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 might be warranted for a child with CF.

  • Due to the possibility of fatigue, a child with cystic fibrosis might need to rest during the school day. This should be done in the nurse's office or another location away from the other students. It is important to avoid increasing peers' feelings that the child with CF is somehow different or getting special attention.
  • Coughing is a common part of CF, and the child should have water and tissues readily available. Coughing is encouraged and necessary to clear the mucus out of the lungs. If the coughing is disruptive to the classroom, the child should be excused for a drink of water.
  • Restroom privileges should be flexible provided when needed.
  • Due to the productive cough and urgent bathroom needs, the child should feel free to leave the classroom when necessary, to avoid unnecessary embarrassment over disease symptoms.
  • Pancreatic enzymes, which aid in digestion, are needed before every meal and snack. Just to be clear, these enzymes are not dangerous and are not addictive.
  • Exercise can provide great benefit Kids at school. to the child with CF by helping to clear mucus and increasing the strength of the respiratory muscles. The child with CF should be encouraged to participate in all physical activities at school. At times, child might encounter limitations in strength or endurance. Nevertheless, the child needs to be encouraged to participate as much as possible, but should be allowed to set individual limits on total physical exertion. When questions arise, please contact the child's parents or healthcare provider.
  • Extra fluid consumption should be encouraged before, during and after physical activity. During aerobic activity, a child with CF should drink between six and twelve ounces of fluid every 20 to 30 minutes. Because of the added carbohydrates and salt, sports drinks provide an excellent choice for kids with cystic fibrosis.

Psychosocial concerns for the student with cystic fibrosis can be significant. Due to frequent absences, frequent infections and limitations on physical activity, young people with cystic fibrosis often struggle with issues of "fitting in". They may feel left out by their peers, and struggle with keeping up socially as they flow in and out of school. In order to encourage healthy psychological, emotional and social adjustment, the school should consider:

  • With the consent of the child and parents, educate peers 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.
  • Students in class.
  • Encourage peers to stay in contact with their friend during absences. Cards, letters and phone calls can serve to bridge the gap when students must be away from school and activities.
  • Seize this wonderful opportunity to teach peers about supporting a friend, showing compassion and other essential life lessons.
  • Identify strong peers to mentor the student upon returning to school. Many students say that having someone fill you in on what you missed while away can make all the difference in smoothing the re-entry to school.
  • 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 self-confidence.
  • Include social work or counseling services as an integral 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 might need the opportunity to discuss fears about the future, worries about keeping up with schoolwork, socialization issues, or concerns about other family members.

Finally, cognitive status and academic progress must be monitored on an ongoing basis for the student. Children with cystic fibrosis do not have any cognitive or learning difficulties as a result of the diagnosis or treatment. However, they likely will miss a lot of school, and therefore will need assistance and flexibility in completing assignments and work upon their return. As much as possible, the student should be encouraged to attend school. Homebound education is an option, but it should be used as a last resort — ONLY if the child cannot possibly come to school.

Medical appointments, home administration of IV antibiotics and other treatment requirements can result in excessive absences for the student with cystic fibrosis. This might cause the child to feel concerned about keeping up academically. To ensure that the student continues to progress, educators should:

  • Evaluate for potential classification of the student as other health impaired.
  • Create an IEP that allows for the possibility of ongoing change and fluctuation in ability and physical stamina.
  • Provide a great deal of flexibility when the child has been absent. Give plenty of time to complete missed work.
  • Provide tutorial assistance if the student has been absent for a prolonged period or is having difficulty learning specific material.
  • Provide careful monitoring to determine whether the student shows a decline in performance.

For more information

Part 1 — Introduction, Incidence, Symptoms and Treatment

Part 3 — Suggested Form Letter to Communicate with Schools

National Heart, Lung, and Blood Institute

NHLBI Information Center
PO Box 30105
Bethesda, MD 20824-0105
301-592-8573

Cystic Fibrosis Foundation

800-344-4823

Contributed by:

Kathy Davis, MSEd, PhD
Associate Professor
Project Director, Connected Kansas Kids
Director, KU Kids Healing Place
University of Kansas Medical Center