Sara Schenkel, MPH, BA

Maternal Disclosure of HIV to Children HIV-Exposed Uninfected in the Botswana-Based FLOURISH Cohort

Sara R. Schenkel MPH 1, Gosego M. Masasa RN2, Samuel W. Kgole RN2, Martha Ngwaca RN2, Martha Ngwaca RN2, Boitshepo Phale RN2, Gaontebale Elija2, Olebogeng Selepe2, Pearl Maano2, Kenanabo Setlhabi2, Kathleen M. Powis MD, MBA, MPH1,3,4

1 Division of Pediatric Global Health, Massachusetts General Hospital, Boston, MA, USA; 
2 Botswana Harvard Health Institute, Gaborone, Botswana, 
3 Departments of Internal Medicine and Pediatrics, Massachusetts General Hospital, Boston, MA, USA, 
4 Department of Immunology and Infectious Diseases, Harvard T.H. Chan School of Public Health, Boston, MA, USA.

Maternal disclosure of HIV status to children, is recommended by the World Health Organization when children reach school age. Maternal disclosure of HIV status to children HIV-exposed in utero who remain uninfected is critical in order for the health and developmental consequences of this exposure to be measured as the adolescent advances into adulthood. We sought to understand timing and barriers of maternal disclosure to their adolescents HIV-exposed uninfected (HEU) in the Botswana-based FLOURISH cohort.

The FLOURISH study is an ongoing prospective longitudinal study recruiting women living with HIV and their children up to 17 years of age born HEU. At study entry, participants enrolling with children ≥ 10 years old self-report if they have disclosed their status to their child. If disclosure has not occurred, the participant is asked every three months about disclosure, intention to disclose, and current reasons for non-disclosure.

Among 334 women enrolled in the study with a child ≥ 10 years of age, 42% had already disclosed at study enrollment. Disclosure to children ≥ 13 years old was more frequent compared to those < 13 years old (37% vs. 72% p<.0001). Disclosure did not vary significantly by whether the participant had disclosed to their partner (p=1.0) or child sex (p=0.92). Women without a college education were more likely to disclose (p = 0.06) and those with lower income were significantly more likely to disclose (p=0.004). Seven percent of women reported no intention to ever disclose. Over the course of the study, 28% of women intending to disclose have subsequently disclosed and 23% of women who initially indicated no intention to disclose have disclosed. The most common reason for nondisclosure was a sense that the child is too immature (86%).

In this high HIV prevalence setting where vertical HIV transmission is <2%, maternal disclosure is occurring but is not universal. Further research is needed to identify culturally appropriate guidance and interventions to support women living with HIV to disclose their status to their children and families, as this might improve their own mental health and allow for ongoing monitoring of the child’s health into adulthood.