Disclosure of an HIV diagnosis to children: History, current research, and future directions

Journal of Developmental and Behavioral Pediatrics

Volumn 28, Issue 2, 2007, Pages 155-166

  Wiener, Lori ^a,c   Mellins, Claude Ann ^b   Marhefka, Stephanie ^b   Battles, Haven B ^a  

^a NATIONAL CANCER INSTITUTE   (United States)

^b NEW YORK STATE PSYCHIATRIC INSTITUTE   (United States)

^c 10/SE Pediatric Clinic   (United States)

Author keywords

Communication; Diagnostic disclosure; Pediatric HIV; Psychological distress; Systematic literature review

Indexed keywords

ANTIRETROVIRUS AGENT;

CHILDHOOD CANCER; CLINICAL PRACTICE; CONSENSUS; FAMILY; HIGHLY ACTIVE ANTIRETROVIRAL THERAPY; HISTORY; HUMAN; HUMAN IMMUNODEFICIENCY VIRUS INFECTION; INTERPERSONAL COMMUNICATION; INTERVENTION STUDY; MEDICAL RESEARCH; PATIENT COMPLIANCE; PATIENT INFORMATION; PRIORITY JOURNAL; PSYCHOLOGICAL ASPECT; REVIEW; SYSTEMATIC REVIEW;

ADAPTATION, PSYCHOLOGICAL; ADOLESCENT; ANTI-RETROVIRAL AGENTS; CHILD; FAMILY THERAPY; HIV INFECTIONS; HIV SEROPOSITIVITY; HUMANS; INTERNAL-EXTERNAL CONTROL; NEOPLASMS; PATIENT COMPLIANCE; SICK ROLE; SOCIAL SUPPORT; TRUTH DISCLOSURE;

EID: 34247251892     PISSN: 0196206X     EISSN: None     Source Type: Journal    
DOI: 10.1097/01.DBP.0000267570.87564.cd     Document Type: Review

References (74)

