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Pediatric HIV
November 13, 2007
What is HIV?
• Human Immunodeficiency Virus: A singlestranded retrovirus that attacks the human
immune system. Specifically a lentivirus, which
is a type of retrovirus. Means: Slow virus
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Uses CD4+ “helper T-cells” to replicate itself
Destroys T-cells
Compromises immune functioning
Increases risk of opportunistic infection
HIV/AIDS Classification
• The CDC definition of AIDS includes all HIVinfected individuals with CD4 counts of < 200
cells/µL as well as those with certain HIV-related
conditions and symptoms
• The WHO system classifies HIV disease on the basis
of clinical manifestations that can be recognized and
treated by clinicians in diverse settings
Prevalence of HIV/AIDS
HIV/AIDS Impact (2005)
Worldwide:
• 39.5 million people with HIV/AIDS
– 38.0 million adults
– 2.2 million children younger than 15 years living with
HIV/AIDS
• In 2005, HIV/AIDS-associated illnesses caused 3.1
million deaths
(Center for Disease Control; CDC)
Prevalence of HIV/AIDS
Worldwide Continued:
• This includes an estimated 570,000 children
younger than 15 years
• Approximately 15.0 million children
younger than 15 years have been orphaned
worldwide due to the premature deaths of
HIV-infected parents
World Health Organization (WHO), National Institutes of Mental Health (NIMH)
Pediatric HIV
• 1982 – 1st acknowledged case of HIV in
children
• Modes of transmission
– Vertical (mother to child)
• Pregnancy, delivery, breast feeding
– Horizontal (through bodily fluids)
• Unprotected sex, drug use, blood transfusion
Impact of HIV on children
• From 1992-2004: 9,443 children are estimated to have
been diagnosed with HIV in the U.S.
• 92.9% resulted from perinatal transmission
• In 2004, an estimated 3,927 children were living with
HIV/AIDS, of whom:
63% African American
21.6% Hispanic
14.2% Caucasian
<1% Asian Pacific/Islander or American Indian
Treatment Evolution for HIV/AIDS
• Medical Treatment Evolution
– Monotherapy in early 1990s
– Dual agent approach by mid 1990’s
– Combination antiretroviral therapy
(ART), also called highly active
antiretroviral therapy (HAART), since
late 1990s: 3 or more agents
Highly Active Anti-Retroviral
Therapy
• HAART
• Often involves a complex medical regimen
• Has produced dramatic & significant
improvement in prognosis for HIV infection
• But has also emphasized the importance of:
• Adherence
• Medication Interactions
HIV/AIDS ARV Medications
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Nucleoside Reverse Transcriptase
Inhibitor (nRTIs)
Abacavir (Ziagen)
(Didanosine (Videx)
Emtricitabine (Emtriva)
Lamivudine (Epivir)
Stavudine (Zerit)
Tenofovir (Viread)
Zalcitabine (Hivid)
Zidovudine (AZT)
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Non-Nucleoside Reverse
Transcriptase Inhibitor (NNRTIs)
Efavirenz (Sustiva)
Nevirapine (Viramune)
Delavirdine (Rescriptor)
• Protease inhibitors
Amprenavir (Agenerase)
Atazanavir (Reyataz)
Darunavir (Prezista)
Fosamprenavir (Lexiva)
Indinavir (Crixivan)
Lopinavir/ritonavir (Kaletra)
Nelfinavir (Viracept)
Ritonavir (Norvir)
Saquinavir (Fortovase)
Tipranavir (Aptivus)
• Fusion Inhibitor
T20 (Fuzeon)
HIV/AIDS: A Challenging Patient
Population
• High degree of stigma
• Lower Socio-Economic Status
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Most needs
Fewest resources
Increased risk of violence
Increased “chaos” in daily lives
• Affecting adherence to ART
• Not showing for appointments
Adherence, Disclosure, &
Bereavement
The Role of the Pediatric
Psychologist
Adherence
• Wide variability in adherence rates
– Watson & Farley (1999)
• 52% of children under 12 at least 75% adherent
– Feingold et al. (2000)
• 54% of children reported “good” adherence
– Boni et al. (2000)
• 24% missed at least one dose in past 3 days
• 44% missed at least one dose since last clinic visit
– Temple et al. (2001)
• Pill counts & pharmacy refills: 19-95% adherence
– Van Dyke et al. (2002)
• 68% to 84%
Adherence
• Why problematic?
– Higher non-adherence associated with
increased viral load ( health)
– Greater immunosuppression
– Development of medication resistance
Adherence
• Critical to suppress viral load:
Adherence of 95% to drug regimen: 81% success rate
Adherence of 90-95% to drug regimen: 64% success rate
Adherence of 80-90% to drug regimen: 50% success rate
Adherence of 70-80% to drug regimen: 24% success rate
Adherence of <70% to drug regimen: 6% success rate
Predictors of Adherence
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Demographics
Available Social Support
Child and Parent Health Beliefs
Caregiver and Child Psychosocial
Functioning
Forms of Disclosure
• Disclosure to self
– A child receiving information about their illness
• Preschoolers: 0% of children with HIV vs. 100% of
children with cancer were told of their diagnosis
(Hardy et al., 1994)
• 17-66% of children have received full or partial
disclosure (Instone, 2000, Mialky et al., 2001)
• Disclosure took place 2-8 years after diagnosis
(Instone, 2000)
Forms of Disclosure
• Disclosure of others
– Receiving information about a parent’s illness
• May involve disclosure of additional info: IV drug use,
infidelity, adoption
• 30-57% of children whose mothers are infected have been
informed of mothers’ diagnosis (Murphy et al., 2001; Simoni et
al., 2000)
• Disclosure to others
– Immediate family, other family & friends, school
officials
Why are Parents Reluctant to Tell
their Child that He/She is HIVInfected?
