Illness Narratives of Children Living with HIV Who Do Not Know Their HIV Status in Ghana: I’m Sick, But I Don’t Know the Sickness—A Qualitative Study

the Sankofa Study Team

Research output: Contribution to journalArticlepeer-review

Abstract

Despite available guidelines for disclosure of HIV status to children, most children living with HIV are unaware of their diagnosis. We sought to characterize the concepts of illness and treatment among children living with HIV who do not know their status. As part of the Sankofa trial we interviewed 435 children aged 6–18 enrolled in clinical care at pediatric HIV clinics at two teaching hospitals in Ghana. Theoretic thematic analysis generated themes among responses. The children believe they come to the clinic to collect medication, to address specific symptoms, to prevent and treat ‘sickness’, or as part of their routine. Most children learned of their ‘illness’ from a family member. A majority (73.5%) of children had never talked about their ‘illness’ with anyone else; many feared consequences. Children living with HIV who do not know their status exhibit signs of anticipated and internalized stigma regarding their unknown ‘illness.’ An understanding of the way children conceptualize their illness has implications for health promotion and the provision of appropriate information to children living with HIV. ClinicalTrials.gov Identifier NCT01701635.

Original languageEnglish (US)
Pages (from-to)3225-3231
Number of pages7
JournalAIDS and behavior
Volume24
Issue number11
DOIs
StatePublished - Nov 1 2020

Keywords

  • Children living with HIV/AIDS (CLHIV)
  • Disclosure
  • Illness narratives
  • Sub-Saharan Africa

ASJC Scopus subject areas

  • Social Psychology
  • Public Health, Environmental and Occupational Health
  • Infectious Diseases

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