Cystic Fibrosis, part 2 — Implications for School
The management of cystic fibrosis (CF) at school has several facets. Educators
must consider the physical, psychosocial, cognitive, and educational issues
of this diagnosis in order to ensure that the young person with CF is
successful at school.
The physical aspects of CF must be addressed at school.
Often, these students qualify for special education support as students
who are Other Health Impaired (OHI) under the Individuals with Disabilities
Education Act (IDEA). A comprehensive evaluation should be conducted to
see if the student would qualify as a student who is OHI. The following
accommodations and adaptations may be warranted for a child with CF.
- Due to the possibility of fatigue, a child with cystic fibrosis
may need to rest during the school day. It is usually best to do this
in the nurse’s office, or in a location away from the other students
in order to not increase peers’ feelings that the child with CF
is different.
- Coughing is a common part of CF, and the child should have water
and tissues on his/her desk. Coughing is encouraged, to help clear the
mucus out of the child’s lungs. If the coughing is disruptive to
the classroom, the child may be excused for a drink of water.
- Restroom privileges should be flexible and on an “as needed”
basis, as kids with CF may have an urgent need to use the bathroom.
- Due to the child’s productive cough and urgent bathroom
needs, he/she should feel free to leave the classroom when necessary,
to avoid embarrassment over disease symptoms.
- Pancreatic enzymes, to aid in digestion, are taken before every
meal and snack to aid in digestion. These enzymes are not dangerous and
are not addictive to the child with CF.
- Exercise may benefit the child with CF by helping to clear mucus
and increasing lung-muscle strength. The child with CF should be encouraged
to participate in all physical activities at school. From day to day,
the child may be limited in how much he/she can do or the duration of
time that he/she can participate in physical endeavors. The child should
be encouraged to do as much as possible, and allowed to set his/her limits
for physical activity.
- Extra fluid consumption should be encouraged before, during and
after physical activity. During aerobic activity, a child with CF should
drink six to twelve ounces of fluid every 20 – 30 minutes. The added
carbohydrates and salt of sports drinks are a very good alternative for
kids with cystic fibrosis.
Psychosocial concerns for the student with cystic fibrosis may be significant.
Due to frequent absences, frequent infections and limitations on physical
activity, young people with cystic fibrosis struggle with issues of “fitting
in”. They may feel left out by their peers, or struggle with keeping
up socially as they flow in and out of school. In order to help facilitate
healthy psychological, emotional and social adjustment, the school should
consider:
- Educating peers, with the consent of the child and parents, about
cystic fibrosis. The hospital school teacher is a good resource for offering
a presentation, suggesting materials, or assisting with the education
of educators, peers or other interested community members.
- Encourage peers to stay in contact with their friend when he/she
is absent. Cards, letters and phone calls can serve to bridge the gap
when youngsters with chronic illnesses must be away from school and activities.
- This is a wonderful opportunity to teach peers about supporting
a friend, showing
compassion, and other essential life lessons.
- Identify strong peers to mentor the student with cystic fibrosis
when he/she returns after an absence. Having someone to “fill you
in” on what you missed while hospitalized or home ill may make all
the difference in facilitating a good reentry.
- Help the student find areas of expertise and ways to excel in
the school environment. Mentoring support could be included in the IEP
to help the young person maintain or develop a strong self-concept.
- Include social work or counseling services as part of the IEP.
Having someone at school to talk to or act as an advocate for the youngster can be a significant asset. The student may need
the opportunity to discuss his/her fears about the future, keeping up
in school, socialization issues, concerns about other family members,
etc.
Finally, cognitive status and academic progress must be monitored on
an on-going basis for the student. Children
with cystic fibrosis do not have any cognitive or learning problems as
a result of the diagnosis or treatment. However, they may miss a lot of
school, and need assistance and flexibility in completing assignments
and work upon their return to school or home. Homebound education should
be utilized
ONLY if the child cannot possibly come to school. Otherwise,
the child should be encouraged to attend school as much as possible. Doctors
visits, home administration of IV antibiotics and other medical requirements
may result in excessive absences for the student with cystic fibrosis.
This may cause the child to feel concerned about keeping up academically.
In order to ensure that the student with cystic fibrosis continues to
progress, educators should:
- Evaluate for potential classification as other health impaired.
- Create an IEP that allows for the possibility of on-going change
and fluctuation in ability and physical stamina.
- Provide for a great deal of flexibility when the child has been
absent. Give plenty of time to complete make-up work.
- Provide tutorial assistance if the student has been absent or
if he/she is having
difficulty with specific learning material.
- Provide careful monitoring to determine if the student shows a decline
in performance.
CF, Part 2 — Implications for School
For more information, please contact:
Kathy Davis, MSEd, PhD
kdavis2@kumc.edu
(913) 588-6305