The role of disclosure in relation to assent to participate in HIV-related research among HIV-infected youth: a formative study Public Deposited

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  • Dulyx, Jennyfer
    • Affiliation: Gillings School of Global Public Health, Department of Epidemiology
  • Omba, Serge
    • Other Affiliation: School of Public Health, University of Kinshasa, Kinshasa, Democratic Republic of Congo
  • Corneli, Amy L
    • Affiliation: Gillings School of Global Public Health, Department of Epidemiology
  • Vaz, Lara
    • Affiliation: Gillings School of Global Public Health, Department of Health Behavior
  • Rennie, Stuart
    • Affiliation: School of Dentistry, Department of Dental Ecology, School of Medicine, Department of Social Medicine
  • Behets, Frieda
    • Affiliation: Gillings School of Global Public Health, Department of Epidemiology
  • Abstract Background The objective of this study was to develop a culturally appropriate approach for obtaining assent from children aged eight to 17 years to participate in paediatric HIV-related operational research in Kinshasa, Democratic Republic of Congo (DRC). Included within this objective was to determine whether or not HIV disclosure should be included as part of the assent process prior to research participation, a component of research participation, or not incorporated in any aspect of the child's involvement in the research. Factors that influence parents' and caregivers' decisions to disclose HIV status to children in non-research contexts were also explored. Methods A qualitative formative study was conducted. Semi-structured interviews were conducted with 19 youth living with HIV, 36 parents and caregivers of youth living with HIV, and 17 health professionals who provide care and support to youth living with HIV and their families. Participants were purposefully selected from three HIV care, treatment and/or psychosocial support programmes in Kinshasa, DRC. Results Most youth interviewed believed minors participating in HIV-related research should be informed of their HIV-positive status. Parents and caregivers and health professionals had varied perspectives on if and when HIV status should be disclosed to minors during research participation. The age of the youth influenced parents and caregivers' responses, and disclosure to adolescents was more frequently supported than disclosure to children. Several parents and caregivers, as well as some health professionals, suggested that minors should never be told their HIV-positive status when participating in HIV-related research, regardless of their age. Within the context of treatment programmes, disclosure of HIV status to minors was supported by youth, parents and caregivers, and health professionals as a means to improve adherence to medication. Conclusion In settings where most minors are unaware of their HIV infection, researchers should consider excluding the term, "HIV", when explaining HIV-related research to minors, and omitting it from assent forms or informational sheets related to research participation. However, an individualized disclosure plan should be initiated with parents and caregivers at the time of enrolment in HIV-related research, particularly in research that involves treatment.
Date of publication
  • 19712468
  • doi:10.1186/1758-2652-12-17
Resource type
  • Article
Rights statement
  • In Copyright
Rights holder
  • Amy Corneli et al.; licensee BioMed Central Ltd.
Journal title
  • Journal of the International AIDS Society
Journal volume
  • 12
Journal issue
  • 1
Page start
  • 17
  • English
Is the article or chapter peer-reviewed?
  • Yes
  • 1758-2652
Bibliographic citation
  • Journal of the International AIDS Society. 2009 Aug 27;12(1):17
  • Open Access
  • BioMed Central Ltd

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