Cincinnati Children's Blog
  • Y&H Podcast
  • Newsletter Subscribe
  • CincinnatiChildrens.org
  • Contact Us
  • Blog
  • Healthy Living
  • Rare and Complex Conditions
  • Safety and Prevention
  • Heart Conditions
  • Learning and Growing
  • Research and Discoveries
  • Blog
  • Healthy Living
  • Rare and Complex Conditions
  • Safety and Prevention
  • Heart Conditions
  • Learning and Growing
  • Research and Discoveries
  • Y&H Podcast
  • Newsletter Subscribe
  • CincinnatiChildrens.org
  • Contact Us
HOME/Rare and Complex Conditions/Cystic Fibrosis Questionnaire: Is Your Adolescent Ready for Independence?

Cystic Fibrosis Questionnaire: Is Your Adolescent Ready for Independence?

Cystic Fibrosis Questionnaire: Is Your Adolescent Ready for Independence?
December 12, 2017
Lisa Burns, MD
0 Comments

There was a time when children with cystic fibrosis weren’t expected to live past elementary school. Now, for the first time, there are more adults living with cystic fibrosis than children.

Cystic fibrosis is a genetic condition that affects the lungs and digestive system. Over time, with advancements in care, kids are living longer and longer and we want them to be productive adults.  

Because of this, our Cystic Fibrosis Center created a formalized transition program to help children gain health care independence. This is not an easy process, considering how complex the care plans are for children with cystic fibrosis. But that’s why we start early. We begin talking about it at diagnosis – plan for your child to be a happy, healthy adult! There will be many learnings along the way, and we will address various transition milestones as children get older.

By learning how to take care of themselves in their early teenage years, they gain the skills they need to be healthy adults.

We’ve found that there are a lot of mixed emotions around this time. Adolescents are initially overwhelmed by the idea of being in charge of their own care. But they quickly move to feeling confident that they can do it all. Similarly, parents are stressed about the idea of handing it over because they’ve been managing it for so long. But we witness a lot of joy in parents’ eyes when they see their teens become self-sufficient. They’re proud of their children, and their children are proud of themselves. These a-ha moments are some of my favorite.

If your child with cystic fibrosis is closing in on the teenage years and you’re wondering if he or she is ready for independence, take our questionnaire:

Questions to assess if your child is ready to manage his own health care: Yes, does well Needs some help No, needs help I don’t know why this is important
My child understands CF and can describe to others
I understand CF and can describe it to others
My child knows how CF can affect his future health
My child speaks up to tell me what she needs
I feel comfortable elaving the room during a CF clinic visit
My child prepares and takes her own respiratory treatments
My child prepares and takes his own medications
My child understand the purpose of each medication
My child understands the importance of regular exercise
When my child is sick, she knows how to get the right help
My child makes his own phone calls when she is sick, needs an appointment or refills.
I feel comfortable with my child making the above calls
My child takes part in discussions about his health care
I have talked to my child about the risks of alcohol, drugs, cigarettes
My child understands how CF affects reporduction and fertility

In our transition program, we ask teenagers similar questions to give us a starting point from which to work. Feel free to use these as a conversation starter with your child and care team. Learning how to care for themselves and knowing when to ask for help, are some of the most important, life-long skills for gaining independence.

For more information about our Cystic Fibrosis Center, or to schedule an appointment, please call 513-636-6771.

Related Articles

Social Media: What Effect Is It Having on Kids?
Social Media: What Effect Is It Having on Kids?
Are Protein Powders, Drinks and Bars Safe for Teens?
Are Protein Powders, Drinks and Bars Safe for Teens?
Parents of Teens: 8 Facts To Know About Nicotine and E-Cigarettes
Parents of Teens: 8 Facts To Know About Nicotine and E-Cigarettes
Disordered Eating: How to Recognize When A Child Needs Help
Disordered Eating: How to Recognize When A Child Needs Help
TAGS:
  • cystic fibrosis
  • teen health

About the author: Lisa Burns, MD

Lisa Burns, MD, is a pulmonologist in the pediatric and adult Cystic Fibrosis Centers at Cincinnati Children’s and University of Cincinnati.

Write A Comment

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

No Comments Yet

Topics

  • Cancer and Blood Diseases
  • Child Development and Behavior
  • Childhood Obesity
  • Chronic Care Networks
  • Cincinnati Walks for Kids
  • Featured Faces
  • Fetal Conditions
  • Fitness and Nutrition
  • Food Allergies
  • Ghana 2012
  • Health Care Public Policy
  • Health Care Quality
  • Health Care Reform
  • Healthy Living
  • Heart Conditions
  • Hospital Operations
  • Learning and Growing
  • Nurses Week 2012
  • Patient Family Experience
  • Patient Flow
  • Patient Safety
  • Pin of the Week
  • Rare and Complex Conditions
  • Research and Discoveries
  • Safety and Prevention
  • Share Your Story
  • Technology
  • The Young & Healthy Podcast
  • Uncategorized
  • Vaccines
  • Volunteerism
  • What's New
See All Topics
See Less Topics

Subscribe

Subscribe today to our family newsletter for tips, blog posts, podcasts and more.

Subscribe Now

Popular Posts

  • 6 Questions to Ask When Your Child Complains of Chest Pain 839 views

  • Lean, Purple Drank, Sizzurp: A Dangerous Teenage Drink 611 views

  • Stuttering In Young Kids: When To Be Concerned 508 views

  • Family Finds Heart Care Needed for Complex Condition 301 views

  • How To Increase Calories In Your Underweight Child’s Diet 264 views

  • Tips for Helping Babies Transition to Cow’s Milk 222 views

About

The Cincinnati Children’s blog features thoughts and perspectives from our experts on all things pediatric health. This blog does not provide medical advice, diagnosis, or treatment. Learn More »

Contact Us
  • 3333 Burnet Avenue, Cincinnati, Ohio 45229-3026
  • 1-513-636-4200 | 1-800-344-2462
  • TTY: 1-513-636-4900
  • socialmedia@cchmc.org
Connect With Us
  • Newsletter Subscribe
  • CincinnatiChildrens.org
  • Contact Us

© 2009-2025 Cincinnati Children’s Hospital Medical Center