1. Oleske J, Minnefor A, Cooper R et al. Immune deficiency syndrome in children. JAMA. 1983;249:2345-2349.
2. Gortmaker SL, Hughes M, Cervia J et al. Pediatric AIDS Clinical Trials Group Protocol 219 Team. N Engl J Med 2001;345:1522-1528.
3. Havens JF, Mellins CA, Hunter J. Psychiatric Aspects of HIV/AIDS in childhood and adolescence. In: Rutter M, Taylor E, eds. Child and Adolescent Psychiatry: Modern Approaches, 4th ed. Oxford: UK Blackwell; 2002:828-841.
4. American Academy of Pediatrics Committee on Pediatrics AIDS. Disclosure of illness status to children and adolescents with HIV infection. Pediatrics. 1999;103:164-166.
5. Walker G. In the midst of winter. New York: Norton; 1993.
6. Lipson M. Disclosure of diagnosis to children with human immunodeficiency virus or acquired immunodeficiency syndrome. J Dev Behav Pediatr. 1994;15:S61-S65.
7. Funck-Brentano I. Informing a child about his illness in HIV infection: words and meaning. Psychiatr Enfant. 1995;38:109-139.
8. Wiener L, Septimus A, Grady C. Psychosocial support and ethical issues for the child and family. In: Pizzo P, Wilfert K, eds. Pediatric AIDS: The Challenge of HIV Infection in Infants, Children, and Adolescents, 3rd ed. Baltimore, MD: Williams & Wilkins; 1998:703-727.
9. Mellins CA, Brackis-Cott E, Dolezal Cet al. Patterns of HIV status disclosure to perinatally HIV-infected children and subsequent mental health outcomes. Clin Child Psychol Psychiatry. 2002;7:101-114.
10. Ng WYK, Mellins CA, Ryan S. The mental health treatment of children and adolescents perinatally infected with HIV. In: Abrams E, ed. Topic of the Month; 2004. http://web.archive.org/web/20040214070503/hivfiles.org/index. html. Accessed 3/12/07.
11. Harris NS, Thompson SJ, Ball R, Hussey J, Sy F. Zidovudine and perinatal human immunodeficiency virus type 1 transmission: a population-based approach. Pediatrics. 2002;109:e60.
12. 2004 Report on the Global AIDS Epidemic. UNAIDS Web site. 2004. Available at: http://www.unaids.org/bangkok2004/report.html. Accessed 11/14/2005.
13. Katz ER, Jay SM. Psychological aspects of cancer in children, adolescents, and their families. Clin Psychol Review. 1984;4:525-542.
14. Spinetta JJ. Disease-related communication: how to tell. In: Kellerman J, ed. Psychological Aspects of Childhood Cancer. Springfield, IL: Charles C. Thomas; 1980:257-269.
15. Gaylin W, Macklin R, eds. Who Speaks for the Child? The Problems of Proxy Consent. New York, NY: Plenum Press; 1982.
16. Bibace R, Walsh ME. Development of children's concepts of illness. Pediatrics. 1980;66:912-917.
17. Spinetta J, Maloney J. Death anxiety in the outpatient leukemic child. Pediatrics. 1975;56:1034-1037.
18. Waechter E. Children's awareness of fatal illness. Am J Nurs. 1973;71:1168-1172.
19. Spinetta JJ, Maloney J. Death anxiety in the outpatient leukemic child. Pediatrics. 1975;56:1034-1037.
20. Claflin CJ, Barbarin OA. Does telling lies protect more? Relationships among age, information disclosure, and what children with cancer see and feel. J Pediatr Psychiatry. 1991;16:169-191.
21. Chesler MA, Paris J, Barbarin OA. "Telling" the child with cancer: parental choices to share information with ill children. J Pediatr Psychol. 1986;11:497-516.
22. Slavin LA, O'Malley JE, Koocher GP, Foster DJ. Communication of the cancer diagnosis to pediatric patients: impact on long-term adjustment. Am J Psychiatry. 1982;139:179-183.
23. Spinetta JJ, Maloney LJ. The child with cancer: patterns of communication and denial. J Consult Clin Psychol. 1978;46:1540-1541.
24. Perrin EC, Gerrity PS. There's a demon in your belly: children's understanding of illness. Pediatrics. 1981;67:841-849.
25. Lester P, Chesney M, Cooke Met al. When the time comes to talk about HIV: Factors associated with diagnostic disclosure and emotional distress in HIV-infected children. J Acquir Immune Defic Syndr. 2002;31:309-317.
26. Nagler SF, Adnopoz J, Forsyth BWC. Uncertainty, stigma and secrecy: psychological aspects of AIDS for children and adolescents. In: Geballe S, Gruendel J, Andiman W, eds. Forgotten Children of the AIDS Epidemic. New Haven, CT: Yale University Press; 1995:71-82.
