Educational Needs of Cystic Fibrosis Patients

In 1981, the life expectancy of children with cystic fibrosis was just 20 years old. Education regarding cystic fibrosis was primarily intended for parents of children diagnosed with cystic fibrosis, not necessarily the children themselves. Advances in the treatment of cystic fibrosis have increased the life expectancy to the mid-30's (Cystic Fibrosis Foundation, 2005) necessitating educational programs not only for parents of children with cystic fibrosis, but also for adolescents and young adults who will move into self-care as they become more independent of their parents. Adolescents with cystic fibrosis have the normal challenge of preparing for adulthood yet face additional challenges associated with their disease. These patients require an educational program specifically designed for their unique needs. This paper will discuss the specific educational needs of adolescents with cystic fibrosis. Cystic Fibrosis Incidence, Physiology and Treatment

Cystic fibrosis is the most common genetic disease found in Caucasians, with a "carrier frequency of 1/29 in U.S. Caucasians and an incidence of approximately 1/3,300" (Brown & Schwind, June 1999, p. 137). Cystic fibrosis does occur in other ethnic groups but the incidence is much smaller. Cystic fibrosis is an "inherited autosomal-recessive disorder of the exocrine glands" (Mosby, 2002). Autosomal-recessive means that each parent must carry the specific gene to pass on the condition. Physiology