Psychological aspects of the care of children with cystic fibrosis.

TLDR: With early recognition of the disease the patient and his family often become involved in a program of intensive treatment that continues for the remainder of his life, with death usually intervening in early adult life.

Abstract: Recent advances in detection and management of cystic fibrosis have significantly improved the affected individual’s chances of survival beyond childhood years. With early recognition of the disease the patient and his family often become involved in a program of intensive treatment that continues for the remainder of his life.1’3 The daily care at home necessitates large expenditures of time and effort for the patient and his parents. The financial burden can be considerable, resulting often in the depletion of savings and the forgoing of luxuries and vacations. Siblings frequently must defer their needs and desires as the patient becomes the focus of attention. In the more severe cases, recurrent hospitalization of the sick child for complications disrupts family routine and creates emotional crises. Finally, despite the most adequate care, the course of the disease may be inexorable, with death usually intervening in early adult life4.