Meet the People Working to Dismantle Diabetes Stigma
By Matthew Garza
Learn more about the PsychoSocial Aspects of Diabetes (PSAD) Study Group and the professionals and people with diabetes making sure we prioritize more than just the biomedical when it comes to diabetes.
If the first things you think about when you hear the words “diabetes care” or “diabetes management” are medications, healthcare appointments, or complications, you’re not alone. But this is only half the story.
Also very critical to life with diabetes are the psychosocial and behavioral aspects of the condition.
“Put simply, this is about how people think, how they feel, and what they do – both about diabetes and in other aspects of their everyday lives – this is at the heart of all diabetes care,” said Professor Jane Speight.
Speight is the foundation director of the Australian Centre for Behavioural Research in Diabetes, a partnership between Diabetes Victoria and Deakin University; she’s also the chair of the PsychoSocial Aspects of Diabetes (PSAD) Study Group.
The PSAD Study Group is a professional group of researchers, healthcare professionals, and people with diabetes that aims to foster communication between experts in the field, improve the quality of psychosocial research in diabetes, and help disseminate effective diabetes care.
The PSAD acts as a reference group for the European Association for the Study of Diabetes (EASD) in matters related to the psychological, social, and behavioral aspects of diabetes. It was founded in the mid 1990s by Professor Frank Snoek, and celebrated its 25th anniversary in 2020 with a special issue of Diabetic Medicine that covered advances in research over that quarter of a century with topics ranging from the psychological (e.g. depression, diabetes distress, disordered eating, fear of hypoglycemia, quality of life) to the behavioral (e.g. medication taking, sleep, diabetes self-management education programs, diabetes technologies and behavior change generally) to the social context (e.g. family relationships, social stigma).
Speight explained that these topics are often overlooked in clinical care and research – but if we really want to understand how to improve both health and quality of life, we need to consider more than biomedical treatments and technologies. People’s thoughts, self-talk, emotions, frustrations, worries, challenges, guilt, sadness, anger, as well as the judgment and the stigma they may face (and how all of this is affecting them), can make or break a person’s capacity to self-manage this complex condition.
Research supports Speight’s view, showing that these factors can have major impacts on the mental and physical health of people with diabetes and their quality of life. Although these aspects have not always been given the attention they deserve, Speight and the other members of the PSAD Study Group are working to change that to better help people with diabetes.
For example, in a robust response to The Lancet Commission on Diabetes, they highlighted that data on diabetes distress are needed to improve the quality of diabetes care. In a similar way, they also published their response to a Consensus Report on the definition and interpretation of remission of type 2 diabetes, indicating that a psychosocial perspective is needed.
One member of the PSAD study group is Dr. Debbie Cooke, the group’s honorary treasurer, who has been living with diabetes for several decades now after being diagnosed at the age of seven. Cooke is a postgraduate research director at the School of Health Sciences, Faculty of Health & Medical Sciences, University of Surrey in the UK and she says the unique connections and incredible people are what drew her to the PSAD Study Group.
“There’s not many people working in this area, in psychology and diabetes,” said Cooke. “That’s why me and Jane [Speight] both work for PSAD. Part of our mission is to strengthen the networks and bring the researchers and the health professionals together, to increase knowledge in this area and increase the impact of the research. But it’s hard to do that when the funding opportunities are not there”.
She and her PSAD colleagues have highlighted just how little research funding is dedicated to exploring how psychosocial factors influence the lives of people with diabetes and the management of their condition. That’s why it’s important that researchers and healthcare professionals have this network to exchange ideas, collaborate, and disseminate the latest findings. And by making sure that people with diabetes also have a seat at the table, the value of the group is only strengthened.
“Another key goal of the group is supporting early career researchers and clinicians. To really ensure they have the skills and support to stay working in this area, as well as spreading knowledge about effective interventions to improve clinical care or self-care,” said Cooke.
The PSAD Study Group has been successful at bringing greater attention to this area of diabetes research and care. Just taking a look at a few of the studies that the group has been involved is illuminating.
For example, the Diabetes Attitudes, Wishes and Needs (DAWN) study and its follow-up DAWN 2 study were both done through collaborative partnerships with the PSAD group. The DAWN studies showed that psychosocial issues were having a clear negative impact on diabetes self-management. They also showed that while diabetes distress and depression are common, healthcare professionals rarely assess or address these issues in clinical practice. And finally it highlighted that the current healthcare systems cannot adequately support people with chronic conditions like diabetes. But people who have access to, and strong communication with, a comprehensive care team fare better.
Results from the DAWN study have helped inform interventions to reduce diabetes distress and the interactions between clinicians and people with diabetes. And the more these types of studies can be funded, the more information we have to inform healthcare professionals about how to improve care. That’s why it's so vital that we start paying more attention to this area of research.
“We need to weave [the psychosocial aspects] into our medical curriculum training and healthcare professional training,” said Cooke. “And support people with diabetes to bring [these issues] up, even if the healthcare professional isn’t, to bring attention to it.”
Speight and Cooke believe that the psychosocial aspects of diabetes are gaining greater recognition and will be prioritized more in the future – by both policy makers and funding bodies, as well as by healthcare professionals and researchers. They also hope that people with diabetes, healthcare professionals, and researchers in this field continue to make connections with other like-minded individuals and are inspired by the work of their peers.
Speight recalled how the same people she met in the PSAD Study Group over two decades ago as an early career researcher are now seniors in the field. “Many of us are still collaborating… and I think that’s really strengthened our work – that we’re working together, not just in isolation,” she said. “I really want that for the next generation as well.”
Despite its origins as a European Study Group, the PSAD now has over 300 members on five continents. So, neither location nor profession are barriers to membership. And just last year, the group hosted its inaugural Research Accelerating PsychoSocial Innovations in Diabetes (RAPID) conference in Copenhagen. With over 130 delegates from 17 countries including researchers, healthcare professionals, and people with diabetes – the conference gave people the chance to learn about research in the field and connect with other professionals and people with diabetes.
To learn more about the PSAD Study Group, including how to become a member, visit their website here. To read more about research in this area, check out diaTribe’s article “Prioritizing Mental Health in Diabetes Care.”