27. Havens JF, Mellins CA, Ryan S. Child psychiatry: psychiatric sequelae of HIV and AIDS. In: Sadock B, Sadock V, eds. Kaplan & Sadock's Comprehensive Textbook of Psychiatry, 8th ed. Baltimore, MD: Williams & Wilkins; 2005:3434-3440.
28. Forsyth BW. Psychological aspects of HIV infection in children. Child Adolesc Psychiatr Clin N Am. 2003;12:423-437.
29. Grubman S, Gross E, Lerner-Weiss Net al. Older children and adolescents living with perinatally acquired human immunodeficiency virus infection. Pediatrics. 1995;95:657-663.
30. Courville T. Disclosure versus non-disclosure of HIV/AIDS diagnosis to children with transfusion associated HIV-1 infection. Paper presented at: International Conference on AIDS, July 19-24, 1992.
31. 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.
32. Wolters PL, Brouwers P. Neurobehavioral function and assessment of children and adolescents with HIV-1 infection. In: Zeichner SL, Read JS, eds. Textbook of Pediatric Care. Cambridge: Cambridge University Press; 2005.
33. Wiener L, Martin S. Psychosocial aspects of neurologic impairment in children with AIDS. In: Gendelman H, et aled. The Neurology of AIDS, 2nd ed. Oxford: University Press; 2003.
34. Armstrong DWE, Levy J, Briery B, et al. Merging of Neuroscience, Psychosocial Functioning, and Bioethics in Pediatric HIV. Paper presented at: 110th Annual American Psychological Association, 2002; Chicago, IL.
35. Melvin D. Psychological issues, challenges and achievements. J HIV Ther. 1999;4:77-81.
36. Bachanas PJ, Kullgren KA, Suzman Schwartz Ket al. Predictors of psychological adjustment in school-age children infected with HIV. J Pediatr Psychol. 2001;26:343-352.
37. Cohen J, Reddington C, Jacobs Det al. School-related issues among HIV-infected children. Pediatrics. 1997;100:e8.
38. Flanagan-Klygis E, Ross LF, Lantos Jet al. Disclosing the diagnosis of HIV in pediatrics. J Clin Ethics. 2001;12:150-157.
39. Hammami N, Nostlinger C, Hoeree Tet al. Integrating adherence to highly active antiretroviral therapy into children's daily lives: a qualitative study. Pediatrics. 2004;114:591-597.
40. Hardy MS, Armstrong FD, Routh DKet al. Coping and communication among parents and children with human immunodeficiency virus and cancer. J Dev Behav Pediatr. 1994;15:S49-S53.
41. Instone SL. Perceptions of children with HIV infection when not told for so long: implications for diagnosis disclosure. J Pediatr Health Care. 2000;14:235-243.
42. Lester P, Chesney M, Cooke Met al. Diagnostic disclosure to HIV-Infected children: how parents decide when and what to tell. Clin Child Psychol Psychiatry. 2002;7:85-99.
43. Mellins CA, Ehrhardt AA. Families affected by pediatric acquired immunodeficiency syndrome: sources of stress and coping. J Dev Behav Pediatr. 1994;15:S54-S60.
44. Mettler MA, Borden K, Lopez E, et al. Racial and Ethnic Patterns of Disclosure to Children with HIV. Paper presented at: the American Psychological Association's Annual Conference, August 1997; Chicago, IL.
45. Mialky E, Vagnoni J, Rutstein R. School-age children with perinatally acquired HIV infection: medical and psychosocial issues in a Philadelphia cohort. AIDS Pt Care STDs. 2001;15:575-579.
46. Thorne C, Newell M-L, Peckham CS. Disclosure of diagnosis and planning for the future in HIV-affected families in Europe. Child Care Health Dev. 2000;26:29-40.
47. Wiener L, Battles H, Heilman Net al. Factors associated with disclosure of diagnosis to children with HIV/AIDS. Pediatric AIDS HIV Infect. 1996;7:310-324.
48. Waugh S. Parental views on disclosure of diagnosis to their HIV-positive children. AIDS Care. 2003;15:169-176.
49. Havens JF, Mellins CA, Pilowski D. Mental health issues in HIV-affected women and children. Int Rev Psychiatry. 1996;8:217-225.
50. Mellins CA, Kang E, Leu CSet al. Longitudinal study of mental health and psychosocial predictors of medical treatment adherence in mothers living with HIV disease. AIDS Patient Care STDS. 2003;17:407-416.
51. Blasini I, Chantry C, Cruz Cet al. Disclosure model for pediatric patients living with HIV in Puerto Rico. J Dev Behav Pediatr. 2004;25:181-189.
