Summary
Talking Type 1 Diabetes Burnout is the first guided self-help book for people who live with type 1 diabetes and have diabetes-specific psychological issues. It was co-produced by a diabetes specialist clinical psychologist and people living with type 1 diabetes around the world. It is available free to patients in Wales with type 1 diabetes. Feedback from diabetes staff has been positive, and there has been significant interest and demand from both services and people living with type 1 diabetes outside Wales. Talking Type 1 Diabetes Burnout aims to meet significant unmet psychological need and lack of adequate staffing.
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Method
The idea for the Talking Type 1 range was conceived of by a Clinical Psychologist who felt frustrated at the lack of adult diabetes psychology provision, both locally and across the UK. It was hoped that the books would fill gaps in services where diabetes psychology was lacking and give diabetes teams the confidence and tools to support people with lower-level psychological issues. An early draft version of Diabetes Burnout was ‘pitched’ to the clinical lead for diabetes in Wales, who obtained slippage money from the All Wales Diabetes Implementation Group to fund further development, design and printing of the resource. It was developed with colleagues who had previously been involved with the commissioning and development of educational resources for people living with diabetes. Funding for development of subsequent resources has been obtained from the All Wales Diabetes Implementation Group budget. Co-production with people living with Type 1 diabetes has been a key aspect of the resource development, and views of people living with Type 1 diabetes have been sought and used at all stages of the production process. The second title in the Talking Type 1 range is Not OK with Needles?
Results
The resources have been distributed across all seven NHS health boards in Wales and are available to all adults and adolescents living with Type 1 diabetes. Feedback from teams indicates that the resources are being used regularly and are particularly useful in starting and structuring conversations between diabetes nurses and their patients. The initial stocks (3,000 printed copies) of Diabetes Burnout have been used and additional print runs have been organised. All people with diabetes who completed an online evaluation of the range reported that the resources had reduced the impact of the problem (either diabetes burnout or needle phobia) in their lives. This was assessed by asking people to give a percentage score for impact of the problem pre and post reading the resource. There was a statistically significant difference between the problem impact scores noted before reading the resource (M=48.8, SD=22.4) and after reading it (M=26.3, SD=14.8) t(5)=-5.49 p<.01.
All people with diabetes who completed an online evaluation reported that the resources had increased their confidence in their ability to manage the problem. Their confidence percentages were noted pre and post reading the resource. There was a statistically significant increase in confidence scores taken prior to reading the resource (M=58.5, SD=20.7) and afterwards (M=81, SD=6.6) t(5)=3.13 p<.05. The survey participants were asked what changes they had instigated as a result of reading the resources. Their responses included: “Reassuring myself that highs and lows are part of my diabetes”; “Exercising regularly again”; “Little steps and being kind to myself”; “Some time out. Trying to accept that it’s okay not to be okay sometimes”; “To stop beating myself up when I get it wrong. To accept this is a normal part of the process. To take time to self-care properly”. While improved diabetes management through reduced HbA1c was not measured as part of the evaluation process, one resource user spontaneously reported that her HbA1c had reduced by 2% (approximately 22 mmol/mol) purely as a result of changes in her thinking and diabetes management instigated by reading the Diabetes Burnout resource.
Sustainability and Spread
Annual funding has been secured for three years that will enable the project to continue. Further funds are likely to be forthcoming, particularly as the costs are beginning to be offset by external sales. The first sale to an external agency has been agreed, and talks are in progress with multiple other agencies. A QR code has been embedded in the design of all resources produced from 2020 onwards, to ensure maximum uptake of the online evaluation questionnaire for resource users. The resources are being referenced in national documents across Wales and have been included in national audits as examples of psychological support being used in services. A page has been established on the NHS Wales diabetes Sharepoint website in order to keep diabetes healthcare professionals updated about developments in the range, as well as provide ongoing guidance and support. A Twitter account has been set up to promote the books globally (@TalkingType1), and they have a section on the newly launched UK Diabetes Psychology website, diabetespsychologymatters.com. The lead author has presented at multiple national conferences to launch and promote the range, obtain staff feedback and provide guidance on using the resources with patients. Launch events were filmed and put on YouTube to provide easily accessible training resources for staff. The lead author also delivered training to practice nurses to ensure uptake in primary care.
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