Patient and Family Education

The Cystic Fibrosis Family Education Program is a comprehensive education program designed to enhance the abilities of children, adolescents and their families to manage cystic fibrosis. The program covers both the medical and psychosocial aspects of CF.

The program materials are a vehicle for children and families to highlight needs, put unspoken concerns on the table; and encourage them to find solutions.

The program is structured so that it can be integrated in ongoing health care with guidance and reinforcement of the health care providers; including the physician, respiratory therapists, social worker, and dietician. The program allows families to work independently at home on skills required by their child's current condition.

The program consists of four units, each covering a specific content area:

  • Respiratory Problems
  • Nutrition
  • Communication
  • Coping

Books

Each unit contains separate books or materials for early childhood, middle childhood, and adolescence, and for parents. Age appropriate skills are taught in the context of health are but with independent learning strategies.

For example, The Coping Unit contains the book, The Tree House designed for young children. This is a story about a young boy named Jason who has CF who plans to build a tree house with his best friend and his father, but Jason gets sick and has to postpone his building project. The book helps children identify the emotions that David may have been feeling when he was sick and had to stay inside his house to get better.

The Respiratory Problems Unit contains Taking care of My Lungs. This book, designed for middle childhood, helps children to learn about the respiratory system, infections, preventing infections, taking care of ones lungs, the best way to cough, & ways to cough up mucus. This book teaches children who are reluctant or embarrassed about coughing in front of people different ways to handle this situation so that they can feel more comfortable about their disease.

Your child will get started on the program at his or her annual examination. Families can request booklets at anytime a need arises.

The CF Family Education Program was developed at Baylor College of Medicine & Texas Children's Hospital. The program is made possible by an Educational Grant from Genentec, Inc.

Upstate Golisano Children's Hospital
One Children's Circle
Syracuse, NY 13210
Phone: 315 464-KIDS
Toll Free: 866 543-KIDS
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