Nurse Maureen‘s Health Show
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Nurse Maureen‘s Health Show
TikTok's ADHD Misinformation Crisis
Good evening and welcome to another episode of Nurse Maureen's Health Show podcast. I'm Maureen McGrath, a registered nurse, nurse, continence advisor, sexual health educator. I'm in clinical practice and I've been educating about health for a long, long time. So I really appreciate you tuning in to the podcast and you know tonight's episode is really interesting and it has a multitude of applications. So I'd like to get going right away.
Speaker 1:Sharing stories is a powerful thing, but when they lack context they can lead to misunderstandings, especially on social media. More and more in my clinical practice, when I ask patients where they heard certain medical information, it's not uncommon these days that they say I heard it on TikTok. Well, TikTok is not necessarily the reliable place for medical information, whether it be about menopause supplements or, according to a recent study published in PLOS One about ADHD, attention deficit hyperactivity disorder. The study ADHD, misinformation on TikTok is shaping young adults' perceptions. An analysis of the hundred