Developing an information leaflet on 22q11.2 deletion syndrome for parents to use with professionals during healthcare encounters

Hdl Handle:
http://hdl.handle.net/10147/344061
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
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
Publisher:
Wiley
Journal:
Journal for Specialists in Pediatric Nursing
Issue Date:
Jul-2014
URI:
http://hdl.handle.net/10147/344061
DOI:
10.1111/jspn.12078
Additional Links:
http://doi.wiley.com/10.1111/jspn.12078
Item Type:
Article
Language:
en
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.
Keywords:
PATIENT INFORMATION; PARENT; COMMUNICATION; INFANT; RARE DISEASE
Local subject classification:
DELETION SYNDROME
ISSN:
15390136
Sponsors:
Funder: This research was funded by a Martha McMenamin Scholarship. Disclosure: The authors report no actual or potential conflicts of interest.

Full metadata record

DC FieldValue Language
dc.contributor.authorNicholl, Honoren_GB
dc.contributor.authorDoyle, Carmelen_GB
dc.contributor.authorBegley, Thelmaen_GB
dc.contributor.authorMurphy, Maryanneen_GB
dc.contributor.authorLawlor, Anneen_GB
dc.contributor.authorMalone, Helenen_GB
dc.date.accessioned2015-02-03T08:56:40Z-
dc.date.available2015-02-03T08:56:40Z-
dc.date.issued2014-07-
dc.identifier.citationDeveloping 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 Nursingen_GB
dc.identifier.issn15390136-
dc.identifier.doi10.1111/jspn.12078-
dc.identifier.urihttp://hdl.handle.net/10147/344061-
dc.descriptionPurpose. 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.sponsorshipFunder: This research was funded by a Martha McMenamin Scholarship. Disclosure: The authors report no actual or potential conflicts of interest.en_GB
dc.language.isoenen
dc.publisherWileyen_GB
dc.relation.urlhttp://doi.wiley.com/10.1111/jspn.12078en_GB
dc.rightsArchived with thanks to Journal for Specialists in Pediatric Nursingen_GB
dc.subjectPATIENT INFORMATIONen_GB
dc.subjectPARENTen_GB
dc.subjectCOMMUNICATIONen_GB
dc.subjectINFANTen_GB
dc.subjectRARE DISEASEen_GB
dc.subject.otherDELETION SYNDROMEen_GB
dc.titleDeveloping an information leaflet on 22q11.2 deletion syndrome for parents to use with professionals during healthcare encountersen_GB
dc.typeArticleen
dc.identifier.journalJournal for Specialists in Pediatric Nursingen_GB
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