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

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    Authors
    O’Hara, Mary Clare cc
    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
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    Issue Date
    2017-10-23
    Keywords
    DIABETES MELLITUS
    BEHAVIOUR CHANGE
    
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    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
    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
    ISSN
    2056-7529
    Sponsors
    Health Research Board (Ireland), Health Research Award (HRA-HSR-2013-316).Novo Nordisk Ireland.
    ae974a485f413a2113503eed53cd6c53
    10.1186/s40900-017-0068-9
    Scopus Count
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    Galway University Hospitals

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