Skip to main content
Journal of Urban Health : Bulletin of the New York Academy of Medicine logoLink to Journal of Urban Health : Bulletin of the New York Academy of Medicine
. 2000 Dec;77(4):723–734. doi: 10.1007/BF02344033

Reasons given for disclosure of maternal HIV status to children

Daniel J Pilowsky 1,2,, Nancy Sohler 2, Ezra Susser 1,2
PMCID: PMC3456764  PMID: 11194312

Abstract

The purpose of this investigation was to ascertain the reasons given by mothers diagnosed with AIDS (acquired immunodeficiency syndrome) for disclosing or not disclosing their HIV (human immunodeficiency virus) status to their children, a dilemma faced by most HIV-infected parents and those who counsel them. We interviewed 29 mothers residing in one of two New York City facilities that provide housing and medical treatment for adults with AIDS. The majority of these mothers do not live with their children, but all had recent face-to-face contact with them. The two reasons most frequently considered important for disclosing to children were that disclosure was the “right thing to do” and the need to make arrangements for children's future in case of maternal death or incapacity. The reason most frequently considered important for not disclosing was maternal concern about discussing death and dying with children. These findings have significant implications for counseling of HIV-positive parents.

Key Words: Child welfare, Children, Disclosure, HIV, Mothers

Full Text

The Full Text of this article is available as a PDF (606.7 KB).

References

  • 1.Armistead L, Klein K, Forehand R, Wierson M. Disclosure of parental HIV infection to children in the families of men with hemophilia: description, outcomes, and the role of family process. J Fam Psychol. 1997;11:49–61. [Google Scholar]
  • 2.Rotheram-Borus MJ, Draimin BH, Reid HM, Murphy DA. The impact of illness disclosure and custody plans on adolescents whose parents live with AIDS. AIDS. 1997;11:1159–1164. doi: 10.1097/00002030-199709000-00012. [DOI] [PubMed] [Google Scholar]
  • 3.Armistead L, Forehand R. For whom the bell tolls: parenting decisions and challenges faced by mothers who are HIV seropositive. Clin Psychol: Sci Pract. 1995;2:239–250. [Google Scholar]
  • 4.Bor R, Miller R, Goldman E. HIV/AIDS and the family: a review of research in the first decade. J Fam Ther. 1993;15:187–204. doi: 10.1111/j.1467-6427.1993.00753.x. [DOI] [Google Scholar]
  • 5.Tasker M. How Can I Tell You: Secrecy and Disclosure with Children When a Family Member Has AIDS. Bethesda, MD: Association for the Care of Children's Health; 1992. [Google Scholar]
  • 6.Wiener LS, Battles HB, Heilman NE. Factors associated with parents decision to disclose their HIV diagnosis to their children. Child Welfare. 1998;77:115–135. [PubMed] [Google Scholar]
  • 7.Boyd-Franklin N, Aleman JDC, Steiner Gl, Drelich EW, Norford BC. Family systems interventions and family therapy. In: Boyd-Franklin N, Steiner GL, Boland MG, editors. Children, Families and HIV/AIDS: Psychosocial and Therapeutic Issues. New York: Guilford Press; 1995. pp. 115–126. [Google Scholar]
  • 8.Faithfull J. HIV-positive and AIDS-infected women: challenges and difficulties of mothering. Am J Orthopsychiatry. 1997;67:144–151. doi: 10.1037/h0080219. [DOI] [PubMed] [Google Scholar]
  • 9.Moneyham L, Seals B, Demi A, Sowell R, Cohen L, Guillory J. Experiences of disclosure in women infected with HIV. Health Care Women Int. 1996;17:209–221. doi: 10.1080/07399339609516236. [DOI] [PubMed] [Google Scholar]
  • 10.Simoni JM, Mason HR, Marks G, Ruiz MS, Reed D, Richardson JL. Women's self-disclosure of HIV infection: rates, reasons, and reactions. J Consult Clin Psychol. 1995;63:474–478. doi: 10.1037//0022-006x.63.3.474. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 11.Pilowsky DJ, Sohler N, Susser E. The Parent Disclosure Interview. AIDS Care. 1999;11:447–452. doi: 10.1080/09540129947839. [DOI] [PubMed] [Google Scholar]
  • 12.Wiener LS, Battles HB, Heilman N, Sigelman CK, Pizzo PA. Factors associated with disclosure of diagnosis to children with AIDS. Pediatr AIDS HIV Infect: Fetus to Adolesc. 1996;7:310–324. [PubMed] [Google Scholar]
  • 13.Bor R. Disclosure. Vancouver Conference review. AIDS Care. 1997;9:49–53. [PubMed] [Google Scholar]
  • 14.Testa MF. Conditions for risk for substitute care. Child Youth Serv Rev. 1992;14(1/2):27–35. [Google Scholar]

Articles from Journal of Urban Health : Bulletin of the New York Academy of Medicine are provided here courtesy of New York Academy of Medicine

RESOURCES