Optimizing Disclosure of HIV Status to a Diverse Population of HIV-Positive Youth at an Urban Pediatric HIV Clinic

Disclosure of HIV Status to Youth With Perinatally-Acquired HIV: The Dilemma, Risks, and Responsibilities

“…In this issue, Dantuluri et al [10] present data from a quality improvement project in a single-site pediatric HIV clinic in the geographic Southeast U.S. designed to increase the rate of disclosure to children >11 years of age with PHIV who have not yet learned their PHIV status (i.e., have not been "disclosed"). Once initiated, the study illuminated the need to also monitor documentation of nondisclosure status in the medical record.…”

“…Despite these noteworthy benefits, disclosure of PHIV status to children and youth is complicated and often delayed due to many factors. Dantuluri et al [10] noted that the World Health Organization recommends disclosure while children with PHIV are still school age [11,12]. In the U.S., a mother's HIV diagnosis is protected by confidentiality laws [11] (i.e., HIPAA, and in some states, Superconfidentiality laws).…”

“…Unfortunately, delayed or avoided disclosure can result in abrupt or inadvertent disclosure, which also can have detrimental, potentially traumatic sequelae. Thus, Dantuluri et al [10] endorse documentation of nondisclosure status in the medical record to reduce the risk of inadvertent disclosure by less experienced or non-HIV providers [4,5] who may be naively unaware of the consequences of such disclosure. The author [10] appropriately acknowledges the implications and responsibilities associated with disclosure of PHIV, including being sensitive to and aware of the stigma; the family needs to maintain confidentiality and to educate the child/youth about disclosure to others and support the youth's adjustment to learning their HIV diagnosis.…”

“…Thus, Dantuluri et al [10] endorse documentation of nondisclosure status in the medical record to reduce the risk of inadvertent disclosure by less experienced or non-HIV providers [4,5] who may be naively unaware of the consequences of such disclosure. The author [10] appropriately acknowledges the implications and responsibilities associated with disclosure of PHIV, including being sensitive to and aware of the stigma; the family needs to maintain confidentiality and to educate the child/youth about disclosure to others and support the youth's adjustment to learning their HIV diagnosis. It is also critically important to manage how the child learns about maternal HIV status, which historically presents as the primary barrier to disclosing PHIV to the child.…”

“…Even mothers with HIV who agree that their child should know their HIV status often still do not disclose out of fear of what may happen following disclosure to their child (i.e., who the child may tell without fully understanding the social ramifications) [11,13]. Dantuluri et al [10] suggest abrupt disclosures in adolescence can be avoided by disclosing PHIV at a younger age, instilling health promotion and self-care practices prior to adolescence. Nevertheless, the individual child's developmental level and social/emotional maturity always need to be taken into consideration regardless of physical development.…”