Child Life and HIV Child Life and HIV EducationEducation

St. Jude Children’s Research Hospital

Katherine Cejda, MS, CCLS

Perinatal HIV InfectionPerinatal HIV InfectionAt 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.

HIV TestingHIV TestingPregnant women are tested

during pregnancy or while giving birth

ELISA – a screening for HIV antibodies

Western Blot – confirmatory testHIV DNA PCR – most accurate

diagnosis of HIV infection in infants

Basic HIV EducationBasic HIV EducationHuman Immunodeficiency VirusWith treatment, a chronic illnessAttacks the immune system, specifically a

type of white blood cell called a CD4 cellThis 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

Fewer CD4 cells = Weaker immune system

Immune Categories (ages 6 years and older)Above 500 CD4 cells = no immune suppression350-500 CD4 cells = minimal suppression, HIV medications not indicated200-350 CD4 cells = immune system is

weakened, HIV medications are neededLess than 200 CD4 cells = immune system is severely weakened, person at a great risk for opportunistic infections

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”

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

HIV Drug TreatmentHIV Drug TreatmentNucleoside or Nucleotide Reverse

Transcriptase Inhibitors (NRTIs)Protease Inhibitors (PIs)Non-Nucleoside Reverse

Transcriptase Inhibitors (NNRTIs)Entry/Fusion InhibitorsIntegrase Inhibitors

The Disclosure ProcessThe Disclosure ProcessCLS is notified of a patient or family

to begin the processCLS 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

Issues Related to Disclosure Issues Related to Disclosure to the Perinatally Infected to the Perinatally Infected ChildChild

Psychological stressFamily dynamicsOwn disclosure statusSupport systemStigmatismGuiltNeed to “protect” the child

CaregiverVariables

Disclosure statusSupport System

Coping MechanismsEmotional/Physical Status

CaregiverVariables

Disclosure statusSupport System

Coping MechanismsEmotional/Physical Status

Family VariablesCommunication Style

Cultural FactorsBarriers to

Treatment/Services

Family VariablesCommunication Style

Cultural FactorsBarriers to

Treatment/Services

Child VariablesAge

Developmental levelEmotional/Physical Status

Child VariablesAge

Developmental levelEmotional/Physical Status

Levels ofAssessment

Levels ofAssessment

•Developmental level/cognitive abilities within expected range?•Will disclosure impact their emotional state?

•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?

•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?

Levels of AssessmentLevels of Assessment

*Reprinted from “HIV Disclosure: A Protocol to Facilitate HIV Disclosure of Infected Children and Youth by Lewis, J. and Orban, L., 2006.

Diagnostic TeachingDiagnostic TeachingStage 1: Blood CellsStage 2: Immune System and Germs “our body’s defense/protective

system”Stage 3: Medication Compliance “helps keep your body healthy,

workswith your immune system and yourblood cells to keep your body strong”

Stage 4: White Blood Cells “inside everyone’s body is a family of fighter cells communicating and workingtogether to fight off infections” Lymphocytes – “a type of white bloodcell that allows the body to remember andrecognize previous invaders and germs” CD4 cells – “the part of the whiteblood cell family that coordinates the attackon the germs, tells other cells to attack” T cells – “the part of the white bloodcell family that kills and destroys theinvaders”

Stage 5: Unhealthy Part “there is an unhealthy part in your

bodyand you take medications so the unhealthypart won’t make you sick” “the unhealthy part in your body is notsupposed to be there and without

medicine it can harm your healthy cells”

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

Stage 7: More Virus “you were born with the virus in your body” “most viruses are destroyed by the body’simmune system but this virus is very smart andcan hide out in your CD4 cells” “your medicine is also very smart and strongand can stop the virus from making more ofitself” “viral load can tell you and the doctors howmuch virus you have in your body and how wellthe medicine is working” “you will always have this virus in your body but your medicine is strong enough to keep yourviral load very low”

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

Stage 9: Privacy and Confidentiality “There are many people who think wrong thingsabout people with HIV (like they can get HIV from justbeing near someone). There are people trying to teachothers the truth about HIV but until more peoplelearn to be HIV smart then there are only certainpeople you should talk to about having HIV. Your family and I would not want someone who is HIVstupid to hurt your feelings by saying or doing stupidthings. There are some people that you already knowthat are HIV smart and you can go to them when youwant to talk or if you have questions.”

Stage 10: AIDS “Acquired Immunodeficiency Syndrome” “this is when HIV has weakened thebody’s immune system and it’s ability to

fightoff infections” “someone is said to have AIDS when

theirbody’s immune system is no longer strongenough to fight off illness and infection –measured by when someone’s CD4 count drops below 200 and they have an AIDS defining illness”

Common Questions Kids Common Questions Kids AskAskIs 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?

Other Disclosure Other Disclosure ExperiencesExperiencesPatient 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.