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Dr. Judith Kose
Technical Advisor
Elizabeth Glaser Pediatric AIDS Foundation
HIV Adolescence Workshop, Nairobi, Kenya, 2-4 October, 2019
Disclosing HIV Status: Mission Possible
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Disclosing HIV Status
For perinatally acquired HIV, WHO guidelines recommend
that children of school-going age (6-12 years) be told they
are HIV-positive
Disclosure prevalence in resource limited settings ranges
0-69%
Factors influencing disclosure:
- Child’s age
- Perceived ability to understand HIV infection
- Caregiver education level
- Caregiver openness about their own HIV status
Common barriers:
- Fear that the child would disclose HIV status to
others
- Fear of stigma
- Concerns for children’s emotional or physical health
Adolescent HIV disclosure is more
complex, involves multiple parties
and has limited guidance
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Disclosing HIV Status
• Disclosure needs to be planned ahead! If
accidental disclosure happens, post-disclosure
management is more essential than ever!
• No one time event, the process of
disclosure can take months and years!
• Models of disclosure are diverse:
- Independent disclosure
- Empowered disclosure by caregivers or
adolescents
- Joint disclosure with healthcare worker
- Assisted disclosure with caregiver/
healthcare worker/counsellor/peer support
CountryAge of Partial
Disclosure
Age of Full
Disclosure
Cameroon 7-11 years 12-13 years
Lesotho5-9 years 10 years
Malawi 5-7 years 11-13 years
Rwanda 8-10 years 11-14 years
Tanzania4-6 years 8-10 years
Uganda None 12 years
Zambia 5-7 years 7+ years
Kenya 6-10 years 10- 12 years
Ages of Disclosure of HIV Status
in Selected African Countries.
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Disclosure Toolkit Components
• Evidence-informed with references to
global sources
• Guidance and checklists for disclosure by:
- Healthcare workers
- Caregivers
- Horizontally-infected adolescents
- Disclosure to social networks, community
and partners by adolescents
• Job aids:
- Algorithms
- Readiness assessment checklists
- Role playing scenarios (3) for each module
- Testimonies by adolescents, caregivers and
healthcare workers
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Structure of Modules
Each module includes:
• Benefits and barriers
• Readiness assessment
• Disclosure tips and key talking points
• Post-disclosure evaluation and follow up
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Kenya Example
Eliud Kipchoge of Kenya
Gold medal in the men's Marathon race
Rio 2016 Olympic Games Athletics
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“When I had to disclose to my boyfriend
because I had to tell him from my
mouth, not him hearing me speak on
different media channels. I only did this
through a message (felt face to face
was hard) then called him later to
confirm what I had written down. It is
then that I discovered that disclosure
is hard, it’s been easy for me on TV
and other platforms to talk about my
status, but it was hard for me to face
my boyfriend and confirm what I
always say on media platforms.”
An open youth advocate disclosing
to a boyfriend
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Disclosure Tool available in English, French and Portugues at:
https://www.pedaids.org/resource/disclosure-of-hiv-status-toolkit-for-pediatric-
and-adolescent-populations/