Parental disclosure of HIV status: Experiences and perceptions of HIV positive parents in Nairobi, Kenya

Abstract

Background: Research on parental disclosure of HIV status to children is limited, especially in sub-Saharan Africa where most HIV-infected adults reside. Rates of parental HIV disclosure cited in the literature range from 11-50%. We conducted a mixed methods study to examine rates of parental HIV disclosure and explore factors that influence a parent's decision to disclose their HIV status to their children in Nairobi, Kenya. Methods: Among HIV-infected parents enrolled in the ongoing Counseling and Testing for Children at Home (CATCH) study, we determined rates and cofactors of disclosure of parental HIV status to partners, family members and children. The study recruited HIV-infected adults from HIV treatment clinics and enrolled those who had at least one <12 year old child of unknown HIV status. In addition, in-depth interviews were conducted with 6 parents to ascertain perceived barriers and facilitators of the process of disclosing one's HIV status to one's child and factors that influence the decision to disclose. Results: Among 74 adult participants, median age was 35 years (IQR 32-38) with a median of 5 years since HIV diagnosis; most (84%) were female. Although 77% had disclosed their HIV status to their partner, and 55% to another family member, only 4% had disclosed their HIV status to their child (p <0.001 for both comparisons). Participants who had disclosed their HIV status to someone (partner, family member or other person) were more likely to be female, have knowledge of their partner's status, and have a longer time since HIV diagnosis. Five of the six parents interviewed in-depth planned to disclose their status to their children; all mentioned that the child's age or perceived maturity inhibited disclosure and that they feared causing their child anxiety or stress by disclosing their status. Parents mentioned that child sexual activity was a motivator for disclosure, as well as the belief that disclosing was the right thing to do and noted that peer or counseling support would be useful to gain insight on appropriate ways to disclose their status. Conclusions: The decision of parents to disclose their HIV status to their children is more complex than disclosure to other family members and is influenced by concerns regarding the child's ability to understand and process knowledge of their parents' illness and lack of insight on ways to appropriately disclose. Peer groups, counseling, and standardized guidance may be beneficial to facilitate parental disclosure.