Vivien Coates1, Geraldine Horigan2, Marian Carey3,4, Mark Davies5. 1. Western Health and Social Care Trust, Ulster University, Coleraine, UK. 2. NICRS Ltd., Altnagelvin Area Hospital, Glenshane Road, Londonderry. 3. Diabetes Research Centre, University of Leicester, Leicester. 4. Kairos Communications & Research Ltd. 5. Belfast Health and Social Care Trust, Belfast, UK.
Abstract
AIM: To explore the reasons young people with type 1 diabetes decline Structured Diabetes Education from the perspectives of the young people themselves, their parents and diabetes educators. BACKGROUND: Structured Diabetes Education programmes that are evidence based and quality assured are a key component to empowering people with diabetes to self-manage effectively. However, research reveals that uptake of structured education programmes is disappointingly low. DESIGN: Qualitative cross-sectional study involving participants from Northern Ireland and England. METHODS: Twenty young people with type 1 diabetes (13-22 years) who had declined Structured Diabetes Education within the past 2 years, 17 parents of a young person with type 1 diabetes and 16 diabetes educators participated in semistructured interviews and focus groups. RESULTS: Three main themes emerged from across all three groups: timing, access and communication issues. In addition, a lack of understanding by the referrer was cited by some young people and their parents. Diabetes educators were sympathetic and understood many of the reasons why Structured Diabetes Education was declined. Solutions were proposed to overcome expressed barriers. CONCLUSIONS: Although the expressed reasons for declining might suggest that the young people simply did not prioritise education, this study adds a more nuanced scenario to the debate. The interviews revealed the tensions that exist between people's daily commitments and their need to self-manage their diabetes. The young people and their parents must be given a much stronger sense of the importance of Structured Diabetes Education and ways to accommodate attendance must be sought. Diabetes educators must be able to better promote the importance of Structured Diabetes Education. RELEVANCE TO CLINICAL PRACTICE: As optimal glycaemic control is so vital for long-term health, there is an urgent need to understand how to respond more fully to the needs of young people who have type 1 diabetes.
AIM: To explore the reasons young people with type 1 diabetes decline Structured Diabetes Education from the perspectives of the young people themselves, their parents and diabetes educators. BACKGROUND:Structured Diabetes Education programmes that are evidence based and quality assured are a key component to empowering people with diabetes to self-manage effectively. However, research reveals that uptake of structured education programmes is disappointingly low. DESIGN: Qualitative cross-sectional study involving participants from Northern Ireland and England. METHODS: Twenty young people with type 1 diabetes (13-22 years) who had declined Structured Diabetes Education within the past 2 years, 17 parents of a young person with type 1 diabetes and 16 diabetes educators participated in semistructured interviews and focus groups. RESULTS: Three main themes emerged from across all three groups: timing, access and communication issues. In addition, a lack of understanding by the referrer was cited by some young people and their parents. Diabetes educators were sympathetic and understood many of the reasons why Structured Diabetes Education was declined. Solutions were proposed to overcome expressed barriers. CONCLUSIONS: Although the expressed reasons for declining might suggest that the young people simply did not prioritise education, this study adds a more nuanced scenario to the debate. The interviews revealed the tensions that exist between people's daily commitments and their need to self-manage their diabetes. The young people and their parents must be given a much stronger sense of the importance of Structured Diabetes Education and ways to accommodate attendance must be sought. Diabetes educators must be able to better promote the importance of Structured Diabetes Education. RELEVANCE TO CLINICAL PRACTICE: As optimal glycaemic control is so vital for long-term health, there is an urgent need to understand how to respond more fully to the needs of young people who have type 1 diabetes.