Parents' understanding of current and future treatments for cystic fibrosis and the implications for their child's future

摘要: Current treatments for cystic fibrosis (CF) have largely focused on symptom management. Consequently little attention has been paid to understanding the genetics of CF, in particular gene mutations and mutation classes. Advances most recent development being Ivacaftor, are starting become specific. It is becoming increasingly important understand what patients with CF parents know about whether they aware Until now, research exploring parents’ knowledge almost absent. 30 children aged 5 or under participated a survey that explored their CF. They were asked identify child’s mutations, classes, how much an impact this health. The results found knew mutation, though only significant minority correctly identified class. A further 7 took part semi structured interviews more depth, views current future treatments, outlooks. An other clinical trials, means them was also explored. Using thematic analysis, five core themes subthemes identified: arrival CF; adjusting management treatments; approaches thinking future; I feel new developments.. implications practice discussed.