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Innovation (Abingdon). 2011;24(1):199-208. doi: 10.1080/13511610.2011.553506.

Changing methods of disclosure. Literature review of disclosure to children with terminal illnesses, including HIV.

Innovation (Abingdon, England)

G Anita Heeren

Affiliations

  1. Center for Health Behavior and Communication Research, School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.

PMID: 24634603 PMCID: PMC3954639 DOI: 10.1080/13511610.2011.553506

Abstract

More than 30 years after the first discovery of the deadly HIV virus, and in the wake of increased knowledge of transmission, treatment and behavioral intervention development, parents are still faced with the difficult task of whether, when and how to inform their child about her or his HIV status. Except for some general ethical considerations, there are no national or international guidelines available for handling HIV status disclosure to a child by parents and health professionals. Most studies on disclosure address the problem of stigma and the barriers to disclosure of HIV-positive status by adults to their sexual partners, caretakers, families and communities, but very few studies focus on disclosure to HIV-positive children. The majority of the studies that address disclosure to children limit themselves to stipulating reasons for barriers to such disclosure instead of the skills and knowledge necessary for effective disclosure to a child. Increasing availability of therapy for HIV across the world presses the issue of disclosure to the child. Even so, disclosure for children who are HIV-positive due to vertical transmission continues to be very difficult. There is a lack of interventions that consider guidelines for healthcare professionals, parents or persons involved with taking care of HIV-positive children. These interventions should be designed in an understanding manner towards the culture where they might be implemented and be as appropriate in the view of integrating different family structures and the child's development.

Keywords: HIV vertical transmission; child; disclosure; parent; stigma

References

  1. J Pediatr Health Care. 2001 Jul-Aug;15(4):161-7 - PubMed
  2. Lancet. 2006 Aug 5;368(9534):447 - PubMed
  3. Psychosom Med. 2000 Mar-Apr;62(2):238-47 - PubMed
  4. Am J Nurs. 1971 Jun;7(6):1168-72 - PubMed
  5. J Child Psychol Psychiatry. 2001 May;42(4):427-38 - PubMed
  6. J Paediatr Child Health. 2006 May;42(5):283-8 - PubMed
  7. S Afr Med J. 2003 Sep;93(9):682-8 - PubMed
  8. Psychiatr Enfant. 1995;38(1):109-39 - PubMed
  9. AIDS Care. 2007 Jul;19(6):811-6 - PubMed
  10. AIDS Patient Care STDS. 2010 Apr;24(4):247-56 - PubMed
  11. J Trop Pediatr. 2006 Aug;52(4):293-5 - PubMed
  12. J Acquir Immune Defic Syndr. 2002 Nov 1;31(3):309-17 - PubMed
  13. J Clin Ethics. 2001 Summer;12(2):150-7 - PubMed
  14. J Pediatr Psychol. 1991 Apr;16(2):169-91 - PubMed
  15. J Palliat Med. 2008 Dec;11(10):1309-13 - PubMed
  16. J Trop Pediatr. 2005 Oct;51(5):285-7 - PubMed
  17. J Pediatr Psychol. 2001 Sep;26(6):343-52 - PubMed
  18. J Int AIDS Soc. 2009 Aug 27;12:17 - PubMed
  19. Pediatrics. 1980 Dec;66(6):912-7 - PubMed
  20. AIDS Patient Care STDS. 2006 Jan;20(1):36-43 - PubMed
  21. Child Care Health Dev. 2000 Jan;26(1):29-40 - PubMed
  22. Pediatr AIDS HIV Infect. 1996 Oct;7(5):310-24 - PubMed
  23. AIDS Care. 2008 Oct;20(9):1138-45 - PubMed
  24. Arch Pediatr Adolesc Med. 1996 Jun;150(6):615-22 - PubMed
  25. J Clin Ethics. 2008 Spring;19(1):31-42 - PubMed
  26. Soc Sci Med. 2007 Sep;65(6):1249-59 - PubMed
  27. J Adolesc Health. 2002 Mar;30(3):161-8 - PubMed
  28. Indian J Pediatr. 2009 Aug;76(8):805-8 - PubMed
  29. S Afr Med J. 2006 Mar;96(3):201-4 - PubMed
  30. AIDS Behav. 2006 Jul;10(4 Suppl):S85-93 - PubMed
  31. Pediatrics. 1975 Dec;56(6):1035-7 - PubMed
  32. J Assoc Nurses AIDS Care. 2005 May-Jun;16(3):11-21 - PubMed
  33. Soc Sci Med. 2009 Jun;68(12):2271-8 - PubMed
  34. J Trop Pediatr. 2010 Dec;56(6):440-2 - PubMed
  35. AIDS Care. 2009 Mar;21(3):389-95 - PubMed
  36. Soc Sci Med. 2010 Jan;70(2):313-20 - PubMed
  37. J Consult Clin Psychol. 1978 Dec;46(6):1540-1 - PubMed
  38. AIDS Care. 2008 Aug;20(7):842-52 - PubMed
  39. Soc Sci Med. 2007 May;64(9):1823-31 - PubMed
  40. Am J Public Health. 2005 May;95(5):808-15 - PubMed
  41. Pediatrics. 1997 Jul;100(1):E8 - PubMed
  42. J Soc Pediatr Nurs. 2000 Jan-Mar;5(1):5-14 - PubMed
  43. J Dev Behav Pediatr. 2004 Jun;25(3):181-9 - PubMed
  44. J Pediatr Health Care. 2000 Sep-Oct;14(5):235-43 - PubMed
  45. AIDS. 2008 Apr 23;22(7):797-805 - PubMed
  46. J Pediatr Psychol. 1986 Dec;11(4):497-516 - PubMed

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