PEDIATRICS Vol. 100 No. 1 July 1997,
p. e8
Copyright ©1997 by the American Academy of Pediatrics
ELECTRONIC ARTICLE:
School-related Issues Among HIV-Infected Children
Joyce Cohen*,
Catherine Reddington*,
Dawn Jacobs
,
Regina Meade§,
Donna Picard¶,
Kathy Singleton
,
Dorothy Smith#,
M. Blake Caldwell**,
Alfred DeMaria*,
Ho-Wen Hsu*,
the Massachusetts Working Group on Surveillance of
HIV in Children,
Massachusetts Department of Public Health, and
the Centers for Disease Control and
Prevention
From the * Massachusetts Department of Public Health, Jamaica
Plain, Massachusetts; the Children's Hospital, Boston,
Massachusetts; the § Boston City Hospital, Boston, Massachusetts; the
¶ Greater Lawrence Family Health Center, Lawrence, Massachusetts; the
Baystate Medical Center, Springfield, Massachusetts; the # University
of Massachusetts Medical Center, Worcester, Massachusetts; and the
** Division of HIV/AIDS Prevention, Centers for Disease Control and
Prevention, Atlanta, Georgia.
ABSTRACT
- INTRODUCTION
- METHODS
- RESULTS
- DISCUSSION
- ACKNOWLEDGMENTS
- ABBREVIATIONS
- REFERENCES
ABSTRACT 
Objective. Many children with human
immunodeficiency virus (HIV) infection are surviving long enough to
reach school age. This study describes issues related to school
attendance and disclosure of HIV infection in a population of
HIV-infected children.
Methods. A statewide pediatric HIV surveillance system was
used to collect data on school-age (
5 years old) HIV-infected children. In addition, HIV clinic nurses familiar with the child's history participated in a cross-sectional survey that collected information on school-related issues during the 1993-1994 school year.
Results. Of the 92 school-age children, only 3 were too
ill to attend school. Another 5 children were home-schooled. Of the 84 who attended school outside the home, 25% had severe symptoms of HIV
infection (Centers for Disease Control and Prevention [CDC] clinical
category C). Absence from school ranged from less than 2 weeks during
the year for half of the children (51%) to more than 8 weeks for 9 children (12%). Twenty-nine percent of the children received
medication in school, usually administered by the school nurse. Over
two thirds of the 50 children ages 5 to 10 years had not been told that
they had HIV infection. Only 1 of the 20 children more than 10 years of
age was not aware of her HIV infection. For 53% of the children
attending school, no school personnel had been informed of the child's
HIV infection. Administration of HIV medications at school, age of
child, and treatment at one particular HIV clinic were associated with
the parents' decision to inform school personnel. In the 47% of cases where the school had been informed, school nurses were most frequently notified, followed by principals and teachers.
Conclusion. Only 3% of school-age children were too ill
to attend school, and almost all were enrolled in public schools. The
number of HIV-infected children reaching school age will continue to
grow, and public schools will bear the responsibility for educating these children. Health care providers will increasingly be called upon
for guidance by both educators and families to assure that HIV-infected
children receive the best education possible.
Key words:
HIV,
AIDS,
school issues,
confidentiality.
INTRODUCTION
Children with human immunodeficiency virus (HIV) infection
have been attending our nation's schools in increasing numbers for
over a decade. The estimated number of HIV-infected children living in
the United States in early 1994 was 12 240, and 39% (4820) of those
children were age 5 or older.1 An estimated 1630 HIV-infected children were born in 1993 alone and these children have a
median life expectancy of 9.4 years2; thus, many more HIV-infected children can be expected to enter and remain in school in
years to come. As more children with HIV infection survive long enough
to enter school, families and schools are faced with a number of
complex medical and social issues.3 These issues include
the impact of illness on school attendance, disclosure of HIV infection
status, confidentiality surrounding disclosure, and medication use
during school hours.
In the early years of the acquired immunodeficiency syndrome (AIDS)
epidemic in this country, children identified with HIV infection were
sometimes forced to leave their schools.7 In August 1985, the Centers for Disease Control and Prevention (CDC) first released
guidelines regarding school placement of HIV-infected children.8 In March 1986, the American Academy of
Pediatrics (AAP) issued similar guidelines,9 encouraging
school attendance for most children with HIV infection. In some areas
of the country, school system policies require that schools be informed
about the attendance of an HIV-infected child.10 The
Massachusetts policy, in keeping with state law regarding the
confidentiality of medical information, leaves the decision to inform
school personnel of a child's HIV infection to the parents or
guardians of each child.11
Although increasing numbers of school-age children with HIV infection
are attending school, little has been written about their experiences.
