Aim

Clinician-led diabetes education is a fundamental component of care to assist people with Type 1 diabetes self-manage their disease. Recent initiatives to incorporate a more patient-centered approach in diabetes education have included recommendations to make it more individualized. Yet there is a dearth of research that identifies patients’ perceptions of the deficiencies of diabetes education. We aimed to explore the experience of diabetes education from the perspective of young adults with Type 1 diabetes.

Methods

We designed a self-reported survey for Australian adults 18-35 years with Type 1 diabetes. Participants (n=150) were recruited by advertisements through diabetes consumer-organizations. Respondents were asked to identify sources of and rate aspects of diabetes education. To expand on the results of the survey we interviewed 36 respondents. Quantitative data was analyzed using SPSS 20; qualitative data using NVivo 9.

Results

Survey: Many respondents (60%) were happy with the amount of continuing diabetes education that they receive from their healthcare team; 96.7% sought further diabetes education; 73.3% sourced more diabetes education themselves than that provided by their healthcare team; 80.7% referred to diabetes organization websites for further education; and 30.0% used online chat-rooms and blogs for education.

Interviews: The three key themes that emerged from the interview data were: deficiencies related to the pedagogy of diabetes education; knowledge deficiencies arising from the gap between theoretical diabetes education and the practical reality; and the need for and problems associated with autonomous and peer-led diabetes education.

Conclusion

Our findings indicate that there are opportunities to improve clinician led-diabetes education, to improve patient outcomes by enhancing autonomous health-literacy skills and to incorporate peer-led education and support with clinician-led education. The results provide evidence for the potential value of patient engagement in quality improvement and health-service re-design.