What parents of children with cystic fibrosis expect of educational events

Abstract

The aim of this study was to evaluate a parent/carer hospital-based educational event and increase future participation by tailoring the format to meet parent/carer preferences. Fifty parents/carers of children with cystic fibrosis (CF) completed semi-structured telephone surveys, interpreted using frequency data and content analysis. Most were satisfied with the topics covered, presentation mode, hospital location and day of the week, but 29 were dissatisfied with a 6pm start. The main benefit perceived was contact with other parents/carers, rather than the educational content. Of the non-attenders, some reported actively limiting participation in CF education and support groups as part of their coping style. No differences were observed between the health outcome measures of children of parents who attended compared with those of parents who did not. The active promotion of social contact between parents/carers and the tailoring of events to achieve this are paramount for increasing attendance.

Keywords: Cystic fibrosis; parent/carer education; parent/carer social contact.