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#ADSADEA2015 – Day One: Shining a light on young people with diabetes

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Day One of the official ADS/ADEA conference has kicked off. I was reminded of how exhausting and overwhelming these conferences can be. There is just so much information that gets hurled at you to remember and use in practice. So here’s my recap for most of the day. 

I was lured into a 7am breakfast workshop to celebrate Dose Adjustment for Normal Eating in Australia (OzDAFNE) turning 10 years old. The history of the DAFNE program is an interesting one. Originating from Germany, it was initially looked down upon by diabetologists and healthcare professionals alike. Even with randomised control trials (gold standard in research) demonstrating the benefits in lowering HbA1c in participants, DAFNE was met with resistance. Slowly over time as more training doctors and healthcare professionals sat in on the five-day course, they realised how valuable DAFNE is not only to people with diabetes but also for themselves. While one participant described DAFNE as learning how to “manage diabetes around lifestyle and not the other way around”. Healthcare professionals get to see what living with diabetes is really like. Currently, DAFNE is getting a make over to be more literacy and numeracy friendly for participants.

Throughout the rest of day I felt like I was following Associate Professor Vibeke Zoffman from Denmark. Vibeke spoke extensively about empowering people with diabetes through Guided Self-determination theory (GSD). Despite the term empowerment being coined and recognised 25 years ago, it hasn’t been embraced in practice. Most of what Vibeke shared from her experiences and research is that a collaborative approach between people with diabetes and healthcare professionals needs to be undertaken. For people with diabetes, once their emotional problems have been unpacked, the numbers (BGLs and HbA1c) usually follows. In her practical workshop, we were privileged to check out the GSD reflection sheets used in her approach. These sheets covered many psychosocial aspects of living with diabetes in various formats from filing in sentences to drawing their feelings.

By far, my favourite symposium of the day belonged to the Australian Centre of Behavioural Research in Diabetes (ACBRD) on better understanding the needs of young people with diabetes. The research presented was of no surprise to most of us.

  • 1 in 4 young people with diabetes either experience diabetes distress, depression or both. Diabetes distress and depression are very different to each other. The former is the emotional response to living and managing diabetes, while the latter are feelings about life in general, which impacts daily function. – Virginia Hagger
  • Diabetes clinics need to shift their focus from numbers to what is happening in the life of the person with diabetes for successful diabetes management. – Associate Professor Vibeke Zoffman
  • Over 32,000 young people aged 18-39 years live with type 2 diabetes in Australia. And many of them are disengaged from current diabetes support services. Perhaps it’s the lack of intensive clinical management (clinical inertia) for young people with type 2 diabetes. Or maybe the lack of relevant resources and support services specific for this group? – Amelia Lake
  • 1 in 3 young people with type 2 diabetes thought that healthcare professionals do not understand their needs and concerns. It is also difficult for young people with type 2 diabetes to find a safe online space to share experiences and information. They face stigma from the general public, healthcare professionals, and even peers with type 1 diabetes. – Dr. Jessica Browne

So what can healthcare professionals or the diabetes community do to change things? The most important thing is to be mindful and never assume. Be mindful of the language you use around people with diabetes; be mindful of the person behind the condition; never assume that people have the necessary knowledge and skills for diabetes management.

What’s frustrating for me is that these themes around listening to and involving people with diabetes in their management are constantly being highlighted in these conferences. But are they being acted upon in practice? Do healthcare professionals need more support in embracing the needs of young people with diabetes?

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Pancreatically challenged, diabetes advocate, PhD student and dietitian - working to positive changes within the diabetes community and healthcare setting. Although diagnosed at age of 19 with T2DM, the type of diabetes I have is under constant debate. Finally pumping as of March 2014.

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