The disclosure model versus a developmental illness experience model for children and adolescents living with HIV/AIDS in Sao Paulo, Brazil

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 Sao 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.