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'Join Us on Our Journey' – Developing a new model of care for children and young people with Type 1 diabetes.
April 2009 – April 2012
Background
NHS Diabetes commissioned Leeds Metropolitan University to undertake a research project called 'Join Us on Our Journey', to look at Type 1 diabetes service provision for children and young people across the Yorkshire and the Humber region. The original idea for 'Join Us on Our Journey' was developed by exploring the experiences of children and young people with Type 1 diabetes, their parents and professionals working in the field; the model incorporates the phrase ‘bus stops’ which was created by children and young people to describe the various points along their diabetes journey where they felt they needed to ‘get off the bus’ to access support (medical, emotional, social or educational) from different professionals and organisations.
Aim of this project
- To develop and pilot a model of care that will deliver the aspirations of the policy document, ‘Making Every Young Person with Diabetes Matter’.
- The ‘Join Us on Our Journey’ model will be used to improve the care provision for children and young people with Type 1 diabetes in England.
Methodology
Process mapping, using talking (focus) groups and individual interviews, is the main methodological approach being used and is based on three key questions:
- What exists at the moment?
- What is missing?
- What needs to happen at every stage of the journey within the diabetes care pathway for children and young people?
There are 11 ‘Bus Stops’ being used that represent the different stages along the child’s and young person’s diabetes journey and represent the main points for discussion in the talking groups; all talking group members are asked the three key questions outlined above in relation to each ‘bus stop’.
There are 40 children and young people (four age groups (6-11, 12-14, 15-17, 18-25); 10 children and young people per group), 40 parents and 10 professionals participating in each of the nine research sites, totalling 810 participants.
Outcomes
Early findings show that there are certain areas of a child’s and a young person’s care pathway which needs to be addressed; in particular:
- Treatment
- Communication
- Psychosocial support
- Education
- School
- Transition
Outputs
- Link to: Join Us On Our Journey (PDF 726KB)
- A final report will be produced and will be used to disseminate the findings in relation to a model of care for children and young people with Type 1 diabetes based on the policy document, Making Every Young Person with Diabetes Matter (PDF 1.2MB)
References
Department of Health (2007) 'Making every young person with diabetes matter’.http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_073674
Further information
Leeds Metropolitan University: Getting Sorted website:
http://www.leedsmet.ac.uk/gettingsorted/61165D76C64C4A85BA0548AC0FE6DCB3.htm
