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Complex Issue of HIV Disclosure To Children and Adolescents in the Forefront

February 5, 1999

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!


A Summary of the Recommendations on Disclosure of Diagnosis to Children and Adolescents Living with HIV Infection from the American Academy of Pediatrics

The January 1999 issue of Pediatrics published recommendations from The American Academy of Pediatrics Committee on Pediatric AIDS regarding HIV disclosure to children and adolescents. The Committee began by noting the increased longevity rapidly becoming the norm among pediatric patients with HIV infection. They quote statistical data placing the median survival age between 8 and 13 years for children with perinatally acquired HIV infection. Thus, the Committee states, "A disclosure of diagnosis of HIV infection/AIDS to a child is becoming an increasingly common clinical issue." The Committee cites research from pediatric oncology and pediatric HIV/AIDS indicating children who are informed about their diagnosis have better coping and higher self-esteem and parents who disclose HIV status to their children express less depression than parents who do not disclose.

The Committee encourages disclosure stating that for each child or adolescent, the particulars of disclosure should take into consideration, age, psychosocial maturity, complexity of family dynamics, and clinical issues. For younger children, the Committee recommends simple explanations about illness and what to do to stay healthy. As children mature, the Committee recommends that they be fully informed about their diagnosis and prognosis. Adolescents should be informed so that they can assist in their care and reduce the risk of HIV transmission through unprotected sex. While the Committee advocates disclosure to all children, an exception is noted in the case of critically ill children when issues related to death and dying may be more appropriate to address than issues of disclosure.

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The Committee acknowledges many obstacles that inhibit disclosure to children including negative impact on the child's will to live, parental guilt about transmitting infection, fears about stigmatization or discrimination, child's difficulty keeping a secret, and parent's denial of or difficulty confronting their own illness. The Committee acknowledges that parents may initially be reluctant to disclose HIV diagnosis to their children. However, they warn against accepting a parent's or guardian's request to withhold HIV diagnosis under all circumstances. Practitioners are encouraged to inform families that if older children ask direct questions about HIV status, they will answer those questions truthfully. The Committee specifies that ongoing counseling is necessary throughout the child's illness to help parents understand the importance of disclosure. Ideally, disclosure takes place in a supportive environment with collaboration and cooperation among parents and providers.

The Committee provides a series of recommendations for disclosure of HIV status to children and adolescents. These include ongoing counseling about disclosure for parents; individualizing disclosure based on the child's age, maturity, clinical and social circumstances; and facilitating the child's or adolescent's coping with their illness.


A Provider Commentary from Sandra Y. Lewis, Psy.D., Psychologist, National Pediatric and Family HIV Resource Center

The Committee's recommendations acknowledge that HIV disclosure is a process rather than an acute event that begins and ends with telling the child or adolescent the diagnosis. The complexity of issues surrounding disclosure mandate that families have time and opportunities for discussion of issues such as preparing the child, finding the right words to say, deciding whom to tell and when to tell them, and defining and considering how to manage any risks. The Committee noted several obstacles to disclosure for families living with HIV/AIDS. In addition to the obstacles noted by the Committee, the multigenerational nature of pediatric HIV infection further complicates the process of HIV disclosure to children. Many parents fear children will have questions about transmission including inquiring about parental sexual behavior, parental drug use, and death. They feel unprepared to address such questions and may benefit from the experience of other parents who have disclosed diagnosis to children.

A multisystems approach to disclosure can help families assess the various systems which impact their lives so that they can identify obstacles and locate sources of support. Multisystems levels include, the individual child, the parent child relationship, siblings, extended family and non-blood kin, relationships with health and mental health providers, schools, community, church, child welfare, legal services, and other social systems. Providers can assist families in identifying concerns, needs, and strengths of the child, risks related to stigma and discrimination within the school or community, supports within the family, at school, and within the community, health and mental health resources, and legal resources. In reviewing the various systems, here are some key questions to facilitate the counseling process with families. What are the concerns regarding the child's age, will to live, or ability to understand? What supports can be put in place for the child? Will siblings be told simultaneously? Does the school nurse, principal, or other personnel know the child's diagnosis? Is so, can they be identified for the child as a source of support after HIV disclosure? What supports are available among family, close friends, church members or community? What support is available among providers involved with the family? Who are some other families who've disclosed and may provide peer support?

Disclosure of HIV diagnosis to children and adolescents is a well-known psychosocial issue yet, a very individual process. As families and providers move through the process of disclosure, they will ask many questions and weigh various options. The exact time, content, and circumstances of each disclosure will be a product of numerous and unique considerations.


Resources and Information from the National Pediatric and Family HIV Resource Center

Families and providers may want to learn more about disclosure issues. The National Pediatric and Family HIV Resource Center (NPHRC) offers providers additional resources to support the process of HIV disclosure to children and adolescents. The following books, videotapes, and articles have helped families and professionals with the process of disclosure.


Jimmy and the Eggs Virus

  • For younger children.

  • Explains the AIDS virus through a story.

  • Can be read by parents to children to aid their discussion of HIV.

  • Available from NPHRC. Click here for ordering information.


How Can I Tell You by Mary Tasker, MSW

  • Offers case examples of families' disclosure process.

  • Describes stages families progress through in the process of disclosure.

  • Helps providers assess where a family may be in the process of disclosure.


What's Best for You: Families Living with HIV Talk About Disclosure

  • A videotape depicting families and children discussing their experience with disclosure.

  • Provides a personal view of the HIV disclosure process for parents and children.

  • Depicts a range of experiences from unplanned to planned disclosure.

  • Depicts the role of different systems (e.g., counselors, school nurses, support groups, peers) in the process of disclosure. Available from NPHRC. To see a short clip and/or order the video, click here.


Other Articles

  • Funck-Brentano, 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. Arch Pediatr Adolesc Med 151: 978-985. Available at archpedi.ama-assn.org.

  • Grubman, S., Gross, E., Lerner-Weiss, N., et al. (1995). Older children and adolescents living with perinatally acquired human immunodeficiency virus infection. Pediatrics, 95, 657-663.

  • Ledlie, S. (1999). Diagnosis disclosure by family caregivers to children who have perinatally acquired HIV disease: When the time comes. Nursing Research, 48,3:141-49.

  • Lewis, S, Haiken, H, Hoyt, L. (1994). Living beyond the odds: Long-term survivors of pediatric HIV infection. Supplement, Journal of Developmental and Behavioral Pediatrics, 15, S12-S17.

  • Lipson, M. (1993). What do you say to a child with AIDS? Hastings Center Report, 23, 6-12.

  • Lipson, M. (1994). Disclosure of diagnosis to children with human immunodeficiency virus or acquired immunodeficiency syndrome. Supplement, Journal of Developmental and Behavioral Pediatrics, 15, S61-65.

  • Riekert, K., Wiener, L., Battles, H. (1999) Prediction of Psychological Distress in School-Age Children with HIV. Children's Health Care, 28(3):201-220.

  • Wiener, L., Battles, H., Heilman, N. (1998) Factors associated with parents' decision to disclose their HIV diagnosis to their children. Child Welfare LXXVII:2. 115-135.

  • Weiner, L, Theut, S, Steinberg, SM, Riekert, KA, Pizzo, PA. (1994). The HIV-infected child: Parental responses and psychosocial implications. American Journal of Orthopsychiatry, 64, 485-492.

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!



  
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