Comparing fears about paediatric HIV disclosure to the lived experiences of parents and guardians: a prospective cohort study.

Journal Article (Journal Article)


We aimed to: (1) follow parents and guardians through the process of paediatric HIV disclosure to understand how often pre-disclosure worries are realised; and (2) estimate the effects of disclosure on child, caregiver, and family well-being.


We conducted a 12-month prospective cohort study in Zimbabwe with 123 primary caregivers of children ages 9 to 15 years who were HIV positive but did not know their serostatus at baseline. By the end of the study period 65 caregivers reported that their child learned his or her HIV-positive status.

Main outcome measures

We used three waves of data to compare caregivers' pre-disclosure worries to post-disclosure reports and to characterise associations between disclosure and well-being of the child (Strengths and Difficulties Questionnaire), caregiver (Patient Health Questionnaire-9), and family (Family Relationship Quality) over time.


Caregivers' pre-disclosure worries and fears about how their child would react to disclosure of their HIV status largely went unrealised. Furthermore, we did not find strong evidence of clinically-important increases in problems on average following disclosure.


Findings support the call to identify supportive intervention strategies that address caregiver fears at the beginning of the disclosure process.

Full Text

Duke Authors

Cited Authors

  • Puffer, ES; Finnegan, A; Schenk, K; Langhaug, L; Rusakaniko, S; Choi, Y; Mahaso, S; Simmons, R; Green, EP

Published Date

  • February 2022

Published In

Start / End Page

  • 1 - 17

PubMed ID

  • 35188010

Pubmed Central ID

  • PMC9392813

Electronic International Standard Serial Number (EISSN)

  • 1476-8321

International Standard Serial Number (ISSN)

  • 0887-0446

Digital Object Identifier (DOI)

  • 10.1080/08870446.2022.2041637


  • eng