“I knew I had something bad because no-one spoke about it” – disclosure discovery: Experiences of young people with perinatally acquired HIV in the UK

Children and Young People Living with HIV/AIDS

“…Many studies have also revealed that stigma associated with HIV/AIDS is a "destructive infl uence" on the well-being and quality of life of HIV-positive young people (Fair et al 2011 ;Dorrell and Katz 2013 ;Mellins and Malee 2013 ;Rydström et al 2013 ). 6 ), Asha Persson, Christie Newman and Angela Miller write that "the social stigma related to having HIV is a fundamental aspect of their disease that sets these young people apart from their peers and profoundly shapes their life experience and sense of self".…”

“…Closely related to stigma and discrimination is the notion of secrecy and disclosure (Fielden et al 2006 ;Abramowitz et al 2009 ;Vijayan et al 2009 ;Dorrell and Katz 2013 ;Rydström et al 2013 ;see Chaps. 5 , 6 , 7 , 17 , 18 , 19 , 20 , 21 , and 22 ).…”

“…Secrecy (non-disclosure) is a means that individuals who experience stigma use to hide their "discredited identity" (Goffman 1974 ). The choice of disclosure or non-disclosure is a refl ection of how each HIV-positive person experiences and deals with HIV/AIDS in their everyday life (Bailey and Darak 2013 ;Dorrell and Katz 2013 ;Greeff 2013 ;Sauceda et al 2013 ;Chew et al 2014 ;. HIV disclosure or nondisclosure is a complex phenomenon.…”

Life Experiences of Youth Who Were Born with HIV Infection in Puerto Rico: The Voices of Young Survivors

“…Two study participants believed they had cancer like their mothers, and concluded they were going to die of cancer as their mothers did. A similar situation emerged in a study conducted in the United Kingdom by Dorrell and Katz (2013) among a sample of pHIV-I. Caregivers did not know that they had caused study participants unnecessary stress and anxiety.…”

“…Perinatally HIV-infected youth in the United Kingdom reported similar experiences of feeling "stupid" and "betrayed" by their caregivers (Dorrell & Katz, 2013). Because of the secrecy around them and their health status, some study participants in Puerto Rico used clues, information, and their lived experiences to reach a conclusion about their health.…”