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.