Previous studies of school-related issues among HIV-infected children
have addressed placement in public schools;12 academic,
behavioral, and psychological issues of HIV-infected children with
hemophilia;13,14 prenatal drug exposure;5 and
special service needs.6 We undertook this survey to
describe the experiences of children with HIV infection in schools
across Massachusetts. We examined whether the children had been told about their HIV infection status and whether schools knew of their infection. We also describe school absences due to HIV-related illnesses.
METHODS
The Pediatric Spectrum of Disease (PSD) study is a multicenter
active surveillance study of pediatric HIV infection coordinated by the
CDC. In Massachusetts, the PSD study is based at the State Public
Health Department. Data collection began in 1989 and all children born
after January 1, 1977 who were known to be HIV-infected or were born to
HIV-infected mothers were eligible for inclusion.
Children were identified through HIV clinics at each hospital site.
Study nurses at each site abstracted all available medical records at
initial enrollment and provided updates at 6-month intervals. The
information collected on each child included demographic and social
characteristics, mode of HIV exposure, clinical symptoms, HIV-related
treatment, and laboratory data. Patient confidentiality was protected
by identifying children only through an alphanumeric code. Data forms
containing only the patient codes were sent to the PSD study for data
entry. Data were collected at seven medical centers that included all
pediatric HIV clinics in the state. Yearly surveys of all pediatric
care providers in the state were performed to validate that virtually
all known HIV-infected children were seen at these medical centers.
The study population consisted of HIV-infected children enrolled in the
PSD study who were born before 1989 and were still alive and being
monitored in 1993. In addition to demographic and clinical information
routinely collected by the PSD study, specific information about the
1993-1994 school year
including each child's type of school and
grade, absences, medications, and whether the child and school were
told about the child's HIV infectionwas collected on standard forms
after the end of the school year. This information was obtained by PSD
study nurses who also provided HIV care to the children and were
informed about school issues by parents. Data on clinical stage of
disease and laboratory values reflected the child's status as of
January 1994.
Differences between categorical variables were compared by the
2 test. Logistic regression was performed using SAS
(SAS Institute, Inc, Cary, NC) version 6.08.
RESULTS
Patient Population
Of the 100 eligible children, 97 had surveys completed by nurses
at the five clinics where these children receive medical care. Of
these, 5 children born in 1988 had not yet started kindergarten in 1993 and were excluded from the analysis. (One clinic caring for only 2 school-aged children was grouped with another nearby clinic.)
Demographic characteristics for the 92 school-age children are shown in
Table 1. The overall mean age of the children was 8.5 years (median 8, range 5 to 17). The mean age of the 77 children with
perinatally acquired infection was 7.5 years (median 7, range 5 to 15),
compared with a mean age of 13 years (median 13, range 10 to 17) for
the 15 children with hemophilia-related or transfusion-acquired infection. Thirty-nine percent of the children were black, 33% were
white, and 28% were Hispanic; 54% were male and 46% were female.
More than half of the children (58%) lived with a biological parent,
and most (83%) attended public school. Eight children were excluded
from analysis of school-related issues because they either received
home-based schooling (n = 5) or were considered by their parents
to be too ill to attend school (n = 3).
|
Table 1.
Demographic Characteristics of HIV-Infected School-age Children in
Massachusetts, 1993-1994
[View Table]
|
Clinical Status
Fig 1 shows the CDC clinical stage of
illness15 for children attending school during the
1993-1994 school year. Twenty-five percent had severe symptoms of HIV
infection (category C), 55% had moderate symptoms (category B), and
only 20% had mild or no symptoms (category N or A). Twenty-nine
percent of the children had CD4 T-lymphocyte counts of 200 or less,
34% between 201 and 500, and 38% over 500. Thirty-three (39%) of the
children had been diagnosed with at least one AIDS-defining condition.
Four children attending school had gastrostomy tubes for nutritional supplementation. Three (4%) of the children attending school died during the school year.
Fig. 1.
Clinical severity of HIV infection among children attending school,
Massachusetts, 1993-1994.
[View Larger Version of this Image (37K GIF file)]
School-related Issues
Table 2 shows school-related information for the 84 children who attended school outside the home. Most of the children
were in elementary school (grades kindergarten through 5). Six percent of the children received some tutoring during the school year. Ninety-seven percent of the children were taking antiretroviral medication; however, only 29% of the children received medications while in school (Table 2). Of these, 74% had their medication administered by the school nurse. All children who self-administered their medication were in grade 8 or above.
|
Table 2.
