Developing an information leaflet on 22q11.2 deletion syndrome for parents to use with professionals during healthcare encounters
| dc.contributor.author | Nicholl, Honor | |
| dc.contributor.author | Doyle, Carmel | |
| dc.contributor.author | Begley, Thelma | |
| dc.contributor.author | Murphy, Maryanne | |
| dc.contributor.author | Lawlor, Anne | |
| dc.contributor.author | Malone, Helen | |
| dc.date.accessioned | 2015-02-03T08:56:40Z | |
| dc.date.available | 2015-02-03T08:56:40Z | |
| dc.date.issued | 2014-07 | |
| dc.identifier.citation | Developing an information leaflet on 22q11.2 deletion syndrome for parents to use with professionals during healthcare encounters 2014, 19 (3):238 Journal for Specialists in Pediatric Nursing | en_GB |
| dc.identifier.issn | 15390136 | |
| dc.identifier.doi | 10.1111/jspn.12078 | |
| dc.identifier.uri | http://hdl.handle.net/10147/344061 | |
| dc.description | Purpose. The purpose of this project was to develop a parent to professional information leaflet for parents to share with professionals caring for children with 22q11.2 Deletion Syndrome (22q11.2 DS). Research Design and Methods. A mixed method design was adopted. Data were collected by focused group interview and questionnaire with parents of children with 22q11.2 DS and an information leaflet was developed. Results. Parents (48%) identified the General Practitioner (GP) as the key health professional for which information was required. Practice Implications. Parents should be involved in development of information leaflets in order to minimise ‘repeated storytelling’ during professional encounters. | en_GB |
| dc.description.sponsorship | Funder: This research was funded by a Martha McMenamin Scholarship. Disclosure: The authors report no actual or potential conflicts of interest. | en_GB |
| dc.language.iso | en | en |
| dc.publisher | Wiley | en_GB |
| dc.relation.url | http://doi.wiley.com/10.1111/jspn.12078 | en_GB |
| dc.rights | Archived with thanks to Journal for Specialists in Pediatric Nursing | en_GB |
| dc.subject | PATIENT INFORMATION | en_GB |
| dc.subject | PARENT | en_GB |
| dc.subject | COMMUNICATION | en_GB |
| dc.subject | INFANT | en_GB |
| dc.subject | RARE DISEASE | en_GB |
| dc.subject.other | DELETION SYNDROME | en_GB |
| dc.title | Developing an information leaflet on 22q11.2 deletion syndrome for parents to use with professionals during healthcare encounters | en_GB |
| dc.type | Article | en |
| dc.identifier.journal | Journal for Specialists in Pediatric Nursing | en_GB |
| refterms.dateFOA | 2018-08-25T00:38:33Z |
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