Communication of information about reproductive and sexual health in cystic fibrosis. Patients, parents and caregivers' experience

BackgroundThis review evaluated research concerning communication and information about reproductive and sexual health (RSH) in cystic fibrosis (CF).MethodsPapers in the English language reporting RSH issues in CF, published between January 2000 and December 2010, were included. The review focused on (a) the content of information given to parents and patients, (b) the timing of information, (c) the sources of information, (d) attitudes and emotional reactions, (e) chronic illness and sexual behavior, (f) methodological and cultural considerations and (g) ethical considerations.ResultsEleven papers were identified originating from Australia, the United Kingdom and Poland. Patients and parents expressed the need for up-to-date, CF-related verbal and written information, provided by the CF team and infertility specialists. Patients were often embarrassed to initiate a discussion. Health care providers expressed the need for training to counsel patients in RSH.ConclusionA pro-active discussion of RSH issues is proposed as a standard part of the care-pathway. A list of recommendations is given to initiate this process.