School-related Issues Among HIV-Infected Children in Massachusetts,
1993-1994
[View Table]
|
Forty-nine percent of children missed 2 or more weeks of school, and
12% missed more than 8 weeks. Five children had absences related to
nonmedical issues as well as HIV: 3 missed school because of their
mother's illness, and 2 because of social issues not related to HIV.
Of the children with mild symptoms, 75% were absent for less than 2 weeks, compared with 51% of children with moderate symptoms and 27%
of children with severe symptoms (P < .01).
Twenty-three children (27%) were hospitalized a total of 44 times
during the school year (September through June) with a range of 1 to 5 hospitalizations per child. The mean number of hospital days per child
was 5.5. Seventy-four percent of the hospitalizations were for stays of 1 week or less.
Disclosure of HIV Infection to the Child and School
Thirty-seven children (42%) had been told that they had HIV
infection. The average age at disclosure was 8 years. Fig 2
shows the proportions who had been told of their HIV infection by age. Over two-thirds of children ages 5 through 10 years had not been told
that they had HIV infection, whereas only 1 of the 20 children over age
10 years did not know, a 14-year-old girl who was described as being
cognitively limited. Clinical severity of the child's symptoms was not
associated with whether or not the child was told of his/her disease
status. Forty-eight percent of children with severe symptoms had been
told compared with 39% of children with mild to moderate symptoms.
There was also no difference between children living with biological
parents (39% informed) and children living with other primary
caregivers (45% informed). Among the children who had been told,
initial disclosure was most often done by family members alone (59%),
by a family member together with medical staff (24%), or by medical
staff alone (16%) at the request of the family.
Fig. 2.
Proportion of school-age children who had been told of their HIV
infection, Massachusetts, 1993-1994.
[View Larger Version of this Image (42K GIF file)]
Forty-seven percent of the families had informed someone in the school
of their child's HIV infection. In 26% of cases where the school was
informed, medical and/or social service staff from the HIV clinic had
assisted the family in informing and educating school personnel.
Although more than one school official was frequently informed, the
decision regarding who to inform was made by the family. School nurses,
principals, and classroom teachers, in that order, were the most likely
to be informed by families (88%, 62%, and 47%, respectively).
We next examined whether any demographic or clinical factors were
associated with families choosing to inform the school about their
child's HIV infection. Schools were more likely to be informed about
children who were 9 years old, took medication at school, and were
cared for at clinic C (Table 3). In a multiple logistic regression model, only medication taken during school and treatment at
HIV clinic C remained independently associated with informing school
personnel. Ninety-one percent of the children at clinic C had informed
someone in their school, compared with 15% to 51% at the other clinic
sites. In addition, 64% of children seen at clinic C knew their HIV
status, compared with 20% to 40% of children at other sites.
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Table 3.
Factors Associated With Informing School Personnel of Child's HIV
Infection, Massachusetts, 1993-1994
[View Table]
|
For some of the children in our study, only the school or the child
(but not both) knew of the child's HIV infection. Thirteen children
(18%) had not been told that they were infected, but school personnel
had been informed. Conversely, 10 children (14%) knew they were
infected, but their families had not informed the school.
DISCUSSION
This study of a population-based sample of school-age children
focuses on disclosure of the child's HIV status to the child and to
school personnel. One of the most difficult issues for parents is
deciding when and how to tell HIV-infected children about their
diagnosis. We found that by age 10, over half of our children had been
informed, similar to the findings of Grubman et al16
in their cohort of older children. Our study also included younger
school-age children, most of whom had not been told that they were
HIV-infected. Although young children with cancer are now commonly told
their diagnosis when treatment for their disease is begun, the social
issues surrounding a diagnosis of HIV infection make disclosure a much
more complex issue.17
Disclosure may often be contemplated by parents or guardians, but many
feel unprepared to face the sensitive questions that may arise
following disclosure. Many children already know or suspect their
diagnosis even if no one has actually discussed it with
them.18 Parents often turn to medical personnel for guidance and support on this issue. In over one third of our families whose children had been told that they had HIV infection, a member of
the health care team had been present when the child was first informed. Although the questions of when and how best to inform a child
remain unanswered, there is general agreement that children of normal
cognitive development can benefit from the opportunity to openly
discuss their illness with adults whom they trust.19
The decision to inform school personnel of a child's HIV infection is
associated with tremendous anxiety for the family, who needs to weigh
the potential benefits of disclosure with the fear of discrimination or
loss of privacy. Several families were influenced by publicized reports
of how their school system or community had responded to previous
disclosures about HIV-infected students. Because medical management of
this disease plays such a large part in an HIV-infected child's life,
confidentiality becomes increasingly difficult to maintain as the
disease progresses. The administration of medications in school was a
strong predictor of whether the school was informed of the diagnosis.
