Adolescent and adult cystic fibrosis patients: how to leave home when you are depending on it?

Abstract

Over a period of 1 year, 11 on 23 CF adolescent or adult patients were referred to the childpsychiatrist (CP) for psychological problems and a notice of total dependency of their parents. The approach of the CP was systematic and family oriented. We noticed that on 11 patients only 6 came to the appointment and only 6 on 10 parents accepted to contact the CP. Of the 6 studied cases 4 showed severe psychopathology (1 sexual abuse, 1 physical and emotional abuse, 2 extreme over-protection), 2 showed psychological problems due to their restricted life conditions. On top of this, all 6 met enormous financial and social problems to gain more independency. The dependency of CF adolescent and adult patients is a family problem and a combination of relational, emotional, but also practical and financial problems and thus not exclusively due to their illness. As the prognosis of cystic fibrosis (CF) improved significantly, every aspect of this disease also became an "adult" problem. Independency is only one aspect and can not be considered on its own. We have to look at all technical, psychological and social adjustment problems those patients and their parents have to cope with.