In Depth: Butterfly’s Head of Research & Policy on the new Community Insights Report

Dr Sarah Squire 00:10
Eating disorders are not and never are a lifestyle choice. Almost 70% of us think that’s the case, but it’s not true. One in six people perceive eating disorders as a sign of weakness. That is also not the case, one in seven people agree that people with eating disorders could just snap out of it. We know that’s not the case. These views are held by a minority of people. But we really need to reduce that minority.

Sam Ikin 00:35
Those figures that you just heard it from a survey commissioned by butterfly to get a better idea of what Australians know and think about eating disorders and body image issues. Dr. Sarah squires butterflies head of knowledge research and policy, she spearheaded the brand new community Insights report. The last one was done in 2020. And things have changed in that time, mostly for the better. And we have the great privilege of having Dr. Squire as our guest on this episode of Let’s Talk in depth.

Dr Sarah Squire 01:03
So the committee Insights report is really a bit of a stocktake on what the general public thinks, and thinks it knows about eating disorders, it also captures levels of stigma, including self stigma, and it also gives us a sense of prevalence in terms of experiences of disordered eating. So it really tells us what the average person on the street thinks, and believes, and perhaps acts in relation to eating disorders and body image concerns. And the first time I did this report was three years ago, and before that time, no one had done a report like this before. So being butterfly, we like to identify gaps, and then fill them. So that’s why we started with the first survey. And now we’ve just done the second survey.

Sam Ikin 01:41
Why do we need to know all that stuff?

Dr Sarah Squire 01:43
I guess like a lot of organisations, Butterfly knows a lot about the community that engages with us. So that’s primarily people with lived experience, and their carers and friends and family members. We have a lot of people that follow us on social media. So I know a lot about what they think. But we really did not know until recently what the average person in the Australian population thinks. Now the reason that’s important is because we don’t just want to speak to people who already know us, we want to speak to everyone, because we know that eating disorders occur everywhere, all across Australia, in all different types of communities across all different types of age groups and other demographics. So if we really want to affect change, we actually need to know what everyone knows. So we know what we need to educate them about.

Sam Ikin 02:26
You said that the last one came out about three years ago. So why is this one coming out now?

Dr Sarah Squire 02:32
I guess with Butterfly, we seek to influence across a range of domains. So that includes levels of knowledge levels of stigma, and we need to know that in order to effectively develop and target. So I’m into health promotion, and also our advocacy campaign. So we did the first survey just over three years ago now towards the end of 2020. And then we published that in 2021. And then we managed to get some funding through a private donor to fund a second version of the survey, which we undertook late last year, and now we’re releasing this year. And that’s really giving us up to date insights around what’s changed in three years and what hasn’t changed. And therefore, where we should be focusing our work three years.

Sam Ikin 03:12
I’m very keen to dive into what some of the results were. But before we go into that, tell us how to gather this kind of information from people?

Dr Sarah Squire 03:22
Yeah, it’s not easy. It’s relatively easy for any organisation to survey the people that already know them. And that’s what butterfly and many other mental health organisations do. So with this report, we actually commissioned a social research company called bury it to undertake this research. And Varian actually did the first survey for us. And at the time of that first survey, I worked with them to develop the questionnaire, and the methodology for some qualitative interviews are conducted the first time around. And those interviews were really important because they informed us and telling us what we needed to collect, and also how to interpret that data.

Sam Ikin 03:55
How do you find people to do it? Do you just randomly approach people?

Dr Sarah Squire 03:59
I mean, we don’t do vox pops in the street. That might take a while because over 3000 people responded to the survey. So we don’t do it that way. But what we do is very and have a panel provider, that’s essentially a representative group of people, they have 2 million people on that panel from across Australia. And that’s how you get this large amount of people in order to get a representative sample. So absolutely, we could not do that on our own. So very happy to have a group of social researchers to do that work for us.

Sam Ikin 04:26
And as a journalist who’s done plenty of Vox pops, I’m grateful for you guys that you didn’t have to go and do that, because that’s awful. How many people did you speak to what was your sample size in it?

