title: Developing an information leaflet on 22q11.2 deletion syndrome for parents to use with professionals during healthcare encounters.
abstract: OBJECTIVE
  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).
  
  
  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.
  
  
  CONCLUSIONS
  Parents are well positioned to assist in development of information leaflets that can minimize "repeated storytelling" during professional encounters.
authors.affiliation: School of Nursing and Midwifery, Trinity College, Dublin, Ireland.
authors.forename: Honor
authors.initials: H
authors.lastname: Nicholl
authors.forename: Carmel
authors.initials: C
authors.lastname: Doyle
authors.forename: Thelma
authors.initials: T
authors.lastname: Begley
authors.forename: Maryanne
authors.initials: M
authors.lastname: Murphy
authors.forename: Anne
authors.initials: A
authors.lastname: Lawlor
authors.forename: Helen
authors.initials: H
authors.lastname: Malone
mesh_terms: D002648:Child; D003142:Communication; D004062:DiGeorge Syndrome / Q000628:therapy*; D005260:Female; D017144:Focus Groups; D006282:Health Personnel / Q000193:education*; D006801:Humans; D007494:Ireland; D008297:Male; D010174:Pamphlets; D010290:Parents / Q000193:education*; D011368:Professional-Family Relations; D011795:Surveys and Questionnaires
keywords: 22q11.2 deletion syndrome; information leaflet; parent; rare disorder; research