In 2016, approximately 2.1 million children worldwide were living with HIV.1 According to World Health Organization guidelines, school-age children should be informed of their seropositive status, and disclosure for younger children should occur incrementally, based on their emotional and cognitive maturity, to prepare them for full disclosure when appropriate.2
Studies have demonstrated numerous benefits of seropositive status disclosure, including increased treatment adherence and a positive effect on disease progression, viral load, and mortality.3 Although some children have reported emotional reactions such as feelings of sadness in the period immediately after learning of their status, some evidence indicates that the overall effects of disclosure are positive.4
However, findings show that many HIV-positive children have not been told of their status because of barriers such as concerns about stigma, fear of harming the child, and lack of resources to guide clinicians and caregivers in the disclosure process.5 “While many resources for disclosure have been developed, most countries have not formally adopted national policies or guidelines to implement child and adolescent-friendly disclosure models in health facilities and communities,” wrote the authors of a paper recently published in AIDS Care.3
In a review of the relevant literature, they identified studies describing 7 disclosure models that are currently available and in use in various settings.3 The components of each model are briefly summarized here.
- 2015: healthcare worker training, predisclosure education sessions for both youth and caregivers, a supported disclosure session, and one-on-one post-disclosure support6
- 2015: use of a specialist to deliver an intervention appropriate to the sociocultural context and developmental needs of the child7
- 2014: evaluation of child and caregiver readiness, identification of cues to prompt disclosure discussions, caregiver education and support, and gradual disclosure to child8
- 2015: gradual, structured framework for disclosure using a “disclosure book” that delays mention of HIV-specific terminology, focuses on staying healthy and having a future “like other kids,” and includes discussion cues9
- 2015: cartoon book to guide gradual disclosure, readiness assessments for child and caregiver, progress tracking forms, and healthcare worker training10
- 2004: disclosure training, individual sessions, disclosure session, and support groups4
- 2013: screening, child readiness assessment, disclosure, and follow-up11
In addition, the authors identified a range of available resources to help facilitate the serostatus disclosure process and help children understand their diagnosis, including children’s books, job aides for healthcare providers, and educational videos.
They recommended that, when considering which tools to use, those selected should be “accurate, non-stigmatizing resources that: (a) reinforce positive messaging and are free of analogies describing HIV as evil, violent, or frightening; (b) educate children accurately about the virus, and in an age appropriate manner; (c) reaffirm children’s strengths and commonalities with their peers; and (d) have relevance to their particular sociocultural context.”3
To learn more about the challenges associated with disclosure and how clinicians can support families throughout the process, Infectious Disease Advisor spoke with Elizabeth D. Lowenthal, MD, MSCE, assistant professor of pediatrics and epidemiology at the University of Pennsylvania Perelman School of Medicine, Philadelphia, and research director of the Global Health Research Affinity Group at Children’s Hospital of Philadelphia.
Infectious Disease Advisor: What are some of the challenges faced by those responsible for telling a child he or she has HIV?
Dr Lowenthal: The individuals who tell the child about his or her HIV status, whether they are family or health providers, need to explain things in a way that is developmentally appropriate. They need to provide true and correct information in a way that helps the child understand the importance of taking their medicines and helps them develop a positive self-image.
Challenges to this include:
- Changing ability to understand complex topics over time
- Common developmental delays in children living with HIV, with chronologic age being greater than developmental age
- The need to instill the importance of maintaining their confidentiality: not everyone understands about HIV as well as the child will if the child is getting ongoing education at medical visits and appropriate support at home. People who don’t understand that HIV is a treatable infection that can be acquired at birth, and that when treated effectively is no risk to others, might stigmatize the child if the others know the child has HIV
- The need to provide the child with tools to overcome the stigma they may face later in life
- Lack of disclosure within the family and/or stigma within the family
- Difficulty of building hope in children whose prognosis is good but who have lost loved ones to HIV
Infectious Disease Advisor: What is known about the effects of telling a child his or her HIV seropositive status?
Dr Lowenthal: The effects of telling the child can be quite varied and depend to a large extend on how “well” the disclosure is done and what the child’s experience with HIV has been.