Dr Sarah Squire 04:37
It was just over 3000. And that was the same for that person, as well. So that is a representative sample. And just to note that the numbers of responses were also weighted to the Australian population, which is basically the data that the Australian Bureau of Statistics collect so they were weighted to make sure that they match the age and other demographics of the Australian population as a whole. So we’re very confident that what we found through this survey actually does represent What the many millions of people in Australia actually think and think they know about eating disorders?

Sam Ikin 05:04
You told us before how you work with the company that does the research or gets the surveys out there to come up with the questions and things like that. But what were some of the questions?

Dr Sarah Squire 05:16
So some of them were really around if people can identify the signs and symptoms of eating disorders, and so the question that incidences Do you feel confident you can identify the signs and symptoms of eating disorders? Strangely enough, we often get asked about Christmas relating to common myths and misconceptions about eating disorders. So for example, there was one around whether you see eating disorders as an issue of Vanity or a lifestyle choice, for example. And what was very pleasing is that actually, most people don’t hold those views. And they are decreasing in prevalence, but there is still a significant minority. So it was questions like that really trying to get people’s knowledge and beliefs. And then we had another battery of questions, which was around stigma. And so in order to get to what people actually think in terms of their stigma, we had several vignettes, which are basically case studies that describe these hypothetical scenarios for people. And then you ask the respondent to comment, or what they think about those people. So that’s a tricky way of getting around what people might say when they’re asked about something when you use a vignette and actually get to what people really think about it. So that’s really fascinating part of the study,

Sam Ikin 06:16
As someone who was involved in answering those questions, it would be pretty interesting as well?

Dr Sarah Squire 06:21
And I guess the thing with stigma is, it can be quite hard to say, what you really think about something and having a case study that removes you a bit from the process. So you can say, Oh, this is what I think other people would think about this person or this is what I think might be happening rather than do you think this for example, which is quite direct and quite confronting, you can’t really get around the bias that people have, without doing it that way.

Sam Ikin 06:45
We’ve gone through all of the logistical stuff, let’s dig into what we found out. What are the top takeaways that you think that we should know about?

Dr Sarah Squire 06:54
We asked people who if they’d been diagnosed with eating disorders, or whether they had any symptoms of eating disorders, or disordered eating just across a broader group of people. And what we found was that one in five people in Australia do have one or more symptoms, or bedding disorders or disordered eating or have been diagnosed with an eating disorder. So that’s actually a huge amount of people. And what we found in this second survey, is that self reported prevalence and risk of eating disorders has increased since 2020. So that’s what’s concerning. So it’s now 21% of the population, and it was 17% in 2020. And now we have 57% population have at least one symptom of an eating disorder, which is up from 50%, in 2020. So that’s a really powerful finding, I think, I think that will come as a surprise to the person in the street who does not know too much about eating disorders. We also asked people whether they felt they could identify the signs and symptoms of eating disorders. Yeah, when in one in 10, people can. So 11% of people can three years ago, 10% could say a little bit change, but not much. So it’s glaciers change is what we’re just talking about there. So that’s a real concern to us. And we do have some activity underway to try and help address I guess that basic lack of knowledge around what what eating disorders are and how you might detect whether you yourself need help, or when someone important to you needs help. We also ask people questions relating to myths and misconceptions about this and look, happily, most people don’t hold really harmful misconceptions about eating disorders. Those views have decreased. Not a huge amount, but still a significant amount since the first survey. And we take take heart from that we do think we are making a difference in terms of the education work that we do with the community. But definitely these findings are concerning. And they do show us that there’s still a long way to go in terms of educating the general community about eating disorders. Yeah.

Sam Ikin 08:53
Wow. But I guess that means that we’re reaching people. We added a Wii U add butterfly should take a lot of the credit for that, because that’s that’s a very positive result. You said, if we could go back just backtrack quickly, you said that most people or something like 20% of people have one out of five symptoms? Can you give us a little bit more detail on that? What sort of symptoms are we talking?

