ABSTRACT
Among respiratory disorders, cystic fibrosis (CF) is a disease with farreaching emotional and psychological consequences for children and parents who confront the disease. The birth of a child with cystic fibrosis genetically links both parents to this lethal disorder, in many cases when the parents were not even aware that they were carriers of the disorder. Parents often experience feelings of grief, guilt, and fear for the future. The children experience a time-consuming, rigorous daily treatment regimen, swallow handfuls of pills per day, and demonstrate symptoms such as coughing up sputum or emitting foul-smelling flatulence or stools that are embarrassing to them. Physically, they may demonstrate poor growth or delayed development, clubbing of the fingers or toes, and a barrelchested appearance. Many of these children miss extended periods of school and social activities because periodic hospitalizations for pulmonary ‘tune-up’ are necessary. And, as they grow up, they face declining health and an inevitably foreshortened future, while simultaneously confronting the normal developmental tasks of establishing autonomy, achieving an identity, and forming relationships. Yet, in the face of this devastating illness, most children and parents demonstrate a remarkable resilience that motivates and inspires health care professionals who work with individuals with cystic fibrosis.