When children are given true and positive information about their health and healthcare needs over time, it can be a seamless transition to introduce the name of their virus when developmentally appropriate. Sometimes, children and adolescents report that they had an easier time taking their medicines once they understood why they needed to take them.
In contrast, disclosure can be traumatic. This is particularly true when the child has internalized negative messages about HIV before learning that he or she is living with the virus. Traumatic disclosures can lead to blame. For example, blaming the parents for causing their infection, anger, anxiety, and depression. It can also be particularly difficult for children to deal with knowledge of their HIV status when they have lost parents or other loved ones to HIV.
Infectious Disease Advisor: How can clinicians support the patient and family throughout the disclosure process?
Dr Lowenthal: It is important for clinicians to play a role in providing age-appropriate information over time. At the same time, they must gain an understanding of how the family communicates, or does not communicate, about HIV.
The clinician needs to make sure that the adults in the household who support the child have accurate understanding as well as an age-appropriate vocabulary to communicate with the child. They also have to help the parents or guardians to deal with their own struggles related to disclosure so that they can provide the loving support the children need around this issue.
The clinician should help the parent or guardian think through the best timing for using the term “HIV” with the child. This is usually the youngest age at which the child can understand the need to not talk with others about their HIV status until confirming with the parent or guardian about whether it is “safe” to have that discussion.
There are a number of excellent tools available that can help clinicians and families communicate with younger children about their healthcare needs. There are comic books that present HIV as a “bad guy” and CD4 cells as superheroes or soldiers, which many clinicians use to help illustrate key points. Some clinicians use checklists or other clinic documentation to track what the child has been told and what words are being used.
- UNAIDS. Fact sheet – Latest statistics on the status of the AIDS epidemic. http://www.unaids.org/en/resources/fact-sheet. Accessed June 15, 2018.
- World Health Organization. Guideline on HIV disclosure counselling for children up to 12 years of age. http://apps.who.int/iris/bitstream/handle/10665/44777/9789241502863_eng.pdf. Accessed June 15, 2018
- Wright S, Amzel A, Ikoro N, et al. Talking to children about their HIV status: a review of available resources, tools, and models for improving and promoting pediatric disclosure. AIDS Care. 2017;29(8):1019-1025.
- Blasini I, Chantry C, Cruz C, et al. Disclosure model for pediatric patients living with HIV in Puerto Rico: Design, implementation, and evaluation. J Dev Behav Pediatr. 2004;25(3):181-189.
- Vreeman RC, Gramelspacher A, Gisore PO, Scanlon ML, Nyandiko WM. Disclosure of HIV status to children in resource-limited settings: A systematic review. J Int AIDS Soc. 2013;16(1):18466.
- Beck-Sague CM, Devieux J, Pinzon-Iregui MC, et al. Disclosure of their HIV status to perinatally infected youth using the adapted Blasini disclosure model in Haiti and the Dominican Republic: Preliminary results. AIDS. 2015;29:S91-S98.
- Reynolds NR, Ofori-Atta A, Lartey M, et al. SANKOFA: A multisite collaboration on paediatric HIV disclosure in Ghana. AIDS. 2015;29(Suppl 1):S35-S45.
- Beima-Sofie K, John-Stewart G, Shah B, Wamalwa D, Maleche-Obimbo E, Kelley M. Using health provider insights to inform pediatric HIV disclosure: A qualitative study and practice framework from Kenya. AIDS Patient Care STDs. 2014;28(10):555-564.
- Brandt L, Beima-Sofie K, Hamunime N, et al. Growing-up just like everyone else: Key components of a successful pediatric HIV disclosure intervention in Namibia. AIDS. 2015;29(Suppl 1):S81-S89.
- O’Malley G, Beima-Sofie K, Feris L, et al; MOHSS Study Group. “If I Take My Medicine, I Will Be Strong:” Evaluation of a pediatric HIV disclosure intervention in Namibia. J Acquir Immune Defic Syndr. 2015;68(1):e1-e7.
- Boon-yasidhi V, Chokephaibulkit K, McConnell MS, et al. Development of a diagnosis disclosure model for perinatally HIV-infected children in Thailand. AIDS Care. 2013;25(6):756-762.