Purpose: The purpose of this project was to gather parents' expertise to inform an educational leaflet for parents to share with professionals caring for children with 22q11.2 deletion syndrome (22q11.2 DS).
Design and methods: A mixed-method design was adopted. Data were collected by one focus group interview (n = 8) and questionnaires with 92 other parents of children with 22q11.2 DS.
Results: Quantitative and qualitative responses informed the development of an information leaflet.
Practice implications: Parents are well positioned to assist in development of information leaflets that can minimize "repeated storytelling" during professional encounters.
Keywords: 22q11.2 deletion syndrome; information leaflet; parent; rare disorder; research.
© 2014, Wiley Periodicals, Inc.