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Transitioning Care for 8-12 Years Olds with Cystic Fibrosis

Children with cystic fibrosis (CF) will more than likely one day become adults with CF. This means they need to understand their disease and its complex treatment so that they can one day manage their illness as a fully functioning adult. Ages 8 to 12 are the time to begin learning the basics of CF, medication names and purposes, how to clean equipment, and the importance of exercise and good nutrition.

When to begin transitioning responsibilities

Just as a baby crawls before it learns to walk, so must children with CF learn how to care for themselves in small stages. It’s a long-term educational program that needs to begin early. Depending on the child, ages 6 to 8 is not too early to start learning new things and taking on more responsibilities. Information should be presented in age-appropriate detail that gradually progresses in complexity. Studies show that a focus on adult health builds a sense of self-worth and hope for the future.1

Ages 8 to 10

Children ages 8 to 10 should begin to learn the basics of cystic fibrosis. This includes a basic understanding of:

  • Why some people have CF and others do not (genetics)
  • What CF does to the body
  • How the lungs and digestive system work
  • Medications and simple reasons for taking them
  • The basics of infection prevention and control
  • The importance of exercise, salt intake, and sleep
  • CF care team members and what they do

Children this age should also begin to help caregivers remember when it’s time for enzymes, airway clearance and medications, and set-up and clean equipment with supervision.

At doctor’s appointments, caregivers will still be the primary source when answering the CF team’s questions about symptoms, treatments, and insurance. Treatment and sleep schedules, diet, doctor’s appointments, coordination with school and camps, and medication tracking are still the primary responsibility of the parents.2,3

Ages 10 to 12

The tween years are the time to gradually build independence by expanding what the child with CF knows about their condition and how to care for themselves. For instance, a child ages 10-12 should begin to pay attention to and report changes in their cough or how often they are going to the bathroom.

Based on the child’s maturity, they should be able to:

  • Take enzymes on their own
  • Remember to take more salt and fluids when it’s hot or they are exercising
  • Remember to bring pills and enzymes when away from home
  • Expand their understanding of how the lungs and digestive system work, infection prevention and control, their medications, and reasons why each drug is needed
  • Begin to track their FEV1 and BMI numbers and understand how these numbers relate to nutrition and their treatment plan
  • Learn about CF-linked health issues such as CF-related diabetes, liver disease, and sinus issues

At doctor’s appointments, the child should try to answer questions about their symptoms and treatments without help from their caregiver. This is also the time to begin teaching the child about how their equipment works and how to get replacements, about sexual development, and their rights at school.2,3

The goal of transitioning care responsibilities

The ultimate goal of this gradual education and expansion of responsibilities helps build a sense of optimism for the future and a healthy self-reliance. Studies have proven that children who are overly dependent on their parents later struggle with poor adherence in adulthood. That’s why, as hard as it may be for parents to let go of control, it’s vital for the long-term health of their child with CF.1

Written by: Jessica Johns Pool | Last reviewed: September 2019
  1. Goralski JL, Nasr SZ, Uluer A. Overcoming barriers to a successful transition from pediatric to adult care. Pediatric Pulmonology. 2017;52:S52–S60. https://doi.org/10.1002/ppul.23778.
  2. CF RISE. CF Milestones. Available at: https://cfrise.com/cystic-fibrosis-milestones. Accessed 5/23/2019.
  3. University of Wisconsin Children’s Hospital. Moving On…Transitioning from the Pediatric to the Adult Care Team. Available at: University of Wisconsin Children’s Hospital Handbook. Accessed 5/23/2019.