Welcome to the I-TECH HIV/AIDS
Clinical Seminar Series
March 11, 2010
HIV Disclosure in Children
Dr. Laura J. Brandt
I-TECH Namibia
1
Objectives
Explore the . . . .
• Why?
• When?
• Who?
• How?
. . . .of HIV disclosure to children
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Tangeni*
• 16 year old girl, rural northern Namibia, on
HAART for 5 years
– Over the past year, started being 2-3 days late for
appointments
– Pill counts intermittently poor
– Coming to clinic on her own
• History:
– Diagnosed with HIV when 10 years old after parents
died
– Living with grandmother since then
*Tangeni is not her real name
3
Tangeni (2)
• In response to why missing pills,
– “I don’t see why I should drink the tablets because I
feel well. At the beginning my grandmother said I had
asthma so I needed to drink my tablets every day.
But now I’m not coughing anymore”
4
Why worry now?
• 2007 UNAIDS estimates:
– 2 million <15 years old with HIV
– 90% in sub-Saharan Africa
• HAART now more accessible in Africa;
more children likely to survive to adulthood
• “Backlog” of children who need to know
their status
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Terminology
• Full disclosure
• Partial disclosure
– Part of the disclosure process
– The truth but not the whole truth
• Complete non-disclosure – maintain secrecy!
• Deception
– Illness ascribed to another disease
– “Child’s fault”, e.g. for not eating enough
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Rate of pediatric HIV disclosure
• Variable
– 14% of 50 children1, mean age 9 years (India)
– 26% of >6 years old2 (South Africa)
– 64% of 36 children 6-16 years3 (USA)
– 30% of 103 children ≥6 years (Thailand)
• Of those, average age 9.3 years
1S
Arun, Indian J of Pediatrics 2009,76:805-808
2K Moodley et al, SAMJ.2006,96(3):201-204
3P J Bachanas, et al, J Pediatric Psychol 2001,26(6)343-352
4P Oberdorfer et al, J Paed and Child Health 2006,42:283-288
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Why disclose to children?
• Evidence from disclosure studies in childhood
cancer
– 1970s: shift from protective mode to disclosure of
diagnosis
– Controlled studies of pediatric cancer patients –
those who had not been told their dx more anxious
and distressed
– 116 long-term survivors of childhood cancer* showed
good psychological adjustment associated with early
knowledge of dx
• But HIV is not cancer . . . . . . .
*L A Slavin et al, 1982, Am J Psychiatry 139(2):179-183
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Benefits of HIV disclosure
What are the benefits for the child?
What are the benefits for the caregivers?
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Benefits of HIV disclosure
For child:
–
–
–
–
–
Feels more in control
More open involvement in medical care decisions
Fewer disruptive behaviours
Improved adherence to medication
Access to health education, social support, peer
group support
For caregivers:
– Relief – no need to maintain secrecy
10
Better psychological adjustment
• 36 HIV-infected 6-16 y.o and caregivers
(USA)
– 64% disclosed to
• Main disclosure findings:
– Children who had been disclosed to had less
internalisation behaviour problems
– Caregivers of those disclosed to have less
psychological distress
P J. Bachanas, et al, J Pediatric Psychol 26(6) 2001:343-352
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Fewer emotional difficulties
• 127 HIV infected children 11-15 yo
(Zambia)
– 73% on HAART
– 38% disclosed to
• more likely to be older and on HAART
• 2.5 x less likely to score in abnormal range for
emotional difficulties
A Menon et al, J Acquir Immune Defic Syndr 46(3)2007:349-354
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Adherence evidence from Uganda
• 42 HIV-infected 5-17 y.o. children and primary caregivers
– Full disclosure related to good adherence
HIV disclosure status
Missed doses (of CTX or CTX+ART)
never
occasionally
frequently
Complete disclosure
8
4
0
Partial disclosure *
1
5
10
Non-disclosure
3
8
3
* Partial disclosure in this study defined as: not fully aware of
status but suspicious, asks questions, assumes drug is a cure,
have been lied to or heard information from others
W. Bikaako-Kajura, AIDS Behav (2006) 10:S85-S93
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and from Puerto Rico . . .
• 40 youths, mean age 13.8 yrs
• Prior to disclosure, 78% did not suspect dx
– Half of those who did suspect had “accidental disclosure”
• Staged disclosure model utilised
• 6 months after disclosure
– 58% self-reported better adherence (caregivers concurred)
– 25% of staff said patients as a group had better adherence
– 85% considered disclosure as a positive event
• Only those who had “accidental disclosure” considered
disclosure a negative event; wished they had been told by a
family or staff member
I Blasini et al, Devel and Behav Psychol 25(3)2004:181-189
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Benefits
• “. . . [disclosure] helped because even
when she gets tired of drugs then she
remembers that it is good to take the drug
and she takes it . . .” {caregiver of 14 year
old girl in Uganda study}
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Barriers to disclosure
What are some of the barriers to disclosure?
