Understanding the process of disclosure to HIV-infected children in Kinshasa, Democratic Republic of the Congo Public Deposited

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  • September 26, 2019
  • Vaz, Lara Maria
    • Affiliation: Gillings School of Global Public Health, Department of Health Behavior
  • In 2006, 2.5 million children under age 15 were living with HIV infection, over 90 percent in developing countries. Antiretroviral treatment (ART) increases the likelihood that HIV-infected children will survive to adolescence and beyond. Children on ART are often not told their diagnosis, despite some evidence that informing them can have positive psychosocial and clinical outcomes. This study's goal was to identify factors associated with disclosure patterns to HIV-infected children in the Democratic Republic of Congo (DRC), in order to develop appropriate, effective interventions to support families. We conducted 201 structured interviews with primary caregivers who had not informed their child, ages 5-17, of his/her diagnosis, measuring factors at individual, interpersonal, and community levels possibly associated with disclosure patterns. In-depth interviews were conducted with 8 caregiver-child dyads whose children, ages 8-17, had been told their diagnosis; these focused on experiences throughout the disclosure process, which to date have not been documented in sub-Saharan Africa. Caregivers who had not yet told their child of her/his HIV status fell into one of three groups: nearly 50% had given their child no information, 15% had given partial information; and 33% had provided misleading information. Multinomial logistic regression found these patterns to be associated with: (1) caregiver gender, age, and stigmatizing attitudes placing blame for infection; (2) child's age; and (3) characteristics of the caregiver-child relationship. Findings from the in-depth interviews on the moments before, during and after disclosure revealed that caregivers were influenced to disclose by concerns about treatment adherence, the eminent onset of adolescent sexual activity, and their desire to protect their child as well as others. Children experienced disclosure as a discrete event; although many had subsequent questions and concerns, most did not discuss them with others. In sum, disclosure to HIV-infected children is a process that can take multiple paths. Providers should work closely with caregivers to understand how communication patterns evolve, assist them in communicating with their child, and support them through full disclosure. Providers should work with HIV-infected children, before, during, and after disclosure to create opportunities for children to share experiences with each other.
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  • In Copyright
  • Eng, Eugenia
  • Open access

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