A qualitative study of the barriers and enhancers to retention in care for pregnant and postpartum women living with HIV

Abstract

Retention in care is a major challenge for pregnant and postpartum women living with HIV (PPHIV) in the prevention of mother-to-child HIV transmission (PMTCT) continuum. However, the factors influencing retention from the perspectives of women who have become lost to follow-up (LTFU) are not well described. We explored these factors within an enhanced sub-cohort of the East Africa International Epidemiology Databases to Evaluate AIDS Consortium. From 2018–2019, a purposeful sample of PPHIV ≥18 years of age were recruited from five maternal and child health clinics providing integrated PMTCT services in Kenya. Women retained in care were recruited at the facility; women who had become LTFU (last visit >90 days) were recruited through community tracking. Interview transcripts were analyzed thematically using a social-ecological framework. Forty-one PPHIV were interviewed. The median age was 27 years, 71% were pregnant, and 39% had become LTFU. In the individual domain, prior PMTCT experience and desires to safeguard infants’ health enhanced retention but were offset by perceived lack of value in PMTCT services following infants’ immunizations. In the peer/family domain, male-partner financial and motivational support enhanced retention. In the community/society domain, some women perceived social pressure to attend clinic while others perceived pressure to utilize traditional birth attendants. In the healthcare environment, long queues and negative provider attitudes were prominent barriers. HIV-related stigma and fear of disclosure crossed multiple domains, particularly for LTFU women, and were driven by perceptions of HIV as a fatal disease and fear of partner abandonment and abuse. Both retained and LTFU women perceived that integrated HIV services increased the risk of disclosure. Retention was influenced by multiple factors for PPHIV. Stigma and fear of disclosure were prominent barriers for LTFU women. Multicomponent interventions and refining the structure and efficiency of PMTCT services may enhance retention for PPHIV.

Effects of the COVID-19 pandemic on late postpartum women living with HIV in Kenya

“…At the time women were enrolled in the parent study, their median (IQR) age was 32 (27)(28)(29)(30)(31)(32)(33)(34)(35) years, 51% had completed secondary or tertiary school, 79% were married or cohabitating,…”

“…From March 2018 to February 2019, EA-IeDEA conducted a prospective, observational study to determine the factors influencing retention in prevention of mother-to-child HIV transmission (PMTCT) care for pregnant and early postpartum WHIV who were retained in care and lost to follow-up (LTFU, defined as last clinic visit >90 days) [ 32 , 33 ]. Eligibility criteria for WHIV in this parent study were: (i) age ≥18 years, (ii) pregnant or early (i.e.…”

Preferences of Pregnant and Postpartum Women for Differentiated Service Delivery in Kenya

“…23 However, we previously investigated women's preferences for such a model and found that in our setting, women prefer facility-based services, which is partly driven by a perceived risk of HIV disclosure and stigma in the community. 13 A facility-based DSD model would also require minimal changes to the program infrastructure. Thus, we selected the following attributes and levels relevant to facility-based, individual DSD: visit frequency during pregnancy (every month vs. every 2 months); visit frequency during the first 12 months postpartum (every month vs. only during infant immunization visits, defined above); meeting with a mentor mother (at each clinic visit vs. not at each visit but as needed based on the woman's preference or as determined by the care team); meeting with a clinician (same levels as for the mentor mother attribute); and basic consultation cost (0, 50, or 100 Kenya Shillings [KSh]).…”

“…Prevention of mother-to-child transmission of HIV (PMTCT) is a primary concern for this population, so it is conceivable that less intensive health services may not be preferred. 13 Previous DCEs have also focused on individuals living with HIV who are clinically stable without sampling individuals considered “at risk.” The latter group may have distinct preferences that should be accounted for in any HIV service model.…”

“…With the superior effectiveness of dolutegravir-containing ART and emerging data demonstrating minimal vertical transmission among pregnant and breastfeeding women who are virally suppressed, DSD could play a pivotal role in easing access to services for PPWH while preserving good clinical outcomes. 13 , 15 , 16 Understanding women's preferences for DSD can also help define the future role of long-acting ART for this population. The objective of this study was to determine the preferences of PPWH for HIV services in Kenya to guide the adaptation of DSD to this population.…”