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Diagnosis disclosure in HIV-infected Thai children
Vitharon Boon-Yasidhi1, Uraporn Kottapat, Yuitiang Durier
1Division of Child Psychiatry, Department of Pediatrics, Faculty of Medicine, Siriraj Hospital, Mahidol University, Bangkok, Thailand. sibvy@mahidol.ac.th
Insights
Diagnosis disclosure for children with perinatally acquired HIV infection remains low in Thailand. Most caregivers are reluctant to inform children about their HIV status, highlighting a need for disclosure guidelines.
Area of Science:
- Pediatric infectious diseases
- Clinical psychology
- Public health
Background:
- Growing population of perinatally HIV-infected children reaching school age and adolescence.
- Disclosure of HIV diagnosis is a critical clinical concern.
- International studies indicate many children remain unaware of their HIV status.
Purpose of the Study:
- To evaluate the diagnosis disclosure status of perinatally HIV-infected children in Thailand.
- To understand caregivers' reasons for disclosing or withholding HIV status.
- To assess disclosed children's perception of their illness.
Main Methods:
- Interviews with primary caregivers of 96 HIV-infected children (≥5 years old).
- Assessment of child disclosure status and caregiver rationale.
- Interviews with disclosed children regarding illness perception.
Main Results:
- Only 19.8% (19/96) of children had been informed of their HIV diagnosis.
- Disclosed children had a mean age of 9.6 years.
- Caregivers cited child's age, potential psychological harm, and secrecy concerns as reasons for non-disclosure. 84% of disclosed children perceived their illness as HIV/AIDS.
Conclusions:
- Diagnosis disclosure rates are low among perinatally HIV-infected Thai children.
- Caregiver reluctance to disclose HIV status is prevalent.
- Guidelines are needed to support caregivers and children through the disclosure process.
Background:
Increasing number of children with perinatally acquired HIV-infection are now surviving into school age and adolescence. Disclosure of diagnosis to these children has become an important clinical issue. Clinical reports and studies from other countries suggest that a significant number of these children have not been told of their HIV status. The objective of this study was to assess diagnosis disclosure status of perinatally acquired HIV-infected Thai children.
Material And Method:
Primary caregivers of 96 HIV-infected children aged 5 years and older were interviewed to assess the child disclosure status and the caregivers reasons to disclose or not to disclose the diagnosis to the child. The disclosed children were also interviewed to assess perception of their illness.
Results:
Nineteen of 96 children (19.8%) had been told of their HIV diagnosis by their caregivers. The mean age of the disclosed children was 9.6 years. Eighty-four percent of the disclosed children reported perception of their illness as having HIV infection or AIDS. Common reasons for non-disclosing were concerns that the child was too young, that the child might be psychologically harmed, and that the child could not keep the secret. Of 77 non-disclosing caregivers, 54 reported that they plan to disclose HIV status to the children in the future.
Conclusion:
This study demonstrates that diagnosis disclosure was made in only 1/5 of HIV-infected children, and that most of the caregivers were reluctant in disclosing serostatus to the child. Development of an appropriate guideline for assisting the caregivers and the children to deal with the difficult disclosure process is needed.
