When the Time Comes To Talk About HIV: Factors Associated With Diagnostic Disclosure and Emotional Distress in HIV-Infected Children *Patricia Lester, †Margaret Chesney, ‡Molly Cooke, §Robert Weiss, ¶Patrick Whalley, **Berenice Perez, ††David Glidden, §§Ann Petru, ¶¶Alejandro Dorenbaum, and ¶¶Diane Wara *Center for Community Health, Department of Psychiatry, University of California, Los Angeles; †Center for AIDS Prevention Studies, University of California, San Francisco (UCSF); ‡Department of Internal Medicine, UCSF; §Department of Biostatistics, UCLA School of Public Health; ¶Adolescent HIV/AIDS San Francisco Tenderloin Clinic, San Francisco, California; ††Department of Epidemiology and Biostatistics, School of Medicine, UCSF; §§Pediatric Infectious Disease Department, Children’s Hospital and Research Center at Oakland, California; ¶¶Department of Pediatrics, UCSF, California, U.S.A. Objective: To determine factors related to the timing and probability of nondisclo- sure of HIV status to perinatally HIV-infected children, and to explore factors asso- ciated with emotional distress in HIV-infected children. Methods: This is a cross-sectional study of 51 HIV-infected children based on medical records, parent interviews, and child assessments. Results: 1) Probability of earlier age of disclosure is associated with higher child IQ (p  .04) and more family expressiveness (p  .01); 2) controlling for child age, disclosure status at time of study is associated with major life events, but not with medical status; and 3) factors associated with increased parent-rated anxiety in HIV- infected children in univariate analyses are: HIV disclosure (p  .04), other major life events (p  .001), higher medication dose frequency (p  .01), and child age (p  .01). Increased depression is associated only with more medication doses (p  .02). Conclusion: These data indicate that higher child IQ and greater family expres- siveness increase the probability of earlier diagnostic disclosure to HIV-infected chil- dren. Factors associated with emotional distress highlight important areas of clinical attention. These data suggest that diagnostic disclosure may not necessarily minimize emotional distress, indicating the need for further evaluation of the appropriate timing and type of disclosure for pediatric HIV. Key Words: Pediatric HIV—Anxiety— Diagnostic disclosure. The second decade of the AIDS epidemic brought more effective therapeutics to children affected by HIV, resulting in an increasing population of children and families living with HIV as a chronic illness (1). The Centers for Disease Control and Prevention (CDC) esti- mates that nationally there are 8596 cases of AIDS among children under the age of 13, and 3564 cases among children aged 13 to 19 years (2). What and when to tell children about their HIV infection presents a chal- lenging dilemma in the setting of longer life spans, a less symptomatic early course, and the need for multiple medications and close medical monitoring (3). Recent recommendations from the American Academy of Pedi- atrics have “strongly encouraged” illness disclosure to school-aged children but did not address the timing and Supported by AIDS Clinical Research Center Grant #CC95-SF-193, Department of Psychiatry, UCSF, and in part by NIH grant M01 RR01271, Pediatric Clinical Research Center. Address correspondence and reprint requests to Patricia Lester, MD, Center for Community Health, 10920 Wilshire Blvd., Suite 350, Los Angeles, California 90024-1759, U.S.A.; e-mail: plester@ mednet.ucla.edu Manuscript received October 29, 2001; accepted July 2, 2002. JAIDS Journal of Acquired Immune Deficiency Syndromes 31:309–317 © 2002 Lippincott Williams & Wilkins, Inc., Philadelphia 309