We found a match
Your institution may have access to this item. Find your institution then sign in to continue.
- Title
Developing an information leaflet on 22q11.2 deletion syndrome for parents to use with professionals during healthcare encounters.
- Authors
Nicholl, Honor; Doyle, Carmel; Begley, Thelma; Murphy, Maryanne; Lawlor, Anne; Malone, Helen
- Abstract
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.
- Subjects
IRELAND; EDUCATION of parents; CENSUS; COMMUNICATION; CONTENT analysis; FOCUS groups; FRUSTRATION; INTERVIEWING; RESEARCH methodology; MEDICAL personnel; PAMPHLETS; PATIENT education; QUESTIONNAIRES; RESEARCH funding; SURVEYS; TEACHING aids; THEMATIC analysis; PARENT attitudes; PATIENTS' families; DATA analysis software; 22Q11 deletion syndrome
- Publication
Journal for Specialists in Pediatric Nursing, 2014, Vol 19, Issue 3, p238
- ISSN
1539-0136
- Publication type
Journal Article
- DOI
10.1111/jspn.12078