The Attitudes Toward and Beliefs About HIV Disclosure Among Perinatally-Infected HIV-Positive Youth and their Caregivers

Abstract

RATIONALE: HIV is more common than primary immunodeficiencies, without cure to date and is preventable. Perinatally-infected HIV-positive youth have survived unexpectedly into adulthood, have had unique HIV disclosure experiences and now face these issues in adulthood. Despite effective HIV therapies, no HIV prevention exists that has diminished HIV infections rates. At least 25% of the HIV-infected are unaware of their diagnosis. Hypothesis: attitudes and beliefs of HIV disclosure determine the likelihood of HIV disclosure behaviors. METHODS: Population: Perinatally-infected HIV-positive/disclosed youth (aged 13-24 years) of Allergy/Immunology at Texas Children's Hospital and caregivers; Instrument: needs assessment theory-driven surveys. RESULTS: Of the eligible population, 26 participants (15 youth; 11 caregivers) completed The Care to Share HIV Disclosure surveys that were framed in the Theory of Reasoned Action/Theory of Planned Behavior (21-item, quantitative) and in the Transactional Model of Stress/Coping (1-item qualitative) to define the attitudes and beliefs (A/B) of HIV disclosure. A/B were classified as promoters (P) or inhibitors (I) of HIV disclosure. A/B - P (youth and caregivers)-HIV-knowledge; close family; caring people; when helping others; pre-puberty; (youth)-partner disclosure. A/B - I (youth and caregivers)-keeping HIV a secret; (youth)-close friends (caregivers)-partner notification; others’ opinions. (r=0.63). CONCLUSIONS: HIV stigma was identified by youths’ belief in and caregivers’ ambivalence to keeping HIV a secret from everyone. Yet youth and caregivers demonstrated perceived power for HIV disclosure when helping others and in settings of HIV-knowledge seeking and teaching. The revealed A/B serve as formative steps to unfolding effective HIV prevention planning and raise implications for immunologists in screening for HIV.