Child, Parent, and Healthcare Professionals' Perspectives on HIV Infection Status Disclosure to Children

HIV infected parents face great challenges when contemplating and performing disclosure of theirs and their children's illnesses to their infected and noninfected children. HIV disclosure guidelines for a parent's and child's illness do not exist in resource-poor nations. This hinders and impedes the delivery of disclosure from parent to child. This qualitative phenomenological study, based on the disease progression theory and the consequence theory of HIV disclosure, was conducted to understand the lived experiences of HIV-infected parents and their children living in Kenya before, during, and after disclosure of a parent's and child's HIV infection status. Thirty four participants consisting of HIV-positive parents, HIV-positive and negative children, and healthcare professionals completed individualized in-depth semistructured interviews. Interview data was analyzed first using coding for predetermined themes and then coding for emerging concepts. Seven themes emerged that portrayed the HIV disclosure process. The disclosure process is complex and riddled with stigma, discrimination, ART adherence issues, sexuality concerns, questions, emotional reactions, and weighing of the benefits versus the consequences of disclosure. Parents are challenged by disclosure and many times wait years to perform disclosure of theirs and their children's illnesses. Positive social change implications include improved disclosure delivery leading to increased disclosure rates, lower levels of stigma and discrimination, and reduced incidence and prevalence of HIV disease. A call is made for creation of guidelines and manuals for use in resource-poor nations to ease the burden of disclosure for parents and the healthcare professionals who assist them during the process.