title: Adolescent HIV disclosure in Zambia: barriers, facilitators and outcomes.
abstract: BACKGROUND
  As adolescents living with HIV gain autonomy over their self-care and begin to engage in sexual relationships, their experiences of being informed about their HIV status and of telling others about their HIV status may affect their ability to cope with having the disease.
  
  
  METHODS
  In 2010, we conducted a qualitative study among adolescents aged 10-19 living with HIV in Zambia, and with their parents and health care providers. Through interviews and focus group discussions, we explored the disclosure of HIV status to adolescents living with HIV; adolescents' disclosure of their status to others; and the impact of both forms of disclosure on adolescents.
  
  
  RESULTS
  Our study identified three main barriers to disclosure of HIV status: local norms that deter parents from communicating with their children about sexuality; fear of HIV stigma; and an underlying presumption that adolescents would not understand the consequences of a HIV diagnosis on their lives and relationships. With regard to adolescents' disclosure of their HIV status to their sexual partners, our study identified fear of rejection as a common barrier. In rare cases, open family conversations about HIV helped adolescents come to terms with a HIV diagnosis. Findings indicated that disclosure had various outcomes at the individual and interpersonal levels. At the individual level, some adolescents described being anxious, depressed and blaming themselves after being told they had HIV. At the interpersonal level, disclosure created opportunities for adolescents to access adherence support and other forms of psychosocial support from family members and peers. At the same time, it occasionally strained adolescents' sexual relationships, although it did not always lead to rejection.
  
  
  CONCLUSIONS
  There is a need for public health interventions that guide adolescents living with HIV, their parents and families through the disclosure process. Such interventions should help parents to assess and understand the evolving cognitive capacity and maturity of their adolescents in order to determine the appropriate time to inform them of their HIV-positive status. Such interventions should also mitigate the risk of HIV stigma, as well as local norms that may prevent discussions of sexuality within families. Adolescents who have been informed of their HIV status should be provided with on-going support to prevent disclosure from negatively affecting their psychological and sexual wellbeing. Further research is needed to explore the potential role of trusted family members in contributing to the disclosure process.
authors.affiliation: International HIV/AIDS Alliance, Hove, UK; Division of Health Research, Lancaster University, UK; gmburu@aidsalliance.org.
authors.forename: Gitau
authors.initials: G
authors.lastname: Mburu
authors.affiliation: Center for Global Health, Trinity College, Dublin, Ireland, UK.
authors.forename: Ian
authors.initials: I
authors.lastname: Hodgson
authors.affiliation: Population Council, Washington, DC, USA.
authors.forename: Sam
authors.initials: S
authors.lastname: Kalibala
authors.affiliation: Alliance Zambia, Lusaka, Zambia.
authors.forename: Choolwe
authors.initials: C
authors.lastname: Haamujompa
authors.affiliation: Research Department, Dignitas International, Zomba, Malawi.
authors.forename: Fabian
authors.initials: F
authors.lastname: Cataldo
authors.affiliation: Departments of Pediatrics and Epidemiology, Perelman School of Medicine, University of Pennsylvania, PA, USA; Children's Hospital of Philadelphia, PA, USA.
authors.forename: Elizabeth D
authors.initials: ED
authors.lastname: Lowenthal
authors.affiliation: Department of Infectious Disease Epidemiology, London School of Hygiene and Tropical Medicine, London, UK.
authors.forename: David
authors.initials: D
authors.lastname: Ross
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D002648:Child; D005260:Female; D017144:Focus Groups; D015658:HIV Infections / Q000523:psychology*; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010287:Parent-Child Relations; D036301:Qualitative Research; D012650:Self Disclosure; D055815:Young Adult; D015024:Zambia / Q000453:epidemiology
keywords: Africa; HIV; Zambia; adolescents; disclosure; sexuality