Systematic review of research focused on pregnant and postpartum women living with HIV: A relational ethics perspective.

Historically, maternal HIV research has focused on prevention of mother-to-child transmission and child outcomes, with little focus on the health outcomes of mothers. Over the course of the HIV epidemic, the approach to including pregnant women in research has shifted. The current landscape lends itself to reviewing the public health ethics of this research. This systematic review aims to identify ethical barriers and considerations for including pregnant and postpartum women living with HIV in treatment adherence and retention research. We completed a systematic literature review following PRISMA guidelines with analysis using a relational ethics perspective. The included studies (n = 7) identified ethical barriers related to (a) women research participants as individuals, (b) partner and family dynamics, (c) community perspectives on research design and conduct, and (d) policy and regulatory implications. These broader contextual factors will yield research responsive to, and respectful of, the needs of pregnant and postpartum women living with HIV. While current regulatory and policy environments may be slow to change, actions can be taken now to foster enabling environments for research. We suggest that a relational approach to public health ethics can best support the needs of pregnant and postpartum women living with HIV; acknowledging this population as systematically disadvantaged and inseparable from their communities will best support the health of this population.

"You must leave but I didn't want to leave": qualitative evaluation of the integration of ART into postnatal maternal and child health services in Cape Town, South Africa.

Postpartum HIV care retention rates are well below retention rates of the general adult population. The Maternal-Child Health Antiretroviral Therapy (MCH-ART) trial tested the benefit of integrating postpartum maternal ART and pediatric care through the end of breastfeeding compared to the standard of care of immediate postpartum referral of mother and infant to separate services. After the trial, twenty-one participants completed in-depth interviews to understand the acceptability of the service integration and the potentially differing "lived" experiences of the women randomized to the two conditions. Key findings include: (1) the MCH-ART integrated service was found to be acceptable, (2) women in the intervention condition expressed more negative feelings around the need to be transferred to general ART services and (3) women in the intervention condition perceived that they had more influence in selecting the clinic to which they would be transferred compared to those in the control group, although there was no actual difference by study design. Future work should more directly evaluate the impact of shared decision-making and long-term relationships with clinic staff on patient engagement and retention in HIV care.

"This is My Life We are Talking About": Adaptive Strategies for HIV Care Retention and Treatment Adherence Among Postpartum Women Living with HIV in Cape Town, South Africa.

INTRODUCTION: Retaining postpartum women living with HIV in ongoing care is critical for the health of the mother-child dyad but low adherence to antiretroviral therapy (ART) and retention in HIV care are a global concern. This issue is particularly salient in South Africa, where approximately 50% of women fall out of the care cascade by 6 months postpartum. The purpose of this secondary analysis is to understand the strategies that women use to navigate HIV care during the postpartum period. METHODS: This study was conducted in Gugulethu, in Cape Town, South Africa. In-depth interviews were conducted with 21 study participants at 18-months postpartum. Participants were interviewed about their perceptions and experiences of their postpartum HIV care, and barriers and facilitators to their adherence and retention. RESULTS: All participants reported using care navigation strategies across a spectrum of individual, interpersonal and structural levels to remain retained in care and adherent to ART. Participants expressed the importance of individual empowerment and knowledge of treatment benefits for their HIV care. Interpersonal relationships were discussed as a pathway to access both psychosocial and tangible support. Participants described overcoming structural barriers to care through creative problem solving and identified opportunities for care delivery improvement. DISCUSSION: Participants described a wide range of overlapping and interconnected care navigation strategies. Consistent with the assets model, participants discussed their own capacity and that of their communities to engage in lifelong HIV care. Better understanding of potentially successful individual care navigation strategies should guide future intervention work. TRIAL REGISTRATION: ClinicalTrials.gov NCT01933477.

Empowerment in pregnancy: ART adherence among women living with HIV in Cape Town, South Africa.

RATIONALE: Adherence to antiretroviral therapy (ART) is a global concern among pregnant and postpartum women living with HIV (WLHIV). Research focusing on peripartum WLHIV and how they balance adherence, engaging in HIV care, and other forms of self-care is limited. Women's empowerment theories have been applied to myriad health behaviors to understand patterns, establish mechanisms, and develop interventions; yet empowerment theory as applied to ART is under-researched. OBJECTIVE: Seeking deeper insight into peripartum health behaviors, we examine these factors using Naila Kabeer's (1999) women's empowerment theory, which denotes resources, agency, and achievements as three primary and interrelated components of empowerment. METHODS: Data were collected in Gugulethu, South Africa, between March and July 2018. Thirty in-depth interviews were conducted with WLHIV at 32-35 weeks of pregnancy, with topics including experiences related to ART adherence and meanings of empowerment in motherhood. Analyses had two phases: (1) inductive open-coding for emergent themes; and (2) classifying themes into Kabeer's empowerment theory. RESULTS: Participants expressed that resources play a critical role in adherence, ranging from practical support to motivational support provided by both family and partners. Agency is experienced as a desire to be an independent mother in the often-expected event that partners withdraw support. Participants described achievements as time-oriented goals, ranging from having a baby born without HIV to living a long and productive life. CONCLUSIONS: These findings suggest that a promising and innovative approach to improving ART adherence across the peripartum transition would focus on understanding resources as an enabling environment, build on existing feelings of agency, and highlight the lifelong goals achievable with high levels of adherence. A better understanding of how women's empowerment evolves over the course of pregnancy and into the postpartum period will support intervention development aimed at improving ART adherence and potentially additional peripartum health behaviors.