Dr Sarah Squire 09:17
So we’re talking about symptoms, such as engaging in eating disorder behaviour, which I won’t share now, because I want to engage? Discussion. But then there are questions about specific behaviours, which we know are a feature of certain eating disorders, we asked about ceilings around evaluation of weight and shape. We asked about levels of dieting, and to what extent over a certain amount of time, so there’s a questionnaire that we use there. And we also added some other questions in there just to get to some of the lesser known less prevalent eating disorders as well. So there’s a few questions that we asked as well as asking have you been diagnosed so that the correct quote before is people who have one or more of those symptoms, and then people have said they’ve been diagnosed as well.

Sam Ikin 09:57
Now, the cool thing about this is that we’ve got one that was done three or four years ago, so there’s not a whole lot of space in between them. How much had things changed around what people knew about body image and eating disorders in that small amount of time.

Dr Sarah Squire 10:12
So we’re pleased to say that there has been changed has been positive change. Many more people now have heard of butterfly Foundation, which is fabulous, not just as a nation, but that means they understand the issues that we’re talking about, right? More people know who we are, and what we do. That means more people are getting the information and support they need. But one thing that actually is different with this survey, which I didn’t mention previously, is that I added three questions to it, which align the survey with butterflies recent when he called us survey, which you might recall, I think he might have done a podcast on that as well. Yeah. Well, I really wanted to get a sense of the prevalence of body dissatisfaction among all population groups, and its impact on people’s lives. So that includes things like accessing education, employment, social activities, and also relationships. And those results were quite sobering. We found that body image concerns are common with one in three people dissatisfied with how they look. So that indicates that we still have quite a bit of work there to do in that area.

Sam Ikin 11:13
It is such a pervasive thing isn’t it can affect almost every aspect of your life. And that’s not just having a fully diagnosed eating disorder, just having issues with body image can be something that affects all sorts of things. So it’s really good that we’re finding out this kind of that we were getting this information. So then Butterfly and all of the other amazing organisations that work in this space can then direct your efforts and your resources in the right places. What in your opinion, was the most concerning thing that’s come from the report?

Dr Sarah Squire 11:46
I think it’s concerning that obviously, eating disorders and disordered eating is so prevalent, I guess my message is to anyone listening who has a lived experience, then sadly, you have a lot of company that also mentioned that alone, and obviously will push the message that people can get support and recover at anytime. And also that preventative options are also really important. But yeah, I guess those findings around stigma are really important because stigma can lead to discrimination and discrimination can really impact on how people experience all sorts of domains of life, whether that be access to education, or employment or goods and services. So I think those are really the concerning findings. As I say, it’s pleasing to say that there’s been some shit, but yeah, that the pace really needs to be accelerated.

Sam Ikin 12:29
Yeah, look, when there’s always bad results, hopefully, there’s some good results. Is there anything in there that gave you a little bit of a hope just to reinforce that you’re doing the right thing.

Dr Sarah Squire 12:39
There have been shifts in stigma, that number of people that do hold stigmatising gays is going down. And it’s still it is a minority of people. It’s a significant minority, but it’s a minority, if you know what I mean. So I think that just goes to show that the work we’re doing is making a difference, we just need to keep going with it. As I say, we need to accelerate pace of change, we need to bring the community with us.

Sam Ikin 12:59
I really do think that we’re seeing a bit of a shift in the right direction when it comes to the stigma, especially when it comes to eating disorders, and particularly among younger people, that’s really good to see that the people who are coming up are going to be thinking about this differently. And is that the feeling that you’re getting from some of the results that you’re saying?

