Summary:
Data on nursing care of a group of chronically sick children suffering from the genetic disease - cystic fibrosis
(CF) is based on findings and experience of specialists working abroad in centres for CF. Home care is in western
European countries a common formof care and is preferred by the patients. In the team which participates in the care
of patients with CF a specialized CF nurse plays an irreplaceable role. She acts as coordinator, educates the patient
and his family. Seeking ways howto prolong the life of patientswithCF and improve its quality is at present a principle
which has an impact on requirements on themanagement of care provided to this group of children.
Key words:
cystic fibrosis, nursing care, home care, specialized CF nurse, quality of life
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