Session 6 - Pediatric Adherence to Care and Treatment and Pediatric Disclosure

Tygerberg Experience & ICAP Approach:  Nocawe Frans of the Department of Social Work at Tygerberg Children’s Hospital (TCH), Helena Rabie, Head of the HIV Family Clinic of TCH, and Justin Engelbrecht of the TCH pharmacy, described key elements of a comprehensive pediatric adherence program including preparation activities, counseling and supportive services, adherence monitoring, and appointment/ patient tracking systems. They shared experiences and approaches to giving medication to
infants and children. 

An optional Kaletra taste-test followed.  Kaletra (lopinavir/ritonavir) is a protease inhibitor commonly used to treat children with HIV.  At ICAP’s programs, Kaletra is administered in oral solution as tablets are not readily available.  The taste of Kaletra oral solution, which is reportedly unpleasant to many, may present an obstacle to adherence for children.  The taste-test gave participants an opportunity to experience for themselves this taste.

Nocawe, Helena, and Justin then described Tygerberg’s experiences in addressing
the complex issues around disclosure of HIV status to an HIV infected child, outlining the pros and cons of disclosure, framing disclosure as an ongoing process, describing a
developmentally appropriate approach to disclosure, outlining family responses and expectations around disclosure, listing obstacles to disclosure and sharing Tygerberg approaches to answering a child’s questions about the illness in an age appropriate manner.

Issues raised during Question & Answer session:

  • Nocawe’s approach to Disclosure
    • Nod, actively listen, allow people to feel comfortable talking with you.  Emphasize to caretakers that if they don’t understand something, like how to open a childproof bottle, they should come back to the clinic to ask for help.
    • Appointment book is a simple notebook; nothing fancy.
    • Determine the child’s situation, including legal situation with caregiver.
    • Use simple words, getting to the level of the child’s understanding.  To draw a noncommunicative child out, start by playing or using drawings.  If you join a child in play, you may eventually get her to talk.  Then start off by asking questions, not by telling her what to do.
    • Prepare an activity for immediately after disclosure—something like going to a park or playing together, so you can gauge the child’s reaction to disclosure.
    • Age of disclosure – Nocawe uses a long, ongoing process, starting by asking the child about her family around age 5.  Nocawe doesn’t introduce the words HIV/AIDS until age 9 or 10.  If the parents or caregivers do not disclose, but the child is growing up, age 14 or so, and Nocawe thinks she really needs to know, she starts talking with the parent over a series of 3-4 sessions, trying to convince them.  She tells the parent that on the third or fourth session, they should try to disclose to the child.  Nocawe avoids disclosing to the child herself, because it is important to build the relationship between the child and parent(s).  She wants to emphasize the importance of family communication.  She has never actually disclosed to a child against the parents’ wishes.  One set of parents refused to tell their child until he was 18 years old.  She tries to help empower the parents, often by introducing them to support groups.  There are traditions preventing wives from leaving the house to talk with other women, so the support group can be an important outlet and resource. 
    • It is important how a child learns about HIV/AIDS.  One child she worked with was being raised by a non-relative, and was told about his status.  When he got cut in a playground, he screamed, “please don’t touch me, I’ve got AIDS!”  This upset the caretaker, who did not want to take care of the child anymore, as she was upset that he had disclosed to all of his classmates.
  • Adherence
    • Don’t be too rigid about drug administration.  Sometimes parents say they were supposed to give a dose at 7pm, but they only remembered this at 8pm, and by then it was too late to give the dose so they didn’t give it at all.
    • Ensure that if a child vomits, the caretaker gives another dose.
    • Assume nonadherence, and ask questions accordingly, to determine how to elicit better adherence.  For example, ask if a family had company over such that they forgot about the medication time, etc.
    • If a child refuses to take medicine at 7pm every day, the caregiver might start playing with him at 6pm to get him in a good mood.  So by 7pm, before he can think of throwing a tantrum, he will have taken his medicine. 
    • One caregiver mother has to chase her child to give him drugs, and they are both crying and upset while this is happening.  But the father can administer the medications without such trouble.  So when Tygerberg providers learned this, they asked the father to administer the drugs for the next few weeks.
    • Pharmacy
    • There needs to be clear communication between the pharmacy and the clinic.  The pharmacist is very strict, and if the clinic requests a change in dosage for a patient, he insists that the prescriber mark this change in two ways so that the pharmacy can be sure that the change was intentional.

Caregivers’ Perspective
Three mothers, caregivers for children with HIV, shared family perspectives on adherence.  They described the challenges of caring for a child with HIV, adherence issues, and challenges in communicating with providers and accessing services.
One mother was 31. She had fraternal twins.  The boy twin passed away at 3 months, and the girl twin was now 2 years old and HIV-infected.  Because Kaletra tastes bitter, the girl does not want to take it.  When the girl was 7 years old, she saw HIV drugs in the refrigerator, and later saw a photo of the same drug in the newspaper.  The girl asked her mother about this and found out about her status.  Much of the time, the girl is matter-of-fact about her status.  At age 8, while in first grade, she asked her mother for a note disclosing her HIV status and explaining that this is why she needs to go to the bathroom often.  The girl also expresses frustration with her mother sometimes, asking, “why didn’t you use a condom?” to which the mother responded that she did not know she was HIV positive herself, and still does not know how she contracted it.  The mother is now an advocate, talking with her community and with researchers about HIV/AIDS.  She concluded by reading a poem by her daughter to her brother, the boy twin that passed away.

A second mother was 28 years old, and was diagnosed with HIV in 2001, at age 22.  Her initial test was negative, so she did not get PMTCT.  Her son was born after 7 months of pregnancy and was a tiny, sick baby.  At 6 months of age, he was hospitalized with asthma and intestinal problems and had to be on oxygen for a year until medication helped him recover.  At this point, the mother was tested again, and this time she was positive.  When she got a job as a counselor, her own mother took care of the baby.  When the baby’s health began to fail again, the mother suspected that the grandmother was not administering medication.  She spied on the grandmother and son and confirmed her suspicions.  He went back to live with his mother and now she is able to administer medication to her son directly.  When age 4, he would remind his mother when it was time for medication, but now that he is 6, he is resistant to taking it.  The mother has disclosed to some people in her life, but not others.

A third mother was 36 years old, with 4 boys, ages 17, 14, 10, and 5.  In 2002, after she and her youngest son developed TB, and she developed arthritis, they were diagnosed with HIV.  Her privacy was violated; her family members told all her children about their mother’s status.  She took all her children to the library to research HIV/AIDS, and told them to trust only her in terms of getting information about HIV/AIDS.  During this library research, she learned that she should test all her children for HIV.  Although it was traumatic, she had them all tested, and the older three were HIV negative.  Although she is happily married, her husband was very unsupportive at first.  Because she and her youngest had TB, everyone in the household needed prophylaxis, but her husband refused to take it, and he smoked cigarettes in their one-room house.  He was unemployed and unmotivated, so she had to work odd jobs and take time off work to pick up medications.

Adherence and Disclosure: Cross-Country Groups
This activity created 8 discussion groups with members from each country in order to maximize and leverage ICAP’s collective adherence and disclosure experience.  The groups were each assigned an aspect of pediatric adherence or disclosure to discuss.  They then proposed solutions and reported back to the large group, after which country teams convened for a workplanning session on adherence and disclosure, ideally incorporating aspects of the cross-country suggestions into their workplans.

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