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 fol-
low-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 themat-
ically 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 envi-
ronment, 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 refin-
ing the structure and efficiency of PMTCT services may enhance retention for PPHIV.