Families who choose not to inform the school may have to arrange
complex medication schedules to avoid administration during school
hours. One older child in our study took his medication in the school bathroom to avoid having to inform the school nurse.
The other key predictor of whether families chose to inform the school
was treatment at a particular HIV clinic, possibly indicating the
influence of medical personnel on the family's decision. Wiener and
Septimus20 have outlined the many ways in which the health
care team can be helpful to families in their interactions with the
school system. The staff at HIV clinic C actively encourages families
to inform the school, often accompanying the parents to meetings with
school personnel. Support from health care providers may increase the
family's ability to talk openly about their child's illness. Close
communication between the health care team and school personnel can
also help to address concerns the school may have about the care of
these children. All of our HIV clinics reported that the continued
contact they had with the schools revolved around medical issues,
including immunizations, medications, absences, illnesses, and
participation in school activities.
The difficulty of maintaining confidentiality when the family had not
disclosed the child's HIV status to the school was a recurrent theme
reported by many of the HIV clinic nurses. Children may be faced with
questions from school personnel and classmates because of repeated
absences and hospitalization. School personnel may suspect or assume
the diagnoses even if they have not been officially informed. When a
child whose HIV infection was not known to the school had medical
problems that necessitated communication between the school and the
clinic, medical personnel were required to avoid specific mention of
HIV. A child's schooling can also be disrupted when a family does not
feel comfortable about informing the school of the child's infection.
One family removed their child from a school because the teacher
questioned the child about his illness. Neither the child nor the
school knew of the HIV diagnosis at that time.
A major limitation of our study was that we received information from
HIV clinic nurses instead of from direct interviews of the parents,
children, or school officials. We also were unable to compare
children's school absences and grade performance with those of
uninfected children living in similar environments. Further research is
needed to study the complex social support needs of the HIV-infected
child as well as the support that school personnel may need when a
student is identified as HIV-infected. A better understanding of the
impact of the illness and death of HIV-infected children on their
classmates is also of interest.
The findings that only 3% of school-age HIV-infected children were too
ill to attend school and that most were enrolled in public schools
indicates that public school systems are bearing the major
responsibility for educating HIV-infected children. A recent survey of
the largest school districts in the country shows that school systems
have in fact begun to formulate policies that respect the privacy of
the family while not compromising the child's
education.21,22
Although the decision to inform the school about a child's HIV
infection rests with the family in most cases, the health care team can
be instrumental in assisting the family in making their decision and
serving as an advocate for the child in the educational system. Health
care providers should offer guidance to school personnel regarding the
medical issues that may arise for the HIV-infected child while under
their supervision. Communication between health care providers and
school personnel is essential for meeting both the medical and
educational needs of the HIV-infected child.
FOOTNOTES
Received for publication Nov 7, 1996; accepted Jan 22, 1997.
Reprint requests to (J.C.) Massachusetts Department of Public
Health, State Lab Institute, 305 South Street-5th Floor, Jamaica
Plain, MA 02130.
ACKNOWLEDGMENTS
This research was supported by contract U64/CCU101187 from the
Division of HIV/AIDS at the US Centers for Disease Control and
Prevention.
We thank Jeanne Bertolli for her support and helpful discussion.
Members of the Massachusetts Working Group on Surveillance of HIV in
Children: Baystate Medical Center, Barbara Stechenberg, MD; Boston
Children's Hospital, Kenneth McIntosh, MD; Boston City Hospital,
Stephen Pelton, MD; Massachusetts Department of Social Services,
Suzanne Tobin, RN; Massachusetts General Hospital, Mark Pasternack, MD;
New England Medical Center, Cody Meissner, MD; and University of
Massachusetts Medical Center, John Sullivan, MD.
ABBREVIATIONS
HIV, human immunodeficiency virus.
AIDS, acquired
immunodeficiency virus.
CDC, Centers for Disease Control and
Prevention.
AAP, American Academy of Pediatrics.
PSD, Pediatric
Spectrum of Disease (study).
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