1. Talking to Children about their HIV status: Tools and Models for Promoting Disclosure
Steffanie Wright, Henry Miller, Nnenna Ikoro, B. Ryan Phelps,Anouk Amzel
Office of HIV/AIDS, USAID, Washington D.C.
Background of the Problem: Pediatric disclosure, as defined by a child learn-
ing his or her HIV status is an ongoing, poorly addressed challenge in pediatric settings
worldwide. Globally more than 3.2 million children1
are infected with HIV, while general-
ly few know of their HIV status.2
Reasons for this gap include fear of stigma3
, concern
over harming child, and a lack of available disclosure models to guide clinicians and care-
givers.
The WHO strongly recommends that a seropositive child be disclosed his or her
status by the time he or she is of school-age (6-12yrs).4
Documented benefits of disclo-
sure include increased adherence to ART5
, and decreased frustration with medication
regimens.6
The purpose of this study was to evaluate existing literature to identify disclo-
sure models and materials, which could be adopted by program implementers, caregivers
and clinicians as aids in the disclosure process.
Methods: Existing grey literature as well as published journal articles were reviewed
separately. Search terms for grey literature included: “HIV,” “children,” “books,”
“development,” “global,” “international,” and “Africa.”
Medline and PsychInfo databases were also reviewed. Search terms for these
databases included: HIV disclosure (children or pediatric or adolescen*) (caregiver or
parent or guardian or provider*). 461 article citations and references from the databases
were reviewed, and articles that discussed pediatric disclosure, models, barriers, adher-
ence, retention or biological and psychosocial outcomes were included.
Results: Overall 15 books, curriculum/tools and publications were identified in the
grey literature. 104 journal articles were identified from the databases, and the 35 most
relevant articles were selected for final inclusion.
Conclusions: This review identified a variety of tools and materials available in the litera-
ture that could serve as helpful guides in the disclosure process. Disclosing to a child his or
her HIV status provides an opportunity to improve adherence to therapies, as well as improve
the child’s health and wellbeing. Available disclosure models and tools can be used as aids in
order to effectively and sensitively address barriers to disclosure. In the future, more research
on the benefits of disclosure, as well as the continued development of culturally-sensitive
tools that both caregivers and clinicians can use are needed.
References:
1. WHO. Treatment of Children living with HIV. Retrieved from http://www.who.int/hiv/topics/paediatric/hiv-paediatric-infopage/en/
2. Vreeman, R. et al. (2013). Disclosure of HIV status to children in resource-limited settings: a systematic review. J of Intnl. AIDS Soc.
3. Hejoaka, F. (2009). Care and secrecy: Being a mother of children living with HIV in Burkina Faso Soc. Sci. & Med. 69(6):869-76
4. Guideline on HIV disclosure counselling for children up to 12 years of age. (2011). Geneva, Switzerland: World Health Organization.
5. Cluver et al. (2015) “HIV is like tsotsi. ARVs are your guns”: association between HIV-disclosure and adherence to antiretroviral treatment among
adolescents in South Africa. AIDS Suppl 1:S57-65.
6. Fetzer BC et al. (2011) Barriers to and facilitators of adherence to pediatric antiretroviral therapy in a sub-Saharan setting: insights from a qualitative
study. AIDS Patient Care STDS, 25(10):61121.