Table 1

Summary of thematic analysis

ThemeCodeExample of data
Emotional impactFear“My experience in relation to lung function was insignificant, however, the psychological effect was all-consuming. I even had to take time off work to get my head around it. The magnitude & significance was just too scary!” (patient)
Resignation“Terrifying bacteria we spend our lives trying to avoid, yet accept it is probably inevitable…” (parent)
Realisation“[pseudomonas is]…a slap in the face that CF is real” (parent)
Treatment burdenRestricting“It means having to do more treatments every day, particularly nebulised antibiotics which are time consuming and restrict your freedom to travel and work. This also marks you out as being different from peers which can be hard to deal with psychologically” (patient)
Stressful“Now J needs nebs, our day is filled with resistance, arguing and tension because it's another thing he doesn't want to do…” (parent)
Invasive“The start of lots of extra powerful drugs that can cause lots of harm to the body of my son” (parent)
KnowledgeLacking awareness“Not something I had been pre-warned about or even read about” (parent)
Incomplete“I thought I was going to die very quickly after getting it” (patient)
Beneficial“…the earlier you know the harder you can hit it with treatment” (patient)