Formation of a type 1 diabetes young adult patient and public involvement panel to develop a health behaviour change intervention: the D1 Now study

Hdl Handle:
http://hdl.handle.net/10147/622630
Title:
Formation of a type 1 diabetes young adult patient and public involvement panel to develop a health behaviour change intervention: the D1 Now study
Authors:
O’Hara, Mary Clare ( 0000-0002-3187-0127 ) ; Cunningham, Áine; Keighron, Cameron; Allen, Gary; Caulfield, Antony; Duffy, Ciara; Long, Michelle; Mallon, Madeleine; Mullins, Monica; Tonra, Garret; Simkin, Sarah; Hynes, Lisa; O’Donnell, Máire; Byrne, Molly; Dinneen, Sean F
Citation:
Formation of a type 1 diabetes young adult patient and public involvement panel to develop a health behaviour change intervention: the D1 Now study 2017, 3 (1) Research Involvement and Engagement
Publisher:
BioMed Central
Journal:
Research Involvement and Engagement
Issue Date:
23-Oct-2017
URI:
http://hdl.handle.net/10147/622630
DOI:
10.1186/s40900-017-0068-9
Additional Links:
http://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-017-0068-9
Abstract:
Abstract: Background Research indicates that young adults (18–25 year olds) with type 1 diabetes (T1D) often disengage from health services and their general diabetes management. Involving young adults with T1D in co-designing research to develop a behaviour change intervention to improve engagement with health services could potentially improve overall self management and health. A local youth mental health organisation called Jigsaw, Galway developed a very successful model for involving users in service design and development. Based on this model, the aim was to form a Young Adult Panel (YAP) of 18–25 year olds with T1D and involve them in all aspects of a study to develop an intervention to improve health and wellbeing for young adults with T1D called D1 Now. Methods Recruitment of young adults was achieved through a multimedia campaign. A consultation event was organised, followed by interviews with interested young adults. A panel of 8 members was selected. Following initial training for YAP members in committee skills and an introduction to different research methods and terms, YAP members participated in different stages of the research process. They were represented on the research study steering group and attended research meetings. They developed research materials, reviewed and interpreted research findings and helped develop the online platform to enhance engagement between young adults and their diabetes healthcare providers. They contributed to an international consensus conference on health services delivery for young adults with T1D and wrote specific sections of a further grant application to test out the new intervention. Results As a direct result of the YAP, a meaningful dialogue has opened up between healthcare providers and young adults within the D1 Now research team. Their involvement has led to a better understanding of what needs to be achieved in order to improve health service delivery. They have been active members in co-designing a health behaviour change. intervention to improve engagement between young adults with T1D and healthcare providers which will be evaluated in future research. Conclusion Through the formation of the YAP, we have demonstrated that involving young adults with T1D in healthcare research is feasible and productive.
Item Type:
Article In Press
Language:
en
Keywords:
DIABETES MELLITUS; BEHAVIOUR CHANGE
ISSN:
2056-7529
Sponsors:
Health Research Board (Ireland), Health Research Award (HRA-HSR-2013-316).Novo Nordisk Ireland.

Full metadata record

DC FieldValue Language
dc.contributor.authorO’Hara, Mary Clareen
dc.contributor.authorCunningham, Áineen
dc.contributor.authorKeighron, Cameronen
dc.contributor.authorAllen, Garyen
dc.contributor.authorCaulfield, Antonyen
dc.contributor.authorDuffy, Ciaraen
dc.contributor.authorLong, Michelleen
dc.contributor.authorMallon, Madeleineen
dc.contributor.authorMullins, Monicaen
dc.contributor.authorTonra, Garreten
dc.contributor.authorSimkin, Sarahen
dc.contributor.authorHynes, Lisaen
dc.contributor.authorO’Donnell, Máireen
dc.contributor.authorByrne, Mollyen
dc.contributor.authorDinneen, Sean Fen
dc.date.accessioned2017-11-02T10:35:06Z-
dc.date.available2017-11-02T10:35:06Z-
dc.date.issued2017-10-23-
dc.identifier.citationFormation of a type 1 diabetes young adult patient and public involvement panel to develop a health behaviour change intervention: the D1 Now study 2017, 3 (1) Research Involvement and Engagementen
dc.identifier.issn2056-7529-
dc.identifier.doi10.1186/s40900-017-0068-9-
dc.identifier.urihttp://hdl.handle.net/10147/622630-
dc.description.abstractAbstract: Background Research indicates that young adults (18–25 year olds) with type 1 diabetes (T1D) often disengage from health services and their general diabetes management. Involving young adults with T1D in co-designing research to develop a behaviour change intervention to improve engagement with health services could potentially improve overall self management and health. A local youth mental health organisation called Jigsaw, Galway developed a very successful model for involving users in service design and development. Based on this model, the aim was to form a Young Adult Panel (YAP) of 18–25 year olds with T1D and involve them in all aspects of a study to develop an intervention to improve health and wellbeing for young adults with T1D called D1 Now. Methods Recruitment of young adults was achieved through a multimedia campaign. A consultation event was organised, followed by interviews with interested young adults. A panel of 8 members was selected. Following initial training for YAP members in committee skills and an introduction to different research methods and terms, YAP members participated in different stages of the research process. They were represented on the research study steering group and attended research meetings. They developed research materials, reviewed and interpreted research findings and helped develop the online platform to enhance engagement between young adults and their diabetes healthcare providers. They contributed to an international consensus conference on health services delivery for young adults with T1D and wrote specific sections of a further grant application to test out the new intervention. Results As a direct result of the YAP, a meaningful dialogue has opened up between healthcare providers and young adults within the D1 Now research team. Their involvement has led to a better understanding of what needs to be achieved in order to improve health service delivery. They have been active members in co-designing a health behaviour change. intervention to improve engagement between young adults with T1D and healthcare providers which will be evaluated in future research. Conclusion Through the formation of the YAP, we have demonstrated that involving young adults with T1D in healthcare research is feasible and productive.en
dc.description.sponsorshipHealth Research Board (Ireland), Health Research Award (HRA-HSR-2013-316).Novo Nordisk Ireland.en
dc.language.isoenen
dc.publisherBioMed Centralen
dc.relation.urlhttp://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-017-0068-9en
dc.rightsArchived with thanks to Research Involvement and Engagementen
dc.subjectDIABETES MELLITUSen
dc.subjectBEHAVIOUR CHANGEen
dc.titleFormation of a type 1 diabetes young adult patient and public involvement panel to develop a health behaviour change intervention: the D1 Now studyen
dc.typeArticle In Pressen
dc.identifier.journalResearch Involvement and Engagementen
dc.description.fundingHRB Health Research Boarden
dc.description.provinceConnachten
dc.description.peer-reviewpeer-reviewen
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