Dr Sarah Squire 13:21
Yeah, I guess the results show there’s lots of opportunities to intervene different cohorts make different types of material, what we’re seeing is this is an issue across all those demographics. Obviously, there are some types of people that are resistant to change, but a lot of people aren’t. And the great thing about knowledge and beliefs and attitudes is that they can change and they don’t change, you only have to look at a range of health promotion campaigns across multiple areas of policy, for example, anti smoking campaigns, road safety, wearing seatbelts, that kind of thing. Things change over time, if there’s enough investment, and it’s targeted well, people change how they view things, and then their behaviour changes. And when their behaviour changes, that just makes life easier for everyone. Because then people don’t carry the weight of public stigma. They don’t internalise that as self stigma, and they don’t get discriminated against because their body looks a certain way or they weigh a certain amount, that kind of thing. So I definitely think there’s a lot of hope in this report as well.

Sam Ikin 14:20
So we’ve got this knowledge now. And knowledge is useless unless you can do something with what is it that we can do with this that it particularly if you’re someone with, say, a lived experience, or you care for someone who lived experience,

Dr Sarah Squire 14:32
I guess the best way to answer that question is to look at the different types of people that can use this knowledge. So knowledge is power, right? So you can use that power for good or evil. Obviously, we won’t be able to use it for good, or the general public. Obviously, this is a survey of the general public and we want the general public to see it and perhaps to maybe do a little bit of reflection and introspection around what’s in the report and whether they share any of those views and whether they need to find out a little bit more All but the general public, I’d say, people need to understand that eating disorders and disordered eating is prevalent. If you are a person with lived experience, and as I say, you’re not alone, this is something that’s quite common. So from that perspective, it’s a little bit like depression, anxiety. We all know people who’ve had these mental illnesses, we may have had them ourselves. These are things that can come and go across the lifecycle. So the more I guess that can be normalised it’s it’s normalisation is bad, because you don’t have any suffering. But in a sense that normalisation can take away the stigma, because you got actually, there’s millions of people that feel like this as well. Oh, and actually, people who can actually get better people can live good lives. So I guess for me, a key finding is around self stigma, because we know that self stigma to that negative judgement on oneself is actually quite high among people with eating disorders and disordered eating. But I guess my message really is is to be able to experience is that I want people to know that what they are feeling about their experiences and how they frame them is valid. We are all the products of our culture and the views of people around us. And it’s not your fault. If you’re ambivalent about your symptoms, because we are all steeped in this culture, this diet, culture, and weight stigma everywhere we look. So I don’t want people to see this and think, oh, there’s no hope. There’s no chance of recovery. Because Absolutely, there isn’t, as I say, knowledge is power. And people that experience can use that knowledge, they can use that knowledge to get well to seek help to accept help, they can also use that knowledge to advocate So my message is, join us at butterfly get involved in our butterfly collective, which is our live experience online reference group, help us advocate for change, help us determine where funding goes to help us determine how to create the change that we need. And for the sector, if you’re looking at the broader eating disorder sector or mental health. Yeah, yeah, I think for them, they need to understand that sort of stigma is complex. It’s really important, and it’s under research. So we really can’t change levels of knowledge, such as being able to identify signs and symptoms or support people to seek help, when they need it without understanding how self stigma and public stigma signal works for people with eating disorders, because it is a bit different other types of mental health stigma, and that’s probably another podcast. But I think we need to understand what we’re dealing with in order to combat it and for the sake dried, so we need to keep collaborating and joining advocating for the investment that’s commensurate with the high levels of need in the community, which is what we see in this survey. And I guess I have a message for governments to anyone’s listening, they carry $451 million of the cost of eating disorders every year through the health system. So they really under the need to understand what the reality of people’s lives are like, and how challenging it is to experience an eating disorder have stigmatised these conditions are and how hard it can be even just to take that first step towards recovery. And it’s also important, I think, to understand stigma, because stigma, which is a feeling or judgement about something can lead to discrimination, which is where you’re talking about actions, right. And discrimination can impact all domains of a person’s life. So that can be someone’s ability to access and remain education, to access and remain in employment, to pursue sport, to ensure to pursue activities like going to the beach, really basic everyday experiences. And even things like pursuing a romantic relationship. If people don’t feel good about their bodies, they’re not going to be able to do any of those things. So all of these things are well beyond the health system. And they all come with an economic cost, and with a well being cost. So I think there are messages in this report. For all of those bricks.

