HIV Disclosure for Kids

I’ve learned so much about HIV/AIDS since I’ve arrived! The doctors here give daily lectures to nurses and visiting scholars to train them in providing appropriate HIV/AIDS care either at the Baylor clinic or other health clinics. Even though I’m only an undergraduate, I have been grouped with all of Baylor’s visiting scholars (medical students, residents, doctors, nurses, etc.) and have been attending all the lectures. I’ve learned about HIV epidemiology, testing, staging, treatment, and so much more. I almost feel like I can start seeing patients!

One of the most interesting lectures I’ve had was on HIV disclosure, giving by Me Mamakuena, the best disclosure and adherence counselor here at the clinic. Baylor has come up with such a clever way of disclosing HIV status to its pediatric patients. It is done through a picture book and a story. I will give a brief summary.

The story is very interactive. First the patient is shown a picture of a soldier and is asked what they thought it was. The counselor then works with whatever the response was (usually either a guard, a soldier, or a policeman). The next picture shows a child who is surrounded by many soldiers and the counselor explains that the soldiers protect the child from diseases and illnesses. Then, the counselor shows the patient a picture of a monster attacking the soldier and asks the child what he/she thinks is happening. The counselor does not usually tell the younger children the real name of the monster (HIV). The next couple of pictures show the child surrounded by soldiers and monsters and the child surrounded only by monsters. The counselor explains that when all the soldiers are gone, that is when the child feels sick because the soldiers aren’t there to protect him/her.

The next series of pictures show a new and stronger soldier called ARV. ARV causes the monsters to fall asleep. However, it can only do it 12 hours at a time. So the counselor explains that the child must take the ARVs in the morning and at night to keep the monsters asleep all day. The counselor also explains that as long as the child takes the ARVs and the monster is asleep, the child can go to school, play games, grow up, go to college, get married, and live a long and healthy life. The next series of pictures explains the importance of reminding the caregiver to remember to give the ARVs and of disclosing to neighbors and others who can help and the various side effects of the ARVs. To the older patients, the counselor also explains the mode of transmission of HIV.

All the patients at Baylor are given a series of adherence counseling before they are started on ARVs. Although it seems cruel to keep patients from starting ARVs or to take patients with poor adherence off ARVs, it is important to so in order to prevent the development of resistance. The optimal adherence is between 95-100%. However, a little less (even 90%) is bad because the medication not effective against the virus and it’s giving the virus opportunities to develop resistance. Preventing resistance is especially important in low-resource countries because there is a limited number of available drugs. In Lesotho, there are only first-line and second-line ARVs. Once the second-line medications stop working, there are very few options left for those patients.