Parents’ Perception of the Benefit of Receiving a Patient Information Leaflet Prior to Attending a Craniofacial Multidisciplinary Team Appointment

Abstract

Objective To investigate how a patient information leaflet describing what to expect during a craniofacial multidisciplinary team (MDT) appointment is experienced by parents of children with craniofacial anomalies (CFAs) and whether it helps with preparation for the appointment. Design Combination of qualitative and quantitative design. Setting Norwegian National Unit for Craniofacial Surgery. Participants Thirty-three parents of children with CFAs completed the questionnaire and fourteen were subsequently interviewed. Interventions A patient information leaflet, sent to all parents before their MDT appointment. Main Outcome Measures Descriptive questionnaire data and interview data. Results All parents ( N = 33, 100%) found the leaflet easy to understand, while 31 (93.9%) found it provided helpful information. However, many first-time attendees still found the MDT setting overwhelming. Conclusions A leaflet may be helpful for parents when preparing for their child's MDT appointment. However, some parents may need additional support and information related to their child's treatment pathway.