Welcome! This site provides information to help HIV-positive parents and healthcare professionals disclose a parent's and/or a child's illness to HIV-positive and negative children/teenagers. Please browse all pages, you are sure to find information to help you disclose. Please return frequently as the site is updated regularly.
I recently had an article published that was on HIV-positive and HIV-negative children’s post-disclosure experiences. As part of the study, I interviewed HIV-positive children about their experiences after receiving disclosure of their own illnesses and HIV-negative children about their experiences after receiving disclosure of their parents’ illnesses. The article is free to access and read and it is located at https://peerj.com/articles/956/.
This study was small and the results may not mirror the experiences of other children who have undergone disclosure. Since many HIV-affected families have both HIV-positive and negative siblings in the household, it is important to understand the post-disclosure experiences of HIV-positive and HIV-negative children in order to offer them the support that they need.
The children’s post-disclosure experiences are summarized in the following figure:
Here are some of the quotes obtained from the interviews with the children:
Please read the entire article at the link above for detailed advice and policy implications. Here are some highlights of the study results and how we can help HIV-positive and negative children cope better with their circumstances post-disclosure.
Acceptance of Illness. Since HIV-positive children took longer to recover post-disclosure, they may need additional support and counseling to accept their illnesses and return to “normal.” Parents need to be advised of these differences in acceptance of illness so they are ready to offer more support to their HIV-positive children.
Stigma and Discrimination: HIV-negative children appear to experience less stigma than their HIV-positive peers. More support needs to be provided to HIV-positive children so that they can better cope with stigma and discrimination. We need to continue community-based HIV awareness activities to try and reduce the stigma and discrimination experienced by HIV-positive persons and their families.
Medication Consumption: HIV-positive children would benefit from support programs that help them maintain adherence so they can stay healthy. HIV-negative children need reassurance that their parents will stay healthy and pay their school fees so they can finish school and support their parents in the future.
Sexual Awareness: HIV-negative children had spoken with their parents about sexual matters and thought it was important for children to discuss sex with parents so that children can take measures to protect themselves from infection. HIV-positive children had not spoken to their parents about sex but rather to healthcare professionals. They had many questions about sex, condoms, relationships, marriage, and childbearing. It is important to encourage parents to speak to all their children about sex. Healthcare professionals should also speak to children about sex. Additionally, HIV-positive children should be regularly updated on new research findings that benefit their well-being such as the use of pre-exposure prophylaxis for prevention of infection in their uninfected partners when conception is desired.
Coping Mechanisms: Children have difficulties coping with their circumstances post-disclosure and are urgently in need of post-disclosure services that help them cope better with their circumstances other than self-isolation. Following disclosure, parents and healthcare professionals should check in with children to see how they are doing. . We need to do more to help them get back to “normal” as quickly as possible.
I encourage you to read the full article to fully understand children’s post-disclosure experiences. Please read my other closely related articles on HIV disclosure experiences: