RESUMO
BACKGROUND AND AIM OF THE STUDY: Chronic infection with Pseudomonas aeruginosa (PA) is associated with accelerated worsening of lung disease in patients with cystic fibrosis (CF). Fears of PA are widespread among parents of CF children, and many parents take precautions at home to prevent acquisition of the bacterium from the environment. The present study was undertaken to describe the type and intensity of these activities. METHODS: Parents of 21 CF children (7 without prior PA infection, 10 with intermittent and 4 with chronic PA infection) were investigated using semistructured interviews. These were analyzed descriptively and with respect to predominant themes. Additionally, a German personality test was used to evaluate the influence of psychological factors. RESULTS: The clinical impression of widespread parental anxieties of PA infection was confirmed. Misunderstandings concerning PA infections were related to a simplistic concept of the underlying biological mechanisms. Some parents which we classified as 'bacterium-focussed' thought that each contact with PA would lead to bacterial infection. These parents used a large variety of measures, which concerned both domiciliary and outdoor surroundings and activities. At the other end of the spectrum were parents which we classified as 'child-focussed' who mostly supported (and relied on) the child's defense mechanism instead of hygienic measures. CONCLUSIONS: Recommendations by physicians on how to prevent PA acquisition from the environment should take into account possible non-intended side effects, since some parents will exaggerate daily precautions to the detriment of the child's (and the parent's) quality of life.