I spent last December visiting Kenya (that explains my lack of posts since World AIDS Day – sorry). While there, I spoke to staff at various AIDS Service Organizations and International Non-profit Organizations about the issues and challenges encountered during HIV disclosure in Kenya and other African countries. From those conversations and the networking we share here on my Blog, it is quite clear that HIV disclosure is a global challenge: Same issue different locations.
I therefore want to revisit my article titled “HIV-positive parents, HIV-positive children, and HIV-negative children’s perspectives on disclosure of a parent’s and child’s illness in Kenya,” to highlight six key HIV disclosure factors that participants in that study expressed should be considered during the HIV disclosure process.
Here are the six key HIV disclosure factors:
When considering HIV disclosure to HIV-positive and HIV-negative children, parents and healthcare professionals should take into account the following six key HIV disclosure factors:
HIV disclosure of a parent’s and/or a child’s illness is a parent’s decision to be carried out at a time when he or she judges him or herself and his or her child(ren) ready for disclosure. No one should take the decision away from a parent by disclosing to a child without permission, but healthcare professionals should regularly advice parents on the importance of timely HIV disclosure. While parents may want to take their time to disclose to their children, they should also remember that it is a child’s right to receive timely disclosure of his or her own illness and/or disclosure of his or her parent’s or parents’ illnesses. Parents and healthcare professionals should seek to attain the “perfect balance” between a parent’s need to delay disclosure to the “right time” and a child’s right to receive timely disclosure.
HIV disclosure is a process that should be handled very slowly and extremely carefully. No child should receive a sudden or abrupt disclosure of his, hers, and/or a parent’s/parents’ illnesses as this may lead to many problems within the home and a poor parent-child relationship.
When planning disclosure, the parent and the healthcare professional who is assisting him or her, should determine if disclosure will occur for just a child’s illness, a parent’s illness, both parents’ illnesses, a sibling or siblings’ illnesses, and also the cause of death of any persons in the family who may have passed away from an AIDS-related illness. The parent and healthcare professional should judge if these disclosures should occur one or a few of them over time; or at the same time if a child is judged capable of absorbing all the information.
If a child and/or a parent is in poor health, parents and healthcare professionals should consider postponing the actual full disclosure session until a time when the child and/or parent’s health is improved. However, if a child has poor health due to poor adherence to ART, then that child may benefit from counseling followed by disclosure to boost his or her adherence to ART. If the parent is the one who is unwell and needs help around the house, it may be wise to counsel and disclose to his or her older children so they can support the parent, take care of their younger siblings, assist with chores in the house, and take the parent for clinic and/or hospital visits.
As mentioned before, HIV disclosure is a process. Delivery of HIV disclosure information to a child should take into account his or her understanding and maturity level. Some children develop and mature faster than others; this is why healthcare professionals working in the HIV disclosure field do not provide a definite age when a child should receive disclosure. Participants in the study expressed that the HIV disclosure process to a child should start at 5 years with increasing truthful information about the illness provided over time to him or her until he or she reaches 9 years old. Participants in the study thought that by 10 years, children (regardless of their HIV status) were able to understand information about the illness, and they were mature enough to receive full disclosure by 14 years of age. Therefore, it appears that a child can receive disclosure between 10-14 years as soon as he or she shows understanding of the illness or is mature enough to receive disclosure.
Lastly, it is important to decide in advance who will actually tell the child about his, hers, a sibling’s, and a parent’s or both parents’ illnesses. Most HIV-positive parents in the study wanted to be the ones telling their children. HIV-negative children wanted either their parents or a person close to them (e.g., an older sibling or aunt) to tell them. HIV-positive children wanted a healthcare professional trained in disclosure to tell them. During HIV disclosure planning, parents and healthcare professionals should take these needs expressed by participants in this study, and discuss who is best suited to disclose to a child.
Want to learn more about the participants advice on these six key HIV disclosure factors? Please read the full article which has the participants interview quotes here. If you only want to read the research highlights, I have also condensed the research article into a research brief here.
For additional HIV disclosure information, please read my other posts that are closely related to this one:
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