Sam Ikin 18:42
Stigma’s one of the big things that we talk about a lot on this podcast. We also like to talk about the myths and stereotypes which make it really hard for people to firstly, reach out for help, and then secondly, to be able to accept that they have a problem with themselves in the first place. What general advice would you have for how we can get around these kinds of things?

Dr Sarah Squire 19:05
I guess for people with lived experience or carers. I think just recognising that you’re not alone. And that things can and do change. So butterfly is here for you. And everything that we do at butterfly is actually guided by lived experience. That’s our reason for existing. That is our charitable purpose. Right. So we are here for you. And as I’ve said before, knowledge is power. Read the report, get involved, get our work. Join us in advocating for a better system of care for people with eating disorders and body image concerns. Getting involved in advocacy can actually be a really enjoyable and empowering thing to do that I think personally can really help a lot with recovery and with maintaining recovery and well being in the long term. I think for health professionals. Our message really is to take eating disorders as seriously as other health and mental health conditions. Educate yourself and also check your own levels. stigma. For educators. It’s the same as healthcare providers check your own levels of knowledge and stigma. For researchers, I’d really encourage people to think about focusing on eating disorder stigma in their research and their grant applications. And as I’ve suggested for policymakers, the people in government, people who are making the decisions, providing the advice to our elected representatives, take eating disorders as seriously as other mental health and physical health condition. We really want to do more in prevention, to stop people from becoming ill in the first place by strengthening known protective factors and diminishing known risk factors, really, I guess my message is, knowledge is power, understand the problems that you can be part of that solution. But in general, I’d say anything, disorders are prevalent, and they’re serious, but help is available. And recovery is possible. At any stage hope and resilience. Transformative. Advocacy is powerful. It can be a meaningful part of recovery and keeping well. And life without an endless thought is wonderful, and it’s achieved.

Sam Ikin 21:06
And look, that sounds like a really good place for us to end, but I have one more question for you. And that is, now that we’ve worked out what the public knows, what are some of the most important things that we need to teach them?

Dr Sarah Squire 21:18
I think understand that it is basically busting those myths. So eating disorders are not and never are a lifestyle choice. Almost 70% of us think that’s the case, but it’s not true. One in six people perceive eating disorders as a sign of weakness. That is also not the case. One in seven people agree that people reading disorders could just snap out of it. We know that’s not the case. These views are held by a minority of people. But we really need to reduce that minority down. We need people to understand the truth about eating disorders and to be able to advocate in their daily conversations. If they spot something that’s in their own behaviour or the behaviour of others. We want them to act and we want people to feel like they can seek help as well and we want people to be able to accept help me that’s offered and they can only do that is stigma juices. So my main message is really around. We really need to try and eliminate those stigmatising views across the board.

Sam Ikin 22:15
Dr. Squire, thank you so much. We really do appreciate your insights. And thanks for joining us on the Butterfly: Let’s Talk.

Dr Sarah Squire 22:21
Thanks for having me.

Sam Ikin 22:23
Butterfly’s really excited to launch a new simple screening tool to help you work out if you’re experiencing eating disorder symptoms. And then whether or not you should go and seek help. There’s a link for that in the show notes. You’ll also find it on Butterfly’s website butterfly.org.au. If you want to have a closer look at the community Insights report that we’ve been talking about through this episode, there’s a link in the show notes. Or you can also find that on the website butterfly.org.au. And that’s where you’ll also find details for the community insights webinar. It’s called eating disorders 101 spotting signs and stopping stigma going head on Wednesday the 17th of April 2024 over zoom. There’s a link to that in the show notes too. If you need support right now the best place for you to start is the Butterfly National Helpline on 1 800 33 4673 That’s 1 800 ED HOPE. Butterfly: Let’s Talk is produced for Butterfly Foundation by Ikin Media with the support of the wonderful Waratah Education Foundation. I’m Sam Ikin