Deakin takes the Pledge to end diabetes stigma and discrimination

Research news

03 November 2023

Summary:

  • On behalf of Deakin University, Vice-Chancellor Professor Iain Martin has signed the Pledge to end diabetes stigma and discrimination.
  • Deakin has a longstanding and successful partnership with Diabetes Victoria – the peak body representing people affected by diabetes in Victoria.
  • As a result of that partnership, Deakin’s world-leading researchers have demonstrated the extent and impact of diabetes stigma and discrimination, which led to the development of the international consensus to #EndDiabetesStigma.

When Julia was seven years old, they were diagnosed with type 1 diabetes.

Almost fifteen years later, when working their first office job, they quietly excused themselves to buy a snack to treat hypoglycaemia (low blood glucose), a common side-effect of the insulin needed to manage type 1 diabetes.

‘When I returned, I discovered the office doors were locked behind me. I stood there shaking and feeling faint while waiting for someone to open them,’ she says.

‘Eventually, the General Manager came out, berated me for interrupting the team and called me unprofessional. I was stunned, and still not able to treat my sugar levels.’

Julia’s team was aware they had diabetes, however when they explained ‘this wasn’t a snack for fun, but a medical emergency’, they were ignored.

‘I think this was the first time I had ever cried at work,’ Julia says.

300 Australians develop diabetes every day

According to Diabetes Australia, 1.4 million people around the country have diabetes, and more than 300 Australians develop diabetes every day. That’s one person every five minutes.

Research conducted by the Australian Centre for Behavioural Research in Diabetes (ACBRD), within Deakin University’s School of Psychology and Institute for Health Transformation, shows around four in five people with diabetes have experienced some form of diabetes stigma. Up to one in three have experienced discrimination due to their diabetes.

Diabetes stigma refers to the stereotypes, blame, judgment, or prejudice that people with diabetes experience due to their condition. It can impact their mental and physical health, their self-care and self-esteem, as well as their social and professional lives.

For example, diabetes stigma can be associated with increased depressive and anxiety symptoms and lower self-esteem. It can also be associated with increased concealment of diabetes and its management (for example, not checking glucose levels in public), higher average blood glucose, and disengagement from the healthcare system.

Pledge aims to end diabetes stigma

Deakin’s Vice-Chancellor, Professor Iain Martin, recently signed a pledge that the University will, from here on, contribute pro-actively to bringing an end to diabetes stigma and discrimination.

The Pledge was developed by an expert panel of 51 individuals from 18 countries, across all seven regions of the world. The panel comprises individuals with lived or family experience of diabetes and professionals in research or clinical fields, who reviewed the evidence, achieved consensus on recommendations and the Pledge, and unanimously endorsed the Pledge.

Signing the pledge means Deakin as a whole (including its staff and students) is committed to:

  • respecting people with all types of diabetes
  • recognising diabetes stigma exists and has harmful impacts
  • acknowledging and challenging our own prejudices about people with diabetes
  • using accurate, respectful, inclusive, non-judgemental, and strengths-based language, messaging and imagery when communicating with or about people with diabetes
  • avoiding and challenging fear-based messaging and imagery
  • condemning discrimination due to diabetes and advocating for equal treatment and support for people with diabetes
  • encouraging initiatives, policies and laws that promote equity for all people with diabetes.
  • Professor Jane Speight, ACBRD Foundation Director and co-leader of the international consensus to end diabetes stigma said that signing is a critical step in reducing diabetes stigma.

    ‘This Pledge is important for organisations such as Deakin. Universities are communities. Yes, it’s a place where we undertake research into diabetes, but it is also a place where we teach the next generation of researchers, health professionals, employers and leaders,

    ‘It is also an employer of staff with diabetes, and responsible for the care of students with diabetes. The Pledge offers an opportunity to realise the complexities of what it takes to truly support people with diabetes and to make a commitment to do just that.’

    ‘I feel like I’m missing out’: some health professionals contribute to diabetes stigma

    Michael has type 2 diabetes. At his first appointment with an endocrinologist, ‘he told me I was “fat, needed lap band surgery and not coping” with my condition, without asking about the hard work I’d been doing to manage my diabetes’.

    During family gatherings, Michael is used to declining sweet foods to manage his condition.

    ‘I feel rude not taking cake and chocolate when I’m offered it, but I turn it down because my doctors have told me I’m not meant to eat it. It’s a catch 22 because I feel like I’m missing out as well.’

    ‘All the medical professionals I see have different, and often negative, opinions. It makes it hard to get the help I need.’

