The objective of this study was to assess parental decision-making about illness disclosure to human immunodeficiency virus (HIV)-infected children. This is a cross-sectional study of 51 children with HIV infection based on parent interviews, child cognitive testing, clinical assessments and medical records. Only 43% of children had been told their HIV diagnosis. Qualitative analysis of parental decision- making about illness disclosure varied by child developmental level. Factors influencing parental decision to disclose the child’s HIV status including parental communication style, parental illness, child’s rights, treatment adherence, child questions and provider pressures, whereas concerns about HIV stigma and potential emotional distress were most frequently identified as reasons for non- disclosure. Central decision-making factors for parental HIV disclosure and reported outcomes of disclosure are described. Pediatric HIV disclosure represents a complex task for parents caring for the HIV-infected child, one in which the child’s development and the family’s community should be considered in the setting of a potentially stigmatizing infectious illness.
Agresti, A.
(1984). Analysis of ordinal categorical data. New York: Wiley.
2.
American Academy of Pediatrics
. (1999). Disclosure of illness status to children and adolescents with HIV infection. Pediatrics, 103, 164-166.
3.
Bearison, D.J.
(1991). ‘They never want to tell you’: Children talk about cancer. Cambridge, MA: Harvard University Press.
4.
Bibace, R.
, & Walsh, M.E. (1980). Development of children’s concepts of illness. Pediatrics, 66, 912-917.
5.
Billings, A.G.
, & Moos, R.H. (1982). Social support and functioning among community and clinical groups: A panel model. Journal of Behavioral Medicine, 5, 300-301.
6.
Brown, L.K.
, Lourie, K.J., & Pao, M. (2000). Children and adolescents living with HIV and AIDS: A review. Journal of Child Psychology and Psychiatry and Allied Disciplines, 41(1), 81-96.
7.
Byers, R.H. Jr
, Caldwell, M.B., Davis, S., Gwinn, M., & Lindegren, M.L. (1998). Projection of AIDS and HIV incidence among children born infected with HIV. Statistics in Medicine, 17, 169-181.
8.
Chase, C.
, Ware, J., Hittelman, J., Blasini, I., Smith, R., Llorente, A., Anisfeld, E., Diaz C., Fowler M.G., Moye, J., & Kaligh, L.I. (2000). Early cognitive and motor development among infants born to women infected with human immunodeficiency virus. Women and Infants Transmission Study Group. Pediatrics, 106(2), E25.
9.
Chesler, M.A.
, Paris, J., & Barbarin, O.A. (1986). ‘Telling’ the child with cancer: Parental choices to share information with ill children. Journal of Pediatric Psychology, 11, 497-515.
10.
Chin, J.
(1994). The growing impact of the HIV/AIDS pandemic on children born to HIV- infected women. Clinics in Perinatology, 21, 1-4.
11.
Claflin, C.J.
, & Barbarin, O.A. (1991). Does ‘telling’ less protect more? Relationships among age, information disclosure, and what children with cancer see and feel. Journal of Pediatric Psychology, 16, 169-191.
12.
Funck-Bretano, I.
, Costagliola, D., Seibel, N., Straub, E., Tardieu, M., & Blanche, S. (1997). Patterns of disclosure and perceptions of the human immunodeficiency virus in infected elementary school-age children. Archives of Pediatrics and Adolescent Medicine, 151, 978-985.
13.
Grubman, S.
, Gross, E., Lerner-Weiss, N., Hernandez, M., McSherry, G.D., Hoyt, L.G., Boland, M., & Oleske, J.M. (1995). Older children and adolescents living with perinatally acquired human immunodeficiency virus infection. Pediatrics, 95, 657-663.
14.
Havens, J.
, Whitaker, A., Feldman, J., & Erdhardt, A.A. (1994). Psychiatric morbidity in school-age children with congenital human immunodeficiency virus infection: A pilot study. Journal of Developmental & Behavioral Pediatrics, 3S, S18-S25.
15.
Katz, E.
, & Jay, S. (1984). Psychological aspects of cancer in children, adolescents, and their families. Clinical Psychology Review, 4, 525-542.
16.
Ledlie, S.W.
(1999). Diagnosis disclosure by family caregivers to children who have perinatally acquired HIV disease: When the time comes. Nursing Research, 48, 141-149.
17.
Lindegren, M.L.
, Steinberg, S., & Byers, R.H. Jr. (2000). Epidemiology of HIV/AIDS in children. Pediatric Clinics of North America, 47(1), 1-20.
18.
Lipson, M.
(1993). What do you say to a child with AIDS?Hastings Center Report, 23, 6-12.
19.
Lipson, M.
(1994). Disclosure of diagnosis to children with human immunodeficiency virus or acquired immunodeficiency syndrome. Journal of Developmental and Behavioral Pediatrics, 15, 61-65.
20.
Moos, R.
(1974). Family Environment Scale. Palo Alto, CA: Consulting Psychologists Press.
21.
Perrin, E.C.
, & Gerrity, P.S. (1981). There’s a demon in your belly: Children’s understanding of illness. Pediatrics, 67, 841-849.
22.
Slavin, L.A.
, O’Malley, J.E., Koocher, G.P., & Foster, D.J. (1982). Communication of the cancer diagnosis to pediatric patients: Impact in long term adjustment. American Journal of Psychiatry, 139, 179-183.
23.
Siegel, K.
, & Gorey, E. (1994). Childhood bereavement due to parental death from acquired immunodeficiency syndrome. Journal of Developmental and Behavioral Pediatrics, 15, S66-S77.
24.
Smith, J.A.
(1996). Beyond the divide between cognition and discourse: Using interpretative phenomenological analysis in health psychology. Psychological Health, 11, 261-271.
25.
Spinetta, J.
(1980). Disease-related communication: How to tell. In J. Kellerman (Ed.), Psychological aspects of childhood cancer (pp. 257-269).
26.
Springfield, IL
: Charles C. Thomas. Spinetta, J., Rigler, D., & Koron, M. (1973). Anxiety in the dying child. Pediatrics, 52, 841.
27.
Woodard, L.J.
, & Pamies, R.J. (1992). The disclosure of the diagnosis of cancer. Primary Care, 19, 657-663.
