Parents' Perception of the Benefit of Receiving a Patient Information Leaflet Prior to Attending a Craniofacial...

Area of Science:

• Medical communication
• Patient education
• Craniofacial anomalies management

Background:

• Craniofacial anomalies (CFAs) require multidisciplinary team (MDT) appointments for comprehensive care.
• Effective preparation for these appointments is crucial for parents managing children with CFAs.
• Patient information leaflets can potentially enhance parental understanding and preparedness.

Purpose of the Study:

• To evaluate parental experiences with a patient information leaflet designed for craniofacial multidisciplinary team (MDT) appointments.
• To assess the leaflet's effectiveness in preparing parents for their child's CFA treatment pathway.

Main Methods:

• A mixed-methods approach combining questionnaires and interviews.
• Participants included 33 parents who completed a questionnaire, with 14 subsequently interviewed.
• The intervention involved a patient information leaflet sent prior to the MDT appointment.

Main Results:

• 100% of parents found the leaflet easy to understand.
• 93.9% of parents reported the leaflet provided helpful information.
• Despite the leaflet's utility, many first-time attendees found the MDT setting overwhelming.

Conclusions:

• Patient information leaflets can be a valuable tool for preparing parents for CFA MDT appointments.
• Additional support and information may be necessary for some parents, particularly regarding the broader treatment pathway.
• Optimizing patient education is key to improving the experience of families with craniofacial anomalies.