Reasons Parents are Reluctant
• Fear of impact of disclosure on child’s
psychological status and emotional health
– Reduce child’s will to live
– Leads to depression in child
• Fear of inadvertent disclosure to others by child
– Child cannot keep secrets
• Protecting child from social rejection and stigma
• Guilt about transmission
– Association with sexual taboos
AAP, Pediatrics 1999;103:164
Lipson M, Hasting Ctr Rpt 1993;23:6
Reasons Parents are
Reluctant (cont’d)
• Difficulty coping with their own illness or illness
of other loved ones
• Established coping strategies within families
– Traditional silence around illness and disease
– Limited communication within families
– Denial as coping strategy
• Belief that child will not understand
• Children as hope for future
– Avoid thinking of HIV keeps fatality at bay
• Other
AAP, Pediatrics 1999;103:164
Lipson M, Hasting Ctr Rpt 1993;23:6
What are Reasons to Disclose a
Child’s HIV Status?
Reasons to Disclose
• Undisclosed children may
– Develop fantasies about their illness
– Feel isolated from sources of support
– Learn HIV status inadvertently
• Children often want and ask to know what is wrong
– May already know diagnosis but are keeping the secret/
waiting for the parent to tell
• With other chronic and fatal illnesses children who
know their status have
– Higher self-esteem
– Lower rates of depression
– Lower rates of parental depression
Reasons to Disclose (con’t)
• Recognition of Autonomy
– Children achieve mastery over their lives as
they age
• Ongoing and evolving process of involvement with
their illness and it’s consequences
AAP, Pediatrics 1999;103:164
Lipson M, Hasting Ctr Rpt 1993;23:6
Reasons to Disclose
• There is general consensus among
experienced pediatric HIV providers that
children should be informed of their
diagnosis.
• Primarily US and European experience
• Emerging experience in Africa and other high
prevalence settings
– Accelerated by the introduction of ARV treatment
Imagine your child was HIV+. At
what age would you tell them?
Not “When,” but “How”
• Disclosure is more than revealing HIV status
• Entails an ongoing discussion of health and
health-related activities
– Parents/caregivers should be encouraged to begin and
continue a dialogue about health issues with their child
beginning at an early age
• Simple explanation of nature of illness for youngest children
• Disclosure about nature and consequences for older children
– When to use the words “HIV/AIDS” will vary with the
needs of the child and family
Not “When,” but “How” (cont’d)
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Let the child be the guide
Individualize the approach - tailor discussion
according to child's:
1. Age
2. Cognitive development
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Use tools and language for different developmental capacities:
drawing, storytelling, play, drama
3. Level of maturity
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Assess coping skills of the child
4. Health status
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Terminally ill child may benefit from discussion about death
rather than specific diagnosis
Bereavement
• Children orphaned by HIV/AIDS
– North America: 300,000
– Worldwide: 15 million
• Anticipatory loss
– Witnessing progressive mental and physical
deterioration of a loved one
– Confusing and unexpected manifestations
– May withdraw from patient
Bereavement
• Survivor guilt
– Families may experience multiple losses
– May not have time to process death before
another occurs
– Parent guilt over transmission
– Child guilt over survival
Bereavement
• Disruption of the family structure
– “Children suffer more from the loss of parental
support than from the death experience itself”
(Wolfelt, 1983)
– Disruption of parent/child attachment
– Issue of child guardianship
Other relatives?
Orphanages?
Foster care?
Other?
Clinical Psychology & the Pediatric
HIV Clinic
• Our role in the Pediatric HIV clinic...
– Provide brief intervention and assessment of
children and families seen in the clinic
– Provide referrals as needed
– Serve as a liaison between pt and medical team
– Screen for patients in need of psychological
treatment/intervention & provide services
Clinical Psychology & the Pediatric
HIV Clinic
Issues seen/addressed in the clinic:
• Poor adherence
• Domestic Violence
• Bereavement
• Substance abuse
• Disclosure
• Coping with illness
• Safe sexual practices
• Family Conflict
• PTSD
• Transitioning to the US
• Sexual assault
• Depression/Anxiety
• Behavior management
• Suicidal ideation/attempts
Case Presentations
Case #1: Dating & Romance
• 13 year old African-American male
• Interested in becoming sexually active
• No understanding of threat or need for
precautions
• All sexual knowledge acquired from soap
operas or late night cable TV shows
• Legal guardian refuses to discuss sex with
pt
Case #2: Bereavement
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15 year old African American female
Experienced loss of mother 1 year ago
Relocated to live with aunt
Experiencing high levels of guilt
Hiding mysterious scars on forearms
Case #3: Accidental Disclosure
• 15 y.o. Hispanic female
• Acquired HIV through blood transfusion in
infancy
• Boyfriend’s mother found out.
• Called police and disclosed to them.
• Called school officials.
• Resulted in significant distress/angst
Summary
• Severe worldwide impact on children
• Currently, there is no cure
• Highly stigmatized and feared, often
misunderstood, chronic illness
• Affects a large proportion of ethnic
minorities and low SES populations
Summary
• In addition to coping with a life-threatening illness
and a complicated medical regimen:
Death & Bereavement
Medication Resistance
Stigma/Bias
Illness Disclosure
Safe sex
Unstable life/family
Being a kid/teen!!!
Questions? Comments?
Thank you!