Caring for the Siblings of Kids with Cystic Fibrosis

Reviewed by: HU Medical Review Board | Last reviewed: September 2019

When a child is diagnosed with cystic fibrosis (CF), life changes for the whole family, parents, and siblings included. Parents will have to shoulder most of the burden of care until their child with CF gets old enough to handle at least some of their own treatment regime, which eats into time spent with their other children. Even older children and teens with CF need extra parental support, which moves their attention from siblings who do not have CF.1

The impact of cystic fibrosis on a family

This reality can make brothers and sisters feel neglected, resentful, and jealous. They may feel guilt that their sibling is sick, guilt that they feel resentful, anxious that they will ‘catch’ CF, angry if they are asked to shoulder extra household chores, or embarrassed about their sibling coughing in public. All of these are natural, common emotions that should be expressed rather than bottled up.

Signs that siblings are stressed

The brothers and sisters of those with CF may exhibit many signals that mean they need extra attention from their parents. These include being anxious, depressed, withdrawn, or angry. Other warning signs include:

  • Losing interest in friends or favorite activities
  • Reverting to a former level of immaturity
  • Performing poorly in school
  • Pushing too hard to achieve or be a perfect child
  • Rebelling in negative ways (staying out too late, smoking, drinking)2

If you see any of these signs of stress, ask your child’s pediatrician for help. Your CF care team may be able to suggest support groups for siblings of children with chronic health problems.

What you can do as a parent or caregiver?

Many techniques exist to help parents make their well children feel as loved and appreciated as their sibling with cystic fibrosis. Buying them books about CF is a good place to start.

  • Encourage all of your children to learn about CF, their sibling’s treatment regimen, and why it’s so important
  • Carve out family time that does not revolve around CF or your child with CF
  • Set aside daily one-on-one time with each child, even if it’s brief
  • Let siblings participate in CF care so they feel pride and love in helping care for their brother or sister
  • Keep a regular date with your child/children who aren't diagnosed with CF to do something together
  • Don’t let well siblings overly coddle their brother or sister with CF
  • Make sure your child with CF participates in chores as much as they are able
  • Include siblings of CF patients in family decisions that affect them2

Checking in with your children

As your children grow older, you will need to continually reassess their emotional needs and create new strategies to help them process their feelings. Encouraging the expression of feelings is always a good place to start. As the old saying goes, sometimes talking can be the best medicine.2

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