Disclosure of the HIV infection status in children

  • Sasi Arun
  • Ajay K. Singh
  • Rakesh Lodha
  • S.K. Kabra
Original Article



To determine the perception of caregivers about the disclosure of the diagnosis of HIV infection in children.


Caregivers of fifty HIV-infected children were enrolled in the study after taking written informed consent. They were interviewed using a structured questionnaire. The questionnaire included information on the demographic details, questions about the disclosure status of HIV infection in children and perceptions about the disclosure of status to child.


Only 7 out of the 50 children (14%) were aware of their HIV status while 43/50 (86%) were unaware; as reported by their guardians/ parents. Only 6 percent children (3/50) were given factual information about the disease while 68% (34/50) were given no information. Majority of caregivers felt mid-teenage as the appropriate age for disclosing the HIV infection status and that the parents were the appropriate persons to reveal the infection status (21/50, 42%).


There is need to develop and implement guidelines for disclosure of HIV infection status to HIV-infected children in resource limited settings.

Key words

HIV Children Disclosure 


  1. 1.
    UNAIDS/ WHO. AIDS Epidemic Update- December 2007.Google Scholar
  2. 2.
    Turner BJ, McKee L, Pantell RH et al. Health care of children and adults with acquired immunodeficiency syndrome. Arch Pediatr Adolesc Med 1996; 150:615–622.PubMedGoogle Scholar
  3. 3.
    Woodard LJ, Pamies RJ. The disclosure of the diagnosis of cancer. Prim Care 1992; 19:657–663.PubMedGoogle Scholar
  4. 4.
    American Academy of Pediatrics. Disclosure of illness status to children and adolescents with HIV infection. Pediatrics 1999; 103: 164–166.CrossRefGoogle Scholar
  5. 5.
    Gerson AC, Joyner M, Fosarelli P et al. Disclosure of HIV diagnosis to children: when, where, why and how. J Pediatr Health Care 2001; 15: 161–167.PubMedGoogle Scholar
  6. 6.
    Slavin LA, O’Malley JE, Koocher GP, Foster DJ. Communication of the Cancer diagnosis to pediatric patients: impact in long term adjustment. Am J Psychiatry 1982; 139: 179–183PubMedGoogle Scholar
  7. 7.
    Wiener L, Theut S, Steinberg SM, Riekert KA, Pizzo PA. The HIV infected child: parental responses and psychosocial implications. Am Ortho Psychiatry 1994; 64: 485–492.Google Scholar
  8. 8.
    Lipson M. Disclosure of diagnosis to children with human immunodeficiency virus or acquired immunodeficiency syndrome. J Dev Behav Pediatr 1994; 15: S61–S65.CrossRefPubMedGoogle Scholar
  9. 9.
    Oberdorfer P, Puthanakit T, Louthrenoo O et al. Disclosure of HIV/AIDS diagnosis to HIV-infected children in Thailand. J Paediatr Child Health 2006; 42: 283–288.CrossRefPubMedGoogle Scholar
  10. 10.
    Funck-Brentano I, Costagliola D, Seibel N, Straub E, Tardieu M, Blanche S. Patterns of disclosure and perceptions of the humanimmunodeficiency virus in infected elementary school-age children. Arch Pediatr Adolesc Med 1997; 151: 978–985.PubMedGoogle Scholar
  11. 11.
    Bor R. Disclosure (Vancouver conference review). AIDS Care 1996; 9: 49–53.Google Scholar
  12. 12.
    Cohen J, Reddington C, Jacobs D et al. School-related issues among HIV infected children. Pediatrics 1997; 100: E8.CrossRefPubMedGoogle Scholar
  13. 13.
    Schonfeld DJ. Child’s cognitive understanding of illness. In Lewis M, ed. Child and Adolescent Psychiatry: A Comprehensive Textbook, 3rd ed. Philadelphia; Lippincott Williams and Wilkins, 2002; 1119–1123.Google Scholar
  14. 14.
    Ledlie SW. Diagnosis disclosure by family caregivers to children who have perinatally acquired HIV disease: when the time comes. Nurs Res 1999; 48: 141–149.CrossRefPubMedGoogle Scholar
  15. 15.
    Moodley K, Myer L, Michaels D, Cotton M. Paediatric HIV disclosure in South Africa - caregivers’ perspectives on discussing HIV with infected children. S Afr Med J 2006; 96: 201–204.PubMedGoogle Scholar
  16. 16.
    Apateerapong W, Pancharoen C, Eggermont L, Koekkoek S, Chuamchaitrakool A, Cheunyam T et al. HIV Disclosure in children. Int Conf AIDS 2004;15: abstract no. TuPeB4408.Google Scholar
  17. 17.
    Bachanas PJ, Kullgren KA, Schwartz KS et al. Predictors of psychological adjustment in school-age children infected with HIV. J Pediatr Psychol 2001; 26: 343–352.CrossRefPubMedGoogle Scholar
  18. 18.
    Lipson M. Disclosure of diagnosis to children with human immunodeficiency virus or acquired immunodeficiency syndrome. J Dev Behav Pediatr 1994; 15: S61–S65.CrossRefPubMedGoogle Scholar
  19. 19.
    Kouyoumdjian FG, Meyers T, Mtshizana S. Barriers to disclosure to children with HIV. J Trop Pediatr 2005; 51: 285–287.CrossRefPubMedGoogle Scholar

Copyright information

© Dr. K C Chaudhuri Foundation 2009

Authors and Affiliations

  • Sasi Arun
    • 1
  • Ajay K. Singh
    • 1
  • Rakesh Lodha
    • 1
  • S.K. Kabra
    • 1
  1. 1.Department of PediatricsAll India Institute of Medical SciencesAnsari Nagar, New DelhiIndia

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