The lessons we need to learn about the role of stigma
By Dr Elizabeth Holmes-Truscott and Prof Jane Speight
Public health campaigns are an important tool for health promotion. Unfortunately, research shows that they are not always effective. Worse yet, they can cause harm.
Diabetes campaigns are often designed to focus on how serious the condition is. Or, to show rising numbers of people living with the condition. Or, the actions that individuals can take to reduce their risk of diabetes or its complications. Such campaigns can attract criticism from people living with diabetes, and those working in diabetes. Typically, this is because they use fear appeals or scare tactics. They may include stigmatising messages and shocking imagery. Or, they convey ideas about diabetes that are overly simplistic or inaccurate. For example, that too much sugar causes diabetes and its complications. Such campaigns do not change behaviours and may actually do harm. Stigmatising campaigns can have negative impacts on the health and well-being of people living with diabetes. They may also harm public and political support for diabetes.
Yet, there have been no published evaluations of diabetes campaigns.
Campaigns past
Our latest paper explores some potential positive and negative impacts of past Australian National Diabetes Week campaign videos. We tested eight brief campaign videos broadcast between 2005 and 2015. The videos varied in their aims and messages. Most focused on risk factors for type 2 diabetes, calling for people to get screened, move more or measure their waistband. Several included graphic images of complications. Two called on the Australian Government for greater funding and action.
In total, 510 adults with diabetes and 1,023 adults without diabetes took part. We assigned them, at random, to watch one of the eight campaign videos or to a control group. Afterwards, we measured their attitudes to diabetes, confidence and motivation to form healthy habits. We also asked what they thought of the videos. For example, they rated how much the video “stigmatises” or “blames people for having diabetes”.
We found little difference in attitudes, motivation, or confidence between those who watched the videos and those in the control groups. It is possible that the videos may have had more impact during their initial broadcast. This is because people may have seen them, and other campaign materials, multiple times. The campaigns might also have had other benefits that we didn’t measure. For example, increasing donations or political attention. But, if they did, such evaluations were not published.
Importantly, our findings show the potential for past Australian diabetes campaigns to have caused harm, in the form of diabetes stigma. Overall, 15% of participants reported the videos were stigmatising. This was the case whether they had diabetes or not. This group reported more misconceptions about diabetes. They were also less likely to believe diabetes to be serious. Those without diabetes who found the videos stigmatising also reported less motivation for improving their general health but higher motivation for reducing their risk of diabetes. However, this was not associated with confidence to perform healthful behaviours. Research shows that increasing motivation, without increasing the confidence to reduce that risk, increases anxiety.
Campaigns present
In recent years, we have noticed a shift in diabetes campaigns in Australia and elsewhere. Increasingly, campaigns represent the lived experience of diabetes, and use positive framing. They advocate for greater community and government support, rather than focusing on personal responsibility. For example, during National Diabetes Week 2024, Diabetes Australia‘s campaign theme is fair access to diabetes technologies. Campaign materials include videos of people living with diabetes talking about what access means to them. This campaign responds to a groundswell of community advocacy around the globe. Other recent campaigns in Australia (and elsewhere) have highlighted the relentless nature of diabetes. In 2021 and 2022, Diabetes Australia called for an end to blame and shame in the ‘Heads up on diabetes stigma’ campaign. These campaigns are far more positive and supportive than those tested in our study. That said, we are not aware of any published evaluation of the impact of these campaigns on people with diabetes or public perceptions.
For all the supportive campaigns listed above, there are just as many relatively recent examples that cast blame and incite fear. Interestingly, none of the above campaigns focus on the promotion of individual health behaviours.
Campaigns future
So, there remains an enduring challenge. How do we effectively advocate for risk reduction, behaviour change, and government action, without causing harm? While the campaigns tested in our study are dated, the findings remain relevant today and for the future. We can learn from more advanced campaign evaluations in other health areas. We also need further research into diabetes campaigns. Our research calls for future campaigns to be evidence-based, involving rigorous development and testing processes. Negative impacts need to be considered. Importantly, people with diabetes must be involved throughout the design and evaluation process.
Earlier this month, the findings of the Parliamentary Inquiry into diabetes in Australia were published. We have blogged a summary of the 23 Inquiry recommendations and our reflections. Two recommendations called for public health campaigns to raise awareness of diabetes (Box 1). Campaigns would focus on prevention, early signs, and the management of all diabetes types. We support the development of evidence-based, ethical, and acceptable campaigns. Diabetes campaigns that work, without harm. Unfortunately, the Inquiry report did not discuss the potential for diabetes campaigns to stigmatise. Nor the need to assess the impacts of campaign before they are shared.
Box 1. Inquiry recommendations calling for public health campaigns
Recommendation 9: The Committee recommends that the Australian Government implements a national public health campaign to increase public awareness of the early signs of all forms of diabetes mellitus.
Recommendation 11: The Committee recommends that the Australian Government implements a national public health campaign to increase awareness of the importance of prevention, identification of early signs, and good management of all forms of diabetes mellitus.
Our call for action
Diabetes campaigns can promote the health and well-being of people affected by or at risk of diabetes. But, they can also spread stigma and cause harm. We call for diabetes campaigns that offer support, not stigma.
In relation to Inquiry Recommendations 9 and 11, we call on the Australian Government and anyone implementing diabetes campaigns to:
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- Invest the time and resources to rigorously develop and evaluate campaigns.
- Take the Pledge to end diabetes stigma: commit to using accurate, respectful messaging and challenging fear-based communications.
- Involve people with diabetes, from beginning to end.
- Learn from campaigns past, to ensure a brighter future.
- Draw on learnings from other health areas and from behavioural and communications science. For example, there is an evidence base related to campaigns focused on conditions such as obesity, cancer, mental health and HIV.
- Measure what matters. Ensure evaluation of intended and unintended consequences.
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NB. We thank Diabetes Victoria for funding our study of past National Diabetes Week campaign videos.
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