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.

Contraceptive trajectories postpartum: A longitudinal qualitative study of women living with HIV in Cape Town, South Africa.

BACKGROUND: Supporting the ability of women living with HIV (WLWH) to avoid unintended pregnancy during the postpartum period decreases the number of new pediatric HIV infections, reduces pregnancy-related morbidity and mortality, and is a cost-effective strategy for the elimination of mother-to-child transmission. However, little is currently known about the contraceptive intentions and experiences of reinitiating family planning use among mothers living with HIV as they transition from pregnancy into postpartum. STUDY OBJECTIVES: To (1) understand the contraceptive trajectories of women living with HIV during pregnancy and postpartum in Cape Town, South Africa, and (2) identify factors shaping differing contraceptive trajectories during the postpartum period. METHODS: Thirty pregnant WLWH were interviewed during their eighth month of pregnancy and completed follow-up interviews at 6-8 weeks and 9-12 months postpartum (n = 81 total interviews). Interview topics included postpartum contraception intentions, contraceptive use, and experiences accessing family planning services. Trajectory analysis of contraceptive intentions was applied after initial thematic coding. RESULTS: While nearly half of women interviewed during pregnancy expressed an intention to utilize a non-injectable contraceptive option after childbirth (e.g. implant, IUD, sterilization, oral contraceptive pills), all women interviewed at one year postpartum had received at least one injection. Three main contraceptive trajectories were identified. (1) realization of contraceptive intentions postpartum; (2) unrealized contraceptive intentions postpartum; and (3) change in contraceptive intention over time. Provider influence, coordination of services, and low contraceptive inventory were identified as potential factors shaping the contraceptive trajectories of participants enrolled in the study. CONCLUSION: Disparities between contraceptive method intentions articulated by WLWH during pregnancy and methods attained postpartum suggest that significant barriers remain for women who are unsatisfied with injectable contraception. Failing to provide postpartum mothers living with HIV their intended family planning method undermines efforts to prevent unintended pregnancy, a key pillar of elimination of mother-to-child transmission.

Acceptability of Interventions to Improve Engagement in HIV Care Among Pregnant and Postpartum Women at Two Urban Clinics in South Africa.

INTRODUCTION: Pregnant women initiating antiretroviral therapy (ART) in sub-Saharan Africa have been shown to have sub-optimal engagement in care, particularly after delivery, and interventions to improve engagement in care for this unique population are urgently needed. METHODS: We enrolled 25 pregnant women living with HIV at each of two large antenatal clinics in Johannesburg and Cape Town, South Africa (n = 50), and conducted in-depth interviews. We assessed participants' reported acceptability of the following proposed interventions to improve engagement in care and retention monitoring data systems: financial incentives, educational toys, health education, combined maternal/infant visits, cell phone text reminders, mobility tracking, fingerprint/biometric devices, and smartcards. RESULTS: Acceptability overall for interventions was high, with mixed responses for some interventions. Overall themes identified included (i) the intersection of individual and facility responsibility for a patient's health, (ii) a call for more health education, (iii) issues of disclosure and concerns about privacy, and (iv) openness to interventions that could improve health systems. DISCUSSION: These findings provide insight into the preferences and concerns of potential users of interventions to improve engagement in HIV care for pregnant women, and support the development of tools that specifically target this high-risk group.

Patient experiences of ART adherence clubs in Khayelitsha and Gugulethu, Cape Town, South Africa: A qualitative study.

BACKGROUND: Globally, 37 million people are in need of lifelong antiretroviral treatment (ART). With the continual increase in the number of people living with HIV starting ART and the need for life-long retention and adherence, increasing attention is being paid to differentiated service delivery (DSD), such as adherence clubs. Adherence clubs are groups of 25-30 stable ART patients who meet five times per year at their clinic or a community location and are facilitated by a lay health-care worker who distributes pre-packed ART. This qualitative study explores patient experiences of clubs in two sites in Cape Town, South Africa. METHODS: A total of 144 participants took part in 11 focus group discussions (FGDs) and 56 in-depth interviews in the informal settlements of Khayelitsha and Gugulethu in Cape Town, South Africa. Participants included current club members, stable patients who had never joined a club and club members referred back to clinician-led facility-based standard care. FGDs and interviews were conducted in isiXhosa, translated and transcribed into English, entered into NVivo, coded and thematically analysed. RESULTS: The main themes were 1) understanding and knowledge of clubs; 2) understanding of and barriers to enrolment; 3) perceived benefits and 4) perceived disadvantages of the clubs. Participants viewed membership as an achievement and considered returning to clinician-led care a 'failure'. Moving between clubs and the clinic created frustration and broke down trust in the health-care system. CONCLUSIONS: Adherence clubs were appreciated by patients, particularly time-saving in relation to flexible ART collection. Improved patient understanding of enrolment processes, eligibility and referral criteria and the role of clinical oversight is essential for building relationships with health-care workers and trust in the health-care system.

The dimensionality of disclosure of HIV status amongst post-partum women in Cape Town, South Africa.

Disclosure of HIV status to sexual partners and others has been presented as positive health behaviour and is widely encouraged by antiretroviral treatment (ART) programmes, providers and policies. However, disclosure is also highly contextual and its positive effects are not universal. We explore the dimensions of disclosure amongst post-partum women who initiated ART during pregnancy in Cape Town, South Africa. Forty-seven semi-structured interviews with post-partum women were conducted as part of the Maternal Child Health-Antiretroviral Therapy (MCH-ART) study. Primary elements of disclosure were coded and interpreted according to dominant themes and subthemes. Disclosure was commonplace in the sample, ranging from widely disclosing status (rare); to disclosing to some family, friends and partners; to tacit disclosure, where participants took medication in front of others without explicitly discussing their status. Women described reasons for non-disclosure in terms of not being ready, fear of negative reactions (including violence and loss of financial support), and fear of their status being widely known. Self-reported adherence was uniformly high throughout the range of disclosure. Even those who made special efforts to avoid disclosure, such as attending clinics distant from their homes, reported good adherence. Those who disclosed experienced a range of responses to their disclosure, from support to shunning. Despite access to ART, stigma remained a persistent feature in descriptions of disclosure, particularly in relation to partner disclosure. Our findings suggest that disclosure is not always positive and adherence can be maintained within a wide range of disclosure behaviours. It is important that clinic settings allow women to retain control over their disclosure process.