Advocacy care on HIV disclosure to children

Nurs Inq. 2019 Apr;26(2):e12278. doi: 10.1111/nin.12278. Epub 2018 Dec 18.

Abstract

Children with HIV are dependent on taking continuous medication and care, and family preparation is required when disclosing HIV. This study aimed to unveil families' experiences with HIV disclosure to children under 13 years old. Eight family members who have disclosed HIV to seropositive children were interviewed in-depth and individually. The fieldwork took place at a public paediatric outpatient hospital in Rio de Janeiro. The results showed that the family members' discourse highlighted two ways of knowing their own condition and disclosing the condition of the children with HIV. First, they needed to address the communication of bad news and discover their own HIV status through their children's disease. Second, the disclosure was a process constituted by four stages: preparing for disclosure, identifying the time, deciding how and where to tell, and instilling silence after disclosure. They also recognized that nurses had a role in the process as part of an interprofessional team. Nurses can develop advocacy care and empower family members in the preparation of safe HIV disclosure. By systematizing and institutionalizing the care advocacy process, nurses may enable caretakers and children to participate in their therapeutic management, improving adherence to the treatment and self-care with autonomy.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Ambulatory Care Facilities / organization & administration
  • Ambulatory Care Facilities / statistics & numerical data
  • Brazil
  • Child
  • Child, Preschool
  • Disabled Children / psychology*
  • Disabled Children / statistics & numerical data
  • Female
  • HIV Infections / diagnosis*
  • HIV Infections / psychology
  • Humans
  • Male
  • Patient Advocacy / psychology
  • Patient Advocacy / standards*
  • Patient Advocacy / statistics & numerical data
  • Qualitative Research
  • Social Stigma
  • Social Support
  • Truth Disclosure*