    Research from the ACBRD found 55% of respondents say some people assume it’s their own fault they have type 1 diabetes, and 52% of people with type 2 diabetes say people assume they are overweight or have been in the past.

    Dr Elizabeth Holmes-Truscott, a Senior Research Fellow at the ACBRD, and co-lead of the international consensus, explains the importance of everyone holding a mirror up to reflect how we may have been contributing to diabetes stigma in the past.

    ‘As a woman who experienced diabetes in pregnancy, this work is important to be me both professionally and personally,

    ‘Despite my work in the field, I was embarrassed by my diagnosis, blamed myself, and received unsolicited judgments and assumptions. I took the Pledge because people will diabetes of any type deserve to live without stigma,’ Dr Holmes-Truscott says.

    ‘Taking the pledge is not just ticking a box. It means recognising our past attitudes and behaviours, and taking a public stance to acknowledge the complexities and challenges of this condition, and to be allies of people living with all types of diabetes. We all need to hold that mirror up,’ Professor Speight adds.

    ‘This is not about blaming and shaming ourselves. It’s about realising where we need to make improvements for the future. Only then will we be able to bring an end to diabetes stigma and the harms it inflicts.’

    Advice on how to avoid diabetes stigma

    Julia says that, because diabetes is treatable, and not always obvious when you look at someone, it’s easy for people forget about it. But that doesn’t mean you need to offer health advice.

    ‘Often, all a person living with diabetes needs is space for them to look after themselves, and maybe even an offer of a snack. We don’t need home remedies or lectures—we know what we’re doing.’

    Michael also shares that lots of people are still learning how to support people with diabetes, and it’s okay not to know everything.

    ‘I went to my doctor, was experiencing low blood glucose and didn’t have any jellybeans on hand. He noted that he should probably have some jellybeans in his office as someone who treats people with diabetes. So, he’s still figuring it out too.’

    ‘Every person with diabetes is different, so I’d encourage people to be understanding of that. Don’t put us all in the same bag.’

    Take the Pledge: Contribute to a world without diabetes stigma

    To date, over 2,000 individuals and over 240 organisations across the world, in more than 95 countries, have taken the Pledge. To join this global effort, you can sign the pledge as an individual and/or on behalf of an organisation and make a difference!

    The beginning of the end of diabetes stigma will be celebrated with a global launch of the Pledge on World Diabetes Day (Tuesday 14 November, 6pm AEDT), live in Melbourne and live-streamed around the world. Register for the event today.

About the researchers

Professor Jane Speight

Professor Jane Speight is the Foundation Director of the Australian Centre for Behavioural Research in Diabetes (ACBRD), established in 2010 as a partnership for better health between Diabetes Victoria and Deakin.

  • Among the top 0.1% of researchers worldwide for type 1 and type 2 diabetes and recognised as Australia’s leading behavioural diabetes researcher, according to ExpertScape.
  • Investigator on several trials and research projects, attracting funds of over $90 million, with $82 million achieved since 2013.
  • Published 260+ articles in peer-reviewed journals, two books, several book chapters, two position statements, one international guideline and 220+ conference abstracts.
  • Chair of international PsychoSocial Aspects of Diabetes Group since 2020.
  • Had a profile published by Lancet Diabetes & Endocrinology – the world-leading diabetes, endocrinology, and metabolism journal.

Find out more on Professor Speight’s Deakin profile.

Connect with Professor Speight on Linkedin.

Dr Elizabeth Holmes-Truscott

Dr Elizabeth Holmes-Truscott is a senior research fellow at the ACBRD and has expertise in the psychosocial aspects of diabetes, including diabetes stigma.

  • Behavioural Platform Lead of the Australian Centre for Accelerating Diabetes Innovations (ACADI; Medical Research Future Fund (MRFF) funded virtual collaborative bringing together more than 70 partners).
  • Investigator on research projects attracting funds of over > eight million, and authorship of >50 peer-reviewed journal articles.
  • Stigma expert committee member of The Obesity Collective.
  • Joint-winner of the 2022 IHT EMCR Future Leaders Group Award for Excellence in Research Impact for her work in diabetes stigma. Awarded Deakin’s Faculty of Health Dean’s Research Postdoctoral Fellowship Coordinated the National Diabetes Services Scheme Starting Insulin (type 2 diabetes) National Priority Area.

Find out more on Dr Holmes-Truscott’s Deakin profile.

Connect with Dr Holmes-Truscott on LinkedIn.

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Deakin researchers have led an international consensus on the evidence and recommendations to end diabetes stigma and discrimination.

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Deakin researchers have led an international consensus on the evidence and recommendations to end diabetes stigma and discrimination.

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