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Barriers to disclosure
• Caregivers:
– Parental feelings of guilt
• Uncomfortable disclosing own status*
– Desire to preserve innocence of childhood
– Fear of adverse consequences
• Psychologically damaging; poor self-esteem; will affect “will
to live”
• Child will reject parent
• Child will not be able to keep the family secret
• Need to protect child and family from stigma, rejection,
ostracism, threats
• Caregivers and health staff uncomfortable
*L. Weiner 1996 Ped AIDS & HIV Inf: Fetus to adolesc 7(5)310-324
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Dangers of non-disclosure
• Child’s imagination creates unnecessary
worry; may blame him/herself
– “What did I do to God? Why is it that I have to continue
taking drugs every day?” {9 yo girl, Uganda}
• Parents may use forceful means to ensure
children take medication.
– “Mummy buys me chocolate when I take my drugs, she
takes me to the supermarket. Mummy beats me when I
refuse medicine. . .it is sour.” {5 yo boy on ART, Uganda}
• Child may find out in uncontrolled / traumatic
situations
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When should disclosure take place?
A. 6-7 years old
B. 8-10 years old
C. 11-14 years old
D. No specific age
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When should disclosure take place?
(2)
• No specific age is THE “right” one
– Can usually begin partial disclosure with
young children, 5-6 years old
• Simple language that they understand
• Day-to-day aspects of life
– School-aged children
• Give moderate amount of specific information
– Adolescents
• Discuss all aspects
*A M Butler et al, Pediatrics 2009;123:935-943
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When should disclosure take place?
(3)
• Median age of full disclosure = 11 years in
365 HIV-infected children*
– Age of disclosure declining with time
• 1985 ~ 16 years, 1998 ~ 5 years
*A M Butler et al, Pediatrics 2009;123:935-943
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Who should disclose to the child?
A. Caregiver
B. Social worker or counselor
C. Nurse
D. Doctor
E. Any of the above
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Who should disclose to the child?
• E. Can be any of the above but ideally
should be a team effort always including
the caregiver
• 3 partners for “ideal” disclosure
– Child
– Caregiver(s)
– Health care workers
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Role of health care worker
• Botswana study*
– Children >6 y.o. more than 4 x as likely to know their
HIV status if a doctor or nurse had spoken with
caregiver about disclosure
– Caregivers who had not discussed disclosure with
doctor or nurse often cited not knowing “how to tell
the child” as a key reason for not beginning the
disclosure process
*Botswana-Baylor Childrens Clinical Center of Excellence, pers. com.
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How?
Disclosure is a process, not a one time event
• Build up a “trust bank” with the child from start –
tell the truth
– Caregivers
– Health care workers – establish rapport
• Discuss disclosure with caregiver
–
–
–
–
–
What has child been told?
Benefits of disclosure
What barriers do they see?
Offer support, agree on a plan
Prepare caregiver for handling questions from child
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Caregiver ready – what now?
General tips
–
–
–
–
Use simple (age-appropriate) language
Tell the truth
Be positive
Test understanding at each visit
• “Last time we discussed why you are taking your
medicines, do you remember what we discussed?”
– Congratulate child for what he/she has learned
at every visit
– End visit with a positive comment and a smile
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Stage 1 for children from ~6 yrs old
• You are taking medicines to keep you healthy
• You have body soldiers that keep you healthy
• Your medicines increase the number of body soldiers
and keep them strong so you can stay healthy
• What would you like to be when you grow up? As long
as your body soldiers are strong and you have many,
you can do what you want to do in life.
