September 1997
BOSTON — In the early years of the AIDS epidemic, children diagnosed with HIV were forced to leave schools and receive home-based schooling. Today, however, children with the virus are attending the nation’s public and private schools in larger numbers, confronting educators, administrators and nursing staff with a whole new set of health, education and social issues.
The Centers for Disease Control and Prevention (CDC) estimate that about 12,240 children presently living with HIV in this country have an average life expectancy of about 9.4 years. The issues confronting these students, as well as their educators, are school attendance, the necessity of disclosing a child’s HIV status and who should be privy to that disclosure and the use of combination therapies during school hours.
Although studies have already documented the academic, behavioral and psychological issues confronting a child with HIV, several research doctors from the Massachusetts Department of Public Health and the CDC decided to study the average schoolday experience of a positive child.
The researchers’ interest in developing the study was whether the children knew of their HIV status, the number of absentee days they experienced and whether school officials were aware of the children’s infection. However, the study relied on information from HIV clinic nurses and not on interviews with school officials, parents or the children. The study was also unable to compare the child’s absenteeism and school performance with those students who are uninfected.
Of the 92 children used in the study, all were surveyed at clinics where they received their medical care. The median age of the children was 8 years. Thirty-nine percent of the children were African-American, 33% were white and 28% were Latino. Fifty-four percent were boys and 46% were girls. More than half the children lived with their biological parents and almost 83% attended public school. Though a small number came from the state’s social services, the majority of the children came from stable home environments.
The study found most of the elementary-age school children to be taking some type of antiretroviral medication, but only a small percentage taking their drug therapies during school hours. Some opted to have the school nurse administer medications, while students 13 years and older were mostly self-administered, the study indicated.
The administration of medications in school was a strong predictor of whether the school was informed of the child’s condition. Families who chose not to inform the school had to arrange complex medication schedules for their children. One family removed their child from school because a teacher questioned the child about his illness, but neither the child nor the school knew of the HIV diagnosis at the time.
"Disclosure that their child has AIDS can have a double significance," said Alfred DeMaria, MD, clinical health investigator for the Massachusetts Department of Public Health. "Because revealing their child’s HIV status can also indirectly reveal their status to school officials, as well."
Depending on the severity of the child’s HIV status, school attendance appeared to be a consistent problem for some, researchers said.
Close to half the children missed two weeks of schooling because of HIV-related illnesses and more than 12% were found to have missed more than eight weeks. Twenty-three children were found to have been hospitalized a total of 44 times during the normal school year, with a range of one to five hospitalizations per child. The hospital stays were for one week or less, the researchers said.
One of the most difficult decisions for parents is when to tell the child he or she has HIV. The researchers found that by the age of 10, over half the children in the study had been informed. Also, the severity of the infected children’s condition did not alter whether or not they were told about their HIV status.
The study also found no difference between the children living with biological parents and children living with other primary caregivers as to when they were told they were HIV-positive. Among those who were told, the study indicated the news was usually broken by either immediate family members (59%), a family member together with a doctor (24%) or by a doctor alone at the request of the family (16%).
Close to half of the families had informed someone in the school of their child’s HIV infection. Medical and social services from the child’s HIV clinic assisted in informing school personnel in 26% of the cases. Although more than one school official was usually informed, the decision about who should be informed first was almost always made by families. School nurses, principals and classroom teachers were the most likely to be informed by families, researchers said.
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The study indicates that support from health care providers may increase the family’s ability to talk openly about the child’s illness. However, difficulty in maintaining confidentiality when the family had not disclosed the child’s HIV status was a recurrent theme reported by many of the health clinic nurses.
The findings that only 3% of school-age children with HIV were unable to attend classes and that most were enrolled in public schools indicates that the public school systems are bearing the major responsibilities for educating HIV-infected students. In fact, a recent survey of the largest school districts in the country showed that school systems have begun to formulate policies that respect the privacy of the family while not compromising the child’s education. But the researchers stress that communication between health care providers and the school personnel is essential for meeting both the medical and educational needs of the HIV-infected child.
"This is a very valuable study for schools nationwide," said Joyce Cohen, PhD, of the Massachusetts Working Group on Surveillance of HIV in Children. "Massachusetts is just a small microcosm of what is happening to schoolchildren with HIV in other states. It’s an issue that will only get bigger as the children continue mainstreaming into schools."
For more information:
- Cohen J, DeMaria A. School-related issues among HIV-infected children. Pediatric1997; 100:126-130.
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