The Disclosure Model versus a Developmental Illness Experience Model for Children and Adolescents Living with HIV/AIDS in São Paulo, Brazil

Abstract

Whether, how, and when children's HIV/AIDS diagnosis needs to be disclosed to them has received growing attention. This paper describes and conceptualizes how communication about HIV/AIDS influences disease knowledge and psychosocial development in a group of children and adolescents living with perinatally acquired HIV infection in an AIDS institution in São Paulo, Brazil. Data consist of the lived experience of 36 children ages 1 to 15 and was gathered through ethnographic research methodologies: participant observation and semistructured informal interviews. Results show that AIDS diagnosis is not disclosed to children, who experience a growing confusion about the interconnected meanings of sickness, medications, living at a house/institution, and having AIDS. Children younger than 6 learn to accept medication taking and to silence illness-related questions. Seven to 9-year olds perceive that the word AIDS and/or being sick are considered negative attributes, but are confused about how these relate to their lives. Preadolescents' growing awareness of the relationship between their lives and negative social values associated with AIDS produces shame and anger. Adolescents exhibit a poor understanding of the implications of HIV/AIDS for their lives and cynicism toward AIDS care, their future, and information about risks to their health. In conclusion, lack of communication about HIV/AIDS creates a context of confusion and mistrust, is detrimental to psychosocial development and coping, compromises disease knowledge, and increases vulnerability to risk behavior. Providing developmentally appropriate information about HIV/AIDS that matches children's illness experiences at all ages would eliminate the need for disclosure and reduce children's emotional distress.

Telling Children They Have HIV: Lessons Learned from Findings of a Qualitative Study in Sub-Saharan Africa

“…8 Here, similar to other studies, 12,32 children had a sense of social isolation and emotional distress, noted in messages to not touch other people's belongings and not share common household items, and unexpressed questions and concerns resulting perhaps from messages that worrying will make them sicker, but also possibly reflecting cultural norms around parent-child communication.…”

“…A Brazilian study found that prolonged silence, poor adult-child communications, and self-discovery resulted in psychosocial distress, self-stigma and adherence problems among HIVpositive youth. 12 In other studies in clinical settings, health care providers play a large role in initiating disclosure with children, sometimes telling parents that it is time that the child should be told. 34,37 In this study's setting, providers were concerned with finding the best way to disclose to children, and were therefore not intervening with what they saw as the ''natural'' disclosure process currently taking place until more information was made available.…”

“…[7][8][9][10] A second perspective is from the child receiving the information. [11][12][13][14][15][16][17] Prevalence of disclosure to infected children varies. A recent review of pediatric disclosure literature from the United States, Canada, and Europe reported that 10-75% of HIVinfected children had been informed of their HIV status.…”

Patterns of HIV Diagnosis Disclosure to Infected Children and Family Members: Data from a Paediatric Antiretroviral Program in South Africa

“…Although caregivers often delay disclosure till later age and adolescent, there is no evidence to suggest that disclosure negatively affects HIV-positive children. On the contrary, children who know their HIV diagnosis appear more likely to accept medical care and have higher self-esteem than those who are unaware of their diagnosis [10,14,28,29]. However, the few negative outcomes of disclosure documented, include the family's experience of stigma when children share their diagnosis with others, or an emotional burden for children when they are asked to keep HIV diagnosis a secret [28].…”

Pediatric HIV Disclosure: A Process-Oriented Framework

“…Disclosure as a process is supported in the literature, with studies describing disclosure models that stress an ongoing process and emphasize the caregiver's participation (AAP, 1999;Abadia-Barrero & LaRusso, 2006;Lesch et al, 2007). However, these models lack detailed descriptions of health information segmented to mirror cognitive development (Abadia-Barrero & LaRusso, 2006;Lesch et al, 2007). To promote an ongoing process-oriented disclosure for children with vertically transmitted HIV, we developed a framework structured according to Piaget's cognitive development theory that considers the developmental progression of illness understanding and allows reintegration of concepts.…”