Transcript The ID Clinic and HIV Education

Child Life and HIV Education
St. Jude Children’s Research Hospital
Katherine Cejda, MS, CCLS
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.
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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
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Basic HIV Education
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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
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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
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”
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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
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HIV Drug Treatment
Nucleoside or Nucleotide Reverse
Transcriptase Inhibitors (NRTIs)
 Protease Inhibitors (PIs)
 Non-Nucleoside Reverse Transcriptase
Inhibitors (NNRTIs)
 Entry/Fusion Inhibitors
 Integrase Inhibitors
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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
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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
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Levels of Assessment
Child Variables
Age
Developmental level
Emotional/Physical Status
•Have they disclosed
their own status? To
whom?
•Developmental
level/cognitive abilities
within
expected range?
•Will disclosure impact
their emotional state?
Levels of
Assessment
•Are supports/
resources available?
•Is health
deteriorating and/or
affecting ability to
parent?
•Will disclosure
impact their preexisting diagnosis?
Caregiver
Variables
Disclosure status
Support System
Coping Mechanisms
Emotional/Physical Status
Family Variables
Communication Style
Cultural Factors
Barriers to
Treatment/Services
•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.
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”
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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”
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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”
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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.”
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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”
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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 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.”
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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”
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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?
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Other Disclosure Experiences
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Patient has not been told their diagnosis
and they are getting close to turning 14.
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Guardian decides they are ready for
disclosure sooner than going through the
whole process in many stages.
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Family has disclosed the diagnosis at
home on their own terms.