paediatric AIDS in Zimbabwe project assessed whether mother support groups (MSGs) improve rates of retention in care of HIV-exposed infants and their HIV-positive mothers, and maternal and infant outcomes. METHODS: The study involved 27 rural clinics in eastern Zimbabwe. MSGs were established in 14 randomly selected clinics and met every 2 weeks coordinated by volunteer HIV-positive mothers. MSG coordinators provided health education and reminded mothers of MSG meetings by cell phone. Infant retention in care was defined as "12 months postpartum point attendance" at health care visits of HIV-exposed infants at 12 months of age. We also measured regularity of attendance and other program indicators of HIV-positive mothers and their HIV-exposed infants. RESULTS: Among 507 HIV-positive pregnant women assessed as eligible, 348 were enrolled and analyzed (69%) with mothers who had disclosed their HIV status being overrepresented. In the intervention arm, 69% of infants were retained in care at 12 months versus 61% in the control arm, with no statistically significant difference. Retention and other program outcomes were systematically higher in the intervention versus control arm, suggesting trends toward positive health outcomes with exposure to MSGs. DISCUSSION: We were unable to show that facility-based MSGs improved retention in care at 12 months among HIV-exposed infants. Selective enrollment of mothers more likely to be retained-in-care may have contributed to lack of effect. Methods to increase the impact of MSGs on retention including targeting of high-risk mothers are discussed.

Patterns of Attendance at Mother Support Groups in Zimbabwe. The EPAZ Trial (2014-2016).

BACKGROUND: In Southern Africa, groups of mothers living with HIV successfully provide peer psychosocial support during pregnancy and early childhood. We report patterns of attendance at Mother Support Groups (MSGs) sessions among women and mothers living with HIV in rural Zimbabwe. METHODS: In the Elimination of Pediatric AIDS cluster-randomized trial, MSGs were established in 14 health facilities in Mutare and Makoni districts. Patterns of attendance at MSG sessions were categorized by calendar attendance from delivery to 6-month postpartum using a Dynamic Time Warping clustering method. Baseline characteristics of women and postpartum MSG attendance patterns were described. Linkages between these patterns and 12-month postpartum retention in care were explored using mixed-effects models. RESULTS: Most women (88%) attended at least 1 MSG session between enrollment and 6-month postpartum. Two patterns of postpartum MSG attendance, "Regular Attendance" and "Non-Regular Attendance," were readily identified. Being older than 32 (P = 0.01), booking for antenatal care before 22 weeks gestational age (P = 0.02), and being on antiretroviral therapy at first antenatal care booking (P = 0.01) were significantly associated with "Regular Attendance." "Regular Attendance" at MSG sessions during the 6-month postpartum period was significantly associated with better retention in care at 12 months, compared with "Non-Regular Attendance" (P < 0.01). DISCUSSION: Women living with HIV attended MSG sessions. However, few attended regularly. Younger and newly diagnosed women were less likely to attend postpartum MSG sessions or remain in care at 12 months postpartum. Peer support models should consider specific needs of these women, especially in rural areas, in order for MSGs to contribute to improve maternal and child health outcomes.

Cluster randomized trial on the effect of mother support groups on retention-in-care and PMTCT outcomes in Zimbabwe: study design, challenges, and national relevance.

Prevention of mother-to-child transmission (PMTCT) elimination goals are hampered by low rates of retention and antiretroviral treatment adherence. The Eliminating Pediatric AIDS in Zimbabwe (EPAZ) project is assessing whether mother support groups (MSGs) increase rates of retention-in-care of HIV-positive mothers and their exposed infants, increase male participation, and improve other maternal and infant health outcomes. EPAZ is a cluster randomized study involving 30 rural facilities in 2 health districts in Mutare province in eastern Zimbabwe. Facilities were randomly assigned to either the standard-of-care or intervention arms. We established MSGs for HIV-positive mothers at the 15 health facilities in the intervention arm. MSGs met every 2 weeks and were led by an HIV-positive mother who was appointed as MSG coordinator (MSG-C). MSG-Cs contacted nonattending patient-members of support groups by cell phone. If members still do not attend, MSG-Cs inform a health worker who initiates further outreach actions that are standard within the health system. At least 10 HIV-positive mothers are enrolled per facility. Enrollment started in July 2014. The primary outcome measure is retention-in-care of HIV-exposed infants at 12 months of age. Secondary outcome measures are: retention-in-care of HIV-positive mothers at 12 months postpartum, male participation, and other maternal and child health indicators. The study relies on routine health system data supplemented by additional data using tools created for the study. If shown to improve PMTCT retention outcomes, facility-based MSGs have the potential to be scaled up throughout the Zimbabwe National PMTCT program and could be considered in other country programs.

The HIV pandemic: a forgotten crisis?

The devastation caused by HIV and AIDS has touched virtually every world region. One concern is that the unrelenting nature of the HIV pandemic fosters a disposition, not of fear and determination, but of tolerance and complacency.