52. Hardy MS, Routh DK, Armstrong FDet al. Interpersonal distance and coping in children with HIV and cancer. Child Health Care. 1995;24:119-131.
53. New M, Lee S, Pao M. Prevalence of mental health in pediatric HIV: a family perspective. Paper presented at: the NIMH Conference on the Role of Families in Preventing and Adapting to HIV/AIDS; 2003; Washington, DC.
54. Riekert KA, Wiener L, Battles HB. Prediction of psychological distress in school-age children with HIV. Child Health Care. 1999;28:201-220.
55. Wiener L, Battles H. Untangling the web: a close look at diagnosis disclosure among HIV-infected adolescents. J Adolesc Health. 2006;38:307-309.
56. Brackis-Cott E, Mellins CA, Abrams Eet al. Pediatric HIV medication adherence: the views of medical providers from two primary care programs. J Pediatr Health Care. 2003;17:252-260.
57. Marhefka SL, Tepper VT, Brown JLet al. Caregiver psychosocial characteristics and children's adherence to antiretroviral therapy. AIDS Patient Care STDS. 2006;20(6):429-437.
58. Mellins CA, Brackis-Cott E, Dolezal Cet al. The role of psychosocial and family factors in adherence to antiretroviral treatment in human immunodeficiency virus-infected children. Pediatr Infect Dis J. 2004;23:1035-1041.
59. Johnson SB. Managing insulin-dependent diabetes mellitus in adolescence: a developmental perspective. In: Wallander JL, Siegel LJ, eds. Adolescent health problems: Behavioral perspectives. xii, 314 pp. New York: Guilford Press; 1995:265-288.
60. Cooklin A, Barnes G. Taboos and social order: new encounters for family and therapist. In: Imber-Black E, ed. Secrets in Families and Family Therapy. New York: WW Norton; 1993:292-328.
61. Murphy LM, Koranyi K, Crim Let al. Disclosure, stress, and psychological adjustment among mothers affected by HIV. AIDS Patient Care STDS 1999;13:111-118.
62. Wright LS, Wrigt NB, Stimmel DT. Childhood unhappiness and family stressors recalled by adult children of substance abusers. Alcohol Treat. 1991;8:67-80.
63. Lipson M. What do you say to a child with AIDS? Hastings Cent Rep. 1993;23:6-12.
64. Epstein BJ, Little SJ, Richman DD. Drug-resistance among patients recently infected with HIV. N Engl J Med. 2000;347:1889-1890.
65. Gard LH. Patient disclosure of HIV status to parents: clinical considerations. Prof Psychol Res Pract. 1990;21:252-256.
66. Tasker M. How Can I Tell You? Bethesda, MD. Association for the Care of Children's Health; 1992.
67. Wiener L, Figueroa V. Children Speaking with Children and Families About HIV Infection. In: Pizzo P, Wilfert K, eds. Pediatric AIDS: The Challenge of HIV Infection in Infants, Children, and Adolescents, 3rd ed. Baltimore: Williams & Wilkins; 1998:729-758.
68. Brackis-Cott E, Mellins CA, Abrams E et al. Pediatric HIV medication adherence: the views of medical providers from two primary care programs. J Pediatr Health Care. 2003;17:252-260.
69. Frederick T, Thomas P, Mascola L et al. Human immunodeficiency virus-infected adolescents: a descriptive study of older children in New York City, Los Angeles County, Massachusetts and Washington, DC. Pediatr Infect Dis J. 2000;19:551-555.
70. D'Angelo LJ, Abdalian SE, Sarr M et al. The Adolescent Medicine HIV/AIDS Research Network. Disclosure of serostatus by HIV infected youth: the experience of the REACH study. J Adolesc Health. 2001;29S:72-79.
71. Sherman BF, Bonanno GA, Wiener LS, Battles HB. When children tell their friends they have AIDS: possible consequences for psychological well-being and disease progression. Psychosom Med. 2000;62:238-247.
72. The Center for Ethical Practice. Charlottesville, VA; www.centerforethicalpractice.org. Accessed 3/9/07.
73. Wiener L, Lyons M. HIV Disclosure: Who knows? Who needs to know? Clinical and ethical considerations. In: Lyons M, D'Angelo LJ, eds. Teenagers HIV and AIDS. Westport, CT: Praeger Press; 2006;105-106.
74. Wiener L. Helping a parents with HIV tell his or her children. In: Aronstein DM, Thompson BJ, eds. HIV and Social Work: A Practitioner's Guide. Binghamton, NY: Haworth Press; 1998:327-338.