Abstract:

Cystic fibrosis (KF) is a chronic disease that holds many systems, characterized by transitional autosomal resessive, disfunctional disorder in the exocrine glands. The prolongation of the expected lifetime in KF and the good prognosis of the disease is an important factor in the preference of multidisciplinary care approaches. The purpose of nursing in KF is to enhance and maintain the child’s respiratory functions, to provide optimal nutrition, to ensure the child’s age-friendly growth development and to support parents from a psychosocial point of view. As KF is a life-threatening disease, frequent hospitalization, the high risk of morbidity, the economic and social problems experienced, children's nurses should be aware of the problems that the family is experiencing and support their families by providing consultancy services. KFli, supported by nursing initiatives, shows that children have a positive impact on mortality and morbidity rates. Planned disease management training initiatives and family strengthening programs implemented to KF’s children and parents enhance the parents’ disease management skills. Increasing the level of knowledge of parents about disease management, answering questions and ensuring the participation of parents in decision-making has an improved effect on the quality of life and duration of children with KF. The development of the patient and the parent’s existing potential and the protection of their legal rights is one of the defensive roles of child nurses. The sharing of nurses with their parents of their care experience in KF is an effective initiative in improving the quality of care and reducing the psychosocial problems the parents experience. Nursing education plays an important role in determining the care needs of KF and parents and ensuring the adaptation of the disease to the daily life.

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