287 Perception of first infection with Pseudomonas aeruginosa by people with CF, their families and close friends

Abstract

Objectives A balanced understanding of Pseudomonas aeruginosa (PA) could reduce anxiety in people affected by cystic fibrosis (CF). We aimed to determine how people with CF, their families and close friends, perceive first infection with PA. Methods A SurveyMonkey questionnaire was distributed via social media. Initially a keyword analysis was undertaken to identify the most frequently used words. Significant keywords were chosen and examined in their differing contexts then finally thematic analysis identified the key themes emerging. Results 393 respondents completed the survey, of whom 97 had CF, 263 had children with CF and the remaining 33 comprised other relatives, partners and friends. The main themes identified were 1.the emotional impact of PA, including fear for the future, Being scared it will cause lung damage to my precious child, 2.the burden of treatment with impact on quality of life, Another hour of every day lost to treatments, and 3.incomplete knowledge, I didn't know about it until she contracted it. Conclusion Patients and their families report fear and anxiety in relation to infection with PA and significant impacts on quality of life resulting from the associated treatments. Healthcare professionals need to provide patients and their families with a balanced understanding, conveying the risks of PA infection, without causing unnecessary distress or promoting adverse health behaviours.