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Developing an information leaflet on 22q11.2 deletion syndrome for parents to use with professionals during healthcare encounters
Author(s) -
Nicholl Honor,
Doyle Carmel,
Begley Thelma,
Murphy Maryanne,
Lawlor Anne,
Malone Helen
Publication year - 2014
Publication title -
journal for specialists in pediatric nursing
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.499
H-Index - 38
eISSN - 1744-6155
pISSN - 1539-0136
DOI - 10.1111/jspn.12078
Subject(s) - health professionals , storytelling , focus group , psychology , medical education , health care , nursing , medicine , sociology , linguistics , philosophy , narrative , anthropology , economics , economic growth
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.