A model for HIV disclosure of a parent's and/or a child's illness.

HIV prevalence in Kenya remains steady at 5.6% for adults 15 years and older, and 0.9% among children aged below 14 years. Parents and children are known to practice unprotected sex, which has implications for continued HIV spread within the country. Additionally, due to increased accessibility of antiretroviral therapy, more HIV-positive persons are living longer. Therefore, the need for HIV disclosure of a parent's and/or a child's HIV status within the country will continue for years to come. We conducted a qualitative phenomenological study to understand the entire process of disclosure from the time of initial HIV diagnosis of an index person within an HIV-affected family, to the time of full disclosure of a parent's and/or a child's HIV status to one or more HIV-positive, negative, or untested children within these households. Participants were purposively selected and included 16 HIV-positive parents, seven HIV-positive children, six healthcare professionals (physician, clinical officer, psychologist, registered nurse, social worker, and a peer educator), and five HIV-negative children. All participants underwent an in-depth individualized semistructured interview that was digitally recorded. Interviews were transcribed and analyzed in NVivo 8 using the modified Van Kaam method. Six themes emerged from the data indicating that factors such as HIV testing, living with HIV, evolution of disclosure, questions, emotions, benefits, and consequences of disclosure interact with each other and either impede or facilitate the HIV disclosure process. Kenya currently does not have guidelines for HIV disclosure of a parent's and/or a child's HIV status. HIV disclosure is a process that may result in poor outcomes in both parents and children. Therefore, understanding how these factors affect the disclosure process is key to achieving optimal disclosure outcomes in both parents and children. To this end, we propose an HIV disclosure model incorporating these six themes that is geared at helping healthcare professionals provide routine, clinic-based, targeted, disclosure-related counseling/advice and services to HIV-positive parents and their HIV-positive, HIV-negative, and untested children during the HIV disclosure process. The model should help improve HIV disclosure levels within HIV-affected households. Future researchers should test the utility and viability of our HIV disclosure model in different settings and cultures.

A rapid assessment of post-disclosure experiences of urban HIV-positive and HIV-negative school-aged children in Kenya.

There has been limited involvement of HIV-negative children in HIV disclosure studies; most studies conducted on the effects of disclosure on children have been with HIV-positive children and HIV-positive mother-child dyads. Seven HIV-positive and five HIV-negative children participated in a larger study conducted to understand the lived experiences of HIV-positive parents and their children during the disclosure process in Kenya. In this study, the experiences of these 12 children after receiving disclosure of their own and their parents' illnesses respectively are presented. Each child underwent an in-depth qualitative semi-structured digitally recorded interview. The recorded interviews were transcribed and loaded into NVivo8 for phenomenological data analysis. Five themes emerged from the data, indicating that HIV-positive and negative children appear to have differing post-disclosure experiences revolving around acceptance of illness, stigma and discrimination, medication consumption, sexual awareness, and use of coping mechanisms. Following disclosure, HIV-negative children accepted their parents' illnesses within a few hours to a few weeks; HIV-positive children took weeks to months to accept their own illnesses. HIV-negative children knew of high levels of stigma and discrimination within the community; HIV-positive children reported experiencing indirect incidences of stigma and discrimination. HIV-negative children wanted their parents to take their medications, stay healthy, and pay their school fees so they could have a better life in the future; HIV-positive children viewed medication consumption as an ordeal necessary to keep them healthy. HIV-negative children wanted their parents to speak to them about sexual-related matters; HIV-positive children had lingering questions about relationships, use of condoms, marriage, and childbearing options. All but one preadolescent HIV-positive child had self-identified a person to speak with for social support. When feeling overwhelmed by their circumstances, the children self-withdrew and performed positive activities (e.g., praying, watching TV, listening to the radio, singing, dancing) to help themselves feel better. Many HIV-affected families have a combination of HIV-positive and negative siblings within the household. Pending further studies conducted with larger sample sizes, the results of this study should assist healthcare professionals to better facilitate disclosure between HIV-positive parents and their children of mixed HIV statuses.

HIV-positive parents, HIV-positive children, and HIV-negative children's perspectives on disclosure of a parent's and child's illness in Kenya.

HIV disclosure from parent to child is complex and challenging to HIV-positive parents and healthcare professionals. The purpose of the study was to understand the lived experiences of HIV-positive parents and their children during the disclosure process in Kenya. Sixteen HIV-positive parents, seven HIV-positive children, and five HIV-negative children completed semistructured, in-depth interviews. Data were analyzed using the Van Kaam method; NVivo 8 software was used to assist data analysis. We present data on the process of disclosure based on how participants recommended full disclosure be approached to HIV-positive and negative children. Participants recommended disclosure as a process starting at five years with full disclosure delivered at 10 years when the child was capable of understanding the illness, or by 14 years when the child was mature enough to receive the news if full disclosure had not been conducted earlier. Important considerations at the time of full disclosure included the parent's and/or child's health statuses, number of infected family members' illnesses to be disclosed to the child, child's maturity and understanding level, and the person best suited to deliver full disclosure to the child. The results also revealed it was important to address important life events such as taking a national school examination during disclosure planning and delivery. Recommendations are made for inclusion into HIV disclosure guidelines, manuals, and programs in resource-poor nations with high HIV prevalence.