Parents' phases and children's stages of HIV disclosure

Background: HIV-positive parents are challenged with disclosure to their children. Some do not disclose at all, others disclose to some children, and many take years to fully disclose to all their children. Methods: This qualitative phenomenological study was conducted in Kenya to describe the lived experiences of HIV-positive parents and their children during the disclosure process. Sixteen HIV-positive parents were engaged in in-depth, semi-structured interviews. Interview data were analyzed using the modified Van Kaam method. Results: Parents had a total of 37 living children; 15 HIV-positive, 11 HIV-negative, and 11 of unknown HIV status. Parents went through four phases (secrecy, exploratory, readiness, full disclosure) of disclosure; most admitted needing healthcare professionals’ help to move their children through the three child stages (no, partial, full) of disclosure . Most parents were in between the exploratory and full disclosure phases but had taken years to navigate these phases. Twelve children (HIV-negative and unknown status) had full disclosure of their parents’ illnesses, nine HIV-positive children had full disclosure of their own and their parents’ illnesses, and 10 children (five HIV-positive, four unknown status, and one HIV-negative) had partial disclosure of their own and/or their parents’ illnesses. Parents had indefinite plans to disclose to the six children with no disclosure. Conclusion: Despite being challenged with disclosure, parents progressively navigated the disclosure phases and fully disclosed to the majority of their children. However, the creation of HIV disclosure guidelines, services, and programs would help hasten the time it takes for them to fully disclose to all their children.