Cystic fibrosis: a balancing act?
Cystic fibrosis has evolved from an illness where children died in their teens to one with a longer life expectancy into adult life. Patients now usually keep themselves in a good physical condition, which gives them an opportunity to live a relatively 'normal' life. There is a catch: a patient can only achieve this by adhering to a strict, complex and time-consuming therapeutic schedule, thereby introducing an abnormal element into a 'normal' life. In this paper we discuss the issue of balancing 'being ill' with 'living like healthy children', and argue that 'normality' is as crucial in any developing CF child as the 'permission' to be ill. An important question arises as a consequence of the major improvements in CF care, namely--'Should all care be done at home or are there advantages in doing part of it in hospital or clinic?' We contend that this is where the balance lies as there are advantages for some care to continue to be done in hospital.
Havermans
Trudy
T
University Hospital Leuven, Belgium. trudy.havermans@uz.kuleuven.ac.be
De Boeck
Kris
K
D000900:Anti-Bacterial Agents / Q000627:therapeutic use; D017028:Caregivers / Q000523:psychology; D002648:Child; D003550:Cystic Fibrosis / Q000150:complications*; D005190:Family / Q000523:psychology; D006699:Home Care Services; D006801:Humans; D012648:Self Care; D013315:Stress, Psychological / Q000209:etiology
D000900:Anti-Bacterial Agents