Tips for Discussing Five Feet Apart with Children who have Cystic Fibrosis

This March, there is a movie being released titled Five Feet Apart. The plot of this movie involves two adolescents with cystic fibrosis (CF) who become involved in a romantic relationship. The couple considers disregarding infection control guidelines and risking cross-infection of cepacia.

This movie has the potential to raise awareness about cystic fibrosis and the challenges that people with CF encounter. It also has the potential to trigger strong emotional reactions. For members of the general public who never knew much about cystic fibrosis, the movie might raise a lot of questions, which they may direct towards individuals living with CF and their families.

If approached thoughtfully, the Cystic Fibrosis Center team at Children’s Hospital of Philadelphia believes the movie may provide an opportunity for constructive conversations about these issues, and help raise awareness around the disease.

Here are a few suggestions for how to have developmentally appropriate conversations with your child about the movie:

1. Consider having a conversation with your child about what they know about the movie. Are they aware that the movie has themes of death due to complications from CF? What do they know about life expectancy for a person with CF? How does thinking about death make them feel? How can you best support your child as they experiences these feelings?
2. Consider pre-viewing the movie without your child. If you choose this option, make sure that you have a support person you can talk to about the emotional response you may experience.
3. View the movie with your child.
4. After viewing the movie, have a conversation about how the portrayal made them feel. Do they have any questions about CF and life expectancy after viewing the movie? Are they concerned about questions their peers could pose about CF as a result of viewing the movie?
5. Try to answer any questions your child has about CF with brief and simple facts. If you are unsure of any answer, tell your child truthfully that you do not know the answer but will try to find out and get back to them.
6. Validate any worries or concerns about the future your child may have, and do not discount or minimize their feelings. Simultaneously, try to provide your child with hope for a productive future and remind your child that daily treatment adherence plays an enormous role in their ability to achieve the healthiest future.
7. If your child tells you they do not want to discuss their thoughts/feelings associated with the movie at the time you ask, give your child space and tell them you are available to talk whenever they are ready.

The Cystic Fibrosis Foundation has created several resources to support conversations with your child:

• Five Feet Apart Discussion Guide
• A resource for friends or family members who may have specific questions about CF in response to viewing the movie

Please feel free to reach out directly to CHOP’s Cystic Fibrosis Center team with any additional questions or concerns you may have.