Child Life and HIV Education

1. Child Life and HIV Education St. Jude Children’s Research Hospital Katherine Cejda, MS, CCLS

2. Perinatal HIV Infection • At birth, around 26% of children are born infected if no treatment was done during the pregnancy of an HIV+ mother. • If HAART is taken during pregnancy, about 8% of children are born infected. • If the mother takes HAART throughout her pregnancy, has a c-section, and does not breast feed, then the chances are less than 1% that the baby will be infected with HIV.

3. HIV Testing • Pregnant women are tested during pregnancy or while giving birth • ELISA – a screening for HIV antibodies • Western Blot – confirmatory test • HIV DNA PCR – most accurate diagnosis of HIV infection in infants

4. Basic HIV Education • Human Immunodeficiency Virus • With treatment, a chronic illness • Attacks the immune system, specifically a type of white blood cell called a CD4 cell • This virus is smart and hides in the CD4 cells, out of reach from virus killing antibodies • The virus attaches to CD4 cells, enters the cells, uses the cell to make a copy of itself and destroys the CD4 cell in the process, the virus copy then goes on with the replication process of destroying fighter cells and making more and more virus

7. Fewer CD4 cells = Weaker immune system Immune Categories (ages 6 years and older) Above 500 CD4 cells = no immune suppression 350-500 CD4 cells = minimal suppression, HIV medications not indicated 200-350 CD4 cells = immune system is weakened, HIV medications are needed Less than 200 CD4 cells = immune system is severely weakened, person at a great risk for opportunistic infections

9. Viral load – the amount of HIV copies present in a milliliter of blood • Without treatment, HIV constantly replicates and viral load increases • The more virus in the blood, the faster the CD4 count can fall • 50 copies or less/ml = “undetectable”

10. Antiretroviral drugs – help to manage and control the virus by slowing down or inhibiting HIV’s ability to replicate • Antiretroviral naïve – patient has not begun medication treatment for HIV • Medication adherence – to give medications the best chance of working, adherence must happen 95% (can only miss one to two doses a month) • Medication resistance – the virus is no longer suppressed as well by a certain medication, the virus can now work around that medication, must change to a new combination of drugs

12. HIV Drug Treatment • Nucleoside or Nucleotide Reverse Transcriptase Inhibitors (NRTIs) • Protease Inhibitors (PIs) • Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTIs) • Entry/Fusion Inhibitors • Integrase Inhibitors

14. The Disclosure Process • CLS is notified of a patient or family to begin the process • CLS meets with guardian individually • CLS shares goals for disclosure process • Plan is put into place to begin diagnostic teaching and appointment made to work with child • Communication with care team about the plan

15. Issues Related to Disclosure to the Perinatally Infected Child • Psychological stress • Family dynamics • Own disclosure status • Support system • Stigmatism • Guilt • Need to “protect” the child

16. Levels of Assessment • Developmental level/cognitive abilities within expected range? • Will disclosure impact their emotional state? • Have they disclosed their own status? To whom? • Are supports/ resources available? • Is health deteriorating and/or affecting ability to parent? • Will disclosure impact their pre- existing diagnosis? • Open vs. closed communication? • How are secrets/personal information perceived within the culture? • Do issues such as transportation, childcare or health affect adherence to care? *Reprinted from “HIV Disclosure: A Protocol to Facilitate HIV Disclosure of Infected Children and Youth by Lewis, J. and Orban, L., 2006.

17. Diagnostic Teaching • Stage 1: Blood Cells • Stage 2: Immune System and Germs “our body’s defense/protective system” • Stage 3: Medication Compliance “helps keep your body healthy, works with your immune system and your blood cells to keep your body strong”

18. Stage 4: White Blood Cells “inside everyone’s body is a family of fighter cells communicating and working together to fight off infections” Lymphocytes – “a type of white blood cell that allows the body to remember and recognize previous invaders and germs” CD4 cells – “the part of the white blood cell family that coordinates the attack on the germs, tells other cells to attack” T cells – “the part of the white blood cell family that kills and destroys the invaders”

19. Stage 5: Unhealthy Part “there is an unhealthy part in your body and you take medications so the unhealthy part won’t make you sick” “the unhealthy part in your body is not supposed to be there and without medicine it can harm your healthy cells”

20. Stage 6: Virus “the unhealthy part in your body is called a virus” “in some people’s bodies is a virus that tries to kill the fighter cells while it makes more and more of itself” “What would happen if you had lots of the virus and not very many fighter cells? Yes, you would get sick, but that is why you take medicine - to stop the virus from making more of itself and help you keep your fighter cells and stay healthy.”

21. Stage 7: More Virus “you were born with the virus in your body” “most viruses are destroyed by the body’s immune system but this virus is very smart and can hide out in your CD4 cells” “your medicine is also very smart and strong and can stop the virus from making more of itself” “viral load can tell you and the doctors how much virus you have in your body and how well the medicine is working” “you will always have this virus in your body but your medicine is strong enough to keep your viral load very low”

22. Stage 8: HIV “the name of the virus in your body is called HIV, or Human Immunodeficiency Virus” discussion of what immunodeficiency means – tie it back to the idea that the virus is trying to attack a part of the immune system (the CD4 cell), which would make the immune system deficient or weak discussion of the modes of transmission

23. Stage 9: Privacy and Confidentiality “There are many people who think wrong things about people with HIV (like they can get HIV from just being near someone). There are people trying to teach others the truth about HIV but until more people learn to be HIV smart then there are only certain people you should talk to about having HIV. Your family and I would not want someone who is HIV stupid to hurt your feelings by saying or doing stupid things. There are some people that you already know that are HIV smart and you can go to them when you want to talk or if you have questions.”

24. Stage 10: AIDS “Acquired Immunodeficiency Syndrome” “this is when HIV has weakened the body’s immune system and it’s ability to fight off infections” “someone is said to have AIDS when their body’s immune system is no longer strong enough to fight off illness and infection – measured by when someone’s CD4 count drops below 200 and they have an AIDS defining illness”

25. Common Questions Kids Ask • Is it a virus like a computer virus? • Will the virus ever go away? • Do you take (this) medicine, too? • What part of the body does the medicine make stronger? • Is the medicine stronger than the virus? • Can you die from a virus? • Can you get the virus from drinking after someone?

26. Other Disclosure Experiences • Patient has not been told their diagnosis and they are getting close to turning 14. • Guardian decides they are ready for disclosure sooner than going through the whole process in many stages. • Family has disclosed the diagnosis at home on their own terms.