Transition from paediatric to adult healthcare for young people with cystic fibrosis: Parents’ information needs

Abstract

Parents of young people with cystic fibrosis (YPWCF) play an important role during the transition from paediatric to adult health services. There is limited evidence on parental information needs and the extent to which they are met. An online survey was conducted targeting a finite population of 190 parents of YPWCF in Ireland. Fifty-nine parents responded (31% response rate). Parents reported the need for more general preparation and timing of the transfer, more information regarding the differences between adult and child health services and how their child will self-manage his/her illness in the future. Most parents received information on the timing of transfer and new healthcare providers but reported being insufficiently informed about their legal status relating to medical confidentiality for their adult child and community resources available for their child after transition to adult health services. The findings highlight the importance of information and preparation for caregivers as well as young people to promote successful transition to adult healthcare. Providing parents with clear information and anticipatory guidance are simple changes in practice that may lead to improvements in transition experiences.