Caring for Someone with Cystic Fibrosis
Reviewed by: HU Medical Review Board | Last reviewed: September 2019 | Last updated: July 2020
The strain of caring for someone with a chronic health condition like cystic fibrosis (CF) can be challenging. Finding ways to cope with the many challenges are a necessary part of adjusting to a diagnosis of CF.
Working with your child’s daycare, school, or camp
Children with CF should participate in everyday kid activities like going to daycare or school, staying overnight with friends, and going away to camp. These activities give your child a sense of normalcy while they learn independence and build social skills. Going to daycare, school and camps also require substantial preparation and planning on the part of caregivers.
Whether your child hangs at a friend’s house or goes to high school, you’ll quickly become accustomed to talking with parents, teachers, and organizers of activities about infection prevention and control, your child’s treatment regime, and how vital both are to your child’s health.1,2
Balancing cystic fibrosis care with needs of your other children
It’s natural for parents to spend extra time with their child who has a chronic illness like cystic fibrosis. However, their siblings may feel neglected or ignored unless their parents work to balance all of their children’s physical and emotional needs.
Many techniques exist to help busy parents fit in the needs of all of their children. The good news is when parents handle this balance well, siblings of those with CF often learn empathy, adaptability, and compassion for others.2
Sharing responsibility with your child for cystic fibrosis care
As difficult as it may be, it’s vital to your child’s long-term health that they learn how to perform their own CF treatments and manage their own care. Sharing responsibility for CF care is best done as a gradual process. Children as young as 4 and 5 can begin to go get their nebulizer or remind you about their enzymes at mealtimes.
By the time your child with CF is a teenager, they will begin the formal transition to adult care and assume most of the responsibility for their care themselves. Don’t worry: They’ll still need your supervision and support.1,2
Coping with caregiving responsibilities
If your child or loved one has cystic fibrosis, don’t despair. There are many support services that you can access to help you manage your child’s care. Members of your child’s CF care team can help you find those resources. You can also educate yourself about the disease and about current treatments and promising research. Remember, there is no right or wrong emotional response and you are not alone.