• You need to drink your medicines in the morning and
evening, when your [auntie, mother . . .] gives them to
you
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Stage 2
• Once stage 1 understood, or if older child, move
on to next stage
– Your body soldiers became weak because something
was attacking them (“a bad guy”, “a germ”)
– If you take your medicines every day you keep the
“bad guy” asleep so it can’t attack your body soldiers
– Body soldiers can then increase in number and stay
strong to keep you healthy
– If you don’t take your medicines the bad guy could
wake up and start attacking your soldiers
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Stage 2 (2)
• May consider asking the child if he/she would
like to know how many body soldiers they have
– Check the file carefully first
• If CD4 trend is up, show child that their own “body
soldier” numbers are going up because they have
taken their medicines
• If CD4 trend not up, re-enforce previous messages
(while looking into possible causes)
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Stage 2 (3)
• Build on the story, introducing the concept
of resistance
– If you forget your medicine and the “bad guy”
wakes up too often, he can become “tricky” ;
then your medicines may not work to keep
him asleep
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Stage 3
• Introducing the words HIV and CD4
– Only proceed if caregiver is ready
– Anticipate how the child might react
• In presence of caregiver,
– As usual, ask child why taking medicines;
congratulate for what he/she has learned
– Ask child if he/she wants to know the other
names for the soldiers and the bad guy
• “bad guy” is a virus called HIV
• “body soldiers” are called CD4 cells
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Stage 3 (2)
– Ask child what he/she has heard about HIV
and correct any misconceptions
– Choose words that avoid assigning blame,
e.g. if child asks where he/she got HIV,
• “some children are born with the virus / HIV, and
we think that is what happened to you”
• NOT “your mother gave it to you”
– Put new information back in the context of
what the child has already learned
• “as long as you keep taking your medicines well,
keep the bad guy asleep and the soldiers strong,
you can do everything you want to do in life”
32
What if child is not yet on HAART?
Should you still disclose?
Yes?
No?
Why?
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What if child is not yet on HAART?
• Yes, child still needs to understand why he/she
attends clinic and take other medicines
• Explain that they:
– still have enough body soldiers to keep healthy,
– are taking their cotrimoxazole to help the body
soldiers keep healthy, and
– need blood tests every few months to check on the
number of body soldiers
– when their body soldiers are not enough, they will
start on some new medicines.
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Continuing Support beyond Stage 3
•
•
•
•
•
Continue to check understanding at each visit
Teach names of their medicines
Discuss how they can assist in their care
Talk about who they will tell /what they will say
Crucial to discuss with young adolescents
– Modes of HIV transmission
– Reproductive health; ask about sexual activity
• Include planning a family in future; ↓VL if on HAART
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Tools to assist in disclosure
• Difficult to find
• Group disclosure tools: Rwanda*
– Comic strip for adolescents
– Cartoons for younger children
– 700 children (with parents / caregivers) disclosed to in
groups, as disclosure seen as urgent and too many to
handle individually
– Strategy led to formation of support groups
*Dr. Alexandra Peltier, Disclosure for adolescents living with
HIV, 2009 HIV/AIDS Implementers’ meeting, session 50
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Tools to assist in disclosure (2)
• Disclosure book developed by BIPAI*
– Simple cartoon style drawings, standardised
approach
– With permission have “borrowed” the book in Namibia
• initiated disclosure process with >240 children in 3
months
• Recorded child’s understanding at each visit
• Book currently being “Namibianised”
*BIPAI: Baylor International Pediatric AIDS Initiative
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Child, caregiver, healthcare worker
Photo by Sara Wood
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Photo by Sara Wood39
Photo by Sara Wood
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Disclosure tool
• Initial observations
–
–
–
–
–
HCWs relieved to have a tool to guide them
Caregivers relieved to have help
Cartoon story easy to explain in all languages
Does not take too much time
Some children who “knew” their HIV status did not
understand what that meant
– Caregivers just as interested in story as children
• “I didn’t know the virus was still there, just asleep”
{mother of 9 year old}
– Many asked for copies to take home
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Tangeni (3)
• Having admitted that she sometimes intentionally did not
take her pills, Tangeni was asked to come back the next
day with grandmother
• Next day,
– Staff spoke with grandmother alone; said she had lost all
her 18 children to HIV and could not find words to tell
Tangeni, so told her it was asthma
– Grandmother agreed to disclosure and appeared relieved
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Tangeni (4)
• Doctor had previously had discussions about school, and
even HIV. Tangeni understood the “science” of HIV
• The nurse-counselor and doctor made a link between
this knowledge and her HIV status
• Initially she was angry.
– “So you mean I have been taking HIV tablets all this time and I
didn’t know?!”
• Later . . .
– “Everything makes sense now. My parents died of HIV and that
means I got the infection from my mother”
– Staff and grandmother re-affirmed continuing support
• Post-script:
– 3 mos later, Tangeni doing well, good adherence, seems happy
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Key points
• Disclosure is an emerging challenge which
we cannot ignore
• Multiple benefits of disclosure
• Disclosure is a process
• HCWs and caregivers a team
• A simple tool can assist
• Tell the truth, be positive
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Thank you!
http://www.escape-tours.com/images/namibia.jpg
Next session: March 25, 2010
Dr Christopher Behrens – HIV Game of Knowledge
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