Psychosocial Aspects of Cystic Fibrosis
Cystic Fibrosis is a serious chronic illness, one that can cause social, emotional and psychological problems for your entire family. It’s normal for you to be concerned or to feel worried, guilty, fearful, angry and resentful. But it’s important that everyone in your family works through these feelings.
Our social worker, along with other team members at the Cystic Fibrosis Center, can help. Our goal is to help you and your child to have as normal a life as possible. In addition to working with individual families, we offer an annual education day for newly diagnosed cystic fibrosis patients and their families.
Caring for Teens and Adults
Your child may be very young when first diagnosed with cystic fibrosis. As he/she reaches adolescence, he / she will likely encounter unique challenges. Two of these can be especially difficult to address: embarrassment at being different and the desire for independence.
Our healthcare team can help you and your teenager deal with these issues during adolescence. We expect your teenager to grow into adulthood and have career goals, financial concerns and a family if he / she so chooses. Our transition program will help your teenager as he / she moves toward adult care and an adult lifestyle. Your teenager will meet adult CF specialists at Cincinnati Children’s who will eventually care for your young adult at the University Hospital CF Center. By making this a smooth, cooperative transition, we can reach the best possible care outcome for your child as he / she becomes an adult.
Transition Begins at Diagnosis
To prepare patients for eventual transition to adult care, the process needs to begin at the time of diagnosis. With each stage of development, children with CF can learn about CF, their medications and treatments and, ultimately, how to manage their own care. The CF health care team will work with you and your child to meet each developmental milestone so that, by the time he/she transfers to adult care, he / she will be independent in managing his / her CF. Here is a list of some of the developmental milestones we will work with you and your child to achieve.
- Good Handwashing
- Help set up vest, hold nebulizer and push buttons
- Swallow pills
- Recognize medications they take
- Basic understanding of CF
- Know names of medicines
- Understand why they do airway clearance
- Show how they do airway clearance
- Start to be seen independently for part of clinic visit
- Know when, how and why to take enzymes
Early High School
- Recognize and discuss signs of illness
- Discuss college/vocational/career choices
- Call when ill, to make appointments, to get prescription refills
- Understand and manage most / all aspects of CF care