ELK GROVE, Ill. - Physicians and parents should be aware of the impact a terminal illness, such as AIDS, can have on a child and should plan for the future, according to a new statement by the American Academy of Pediatrics (AAP).
Thanks to the ACT076 protocol, which calls for zidovudine prophylaxis during pregnancy and immediately following birth, an increasing number of healthy, HIV-negative children are being born to HIV-positive mothers. However, the children's high level of health does not diminish their need for care. Legal plans for a child's well being must be made by the parent to ensure a stable future for the child.
"While children born of HIV-positive mothers may not be infected, they are still affected," said Patricia N. Whitley-Williams, MD, of the Robert Wood Johnson Pediatric AIDS Program in New Brunswick, N.J.
Counseling for the parent is provided by many facilities that care for pediatric HIV patients. The counseling is a multi-discipline approach, which includes physicians, nurses, child-life therapists, behaviorists and psychiatrists, and helps the parent better understand the importance of establishing a new environment for the child.
Pediatricians should be sensitive when they approach families about planning, the AAP recommended and refer them to the appropriate community social service agencies. If the physician is unaware of any such agencies, the parents should be advised to contact the Pediatric AIDS Foundation or the HIV Resource Center.
Pediatricians are also urged to petition state and local child welfare agencies for policies that encourage temporary placement or "respite care" of children throughout the illness, returning them once the parent recovers enough to reassume responsibility. Stand-by guardianship, already in effect in California, Florida, Illinois, New Jersey, New York and North Carolina, is also a temporary transferal of custody. This law enables the ill parent to decide when and to whom guardianship of the child will be transferred, and it should prove useful to numerous families, according to the statement.
The AAP also recommended that pediatricians support the development of state-funded relief plans, as well as emotional and financial support for the children and their adoptive families. These plans would lend not only monetary support to those who care for the children but also medical and psychological care and legal services.
For more information:
- AAP. Planning for children whose parents are dying of HIV/AIDS. American Academy of Pediatrics Committee on Pediatric AIDS. Pediatrics.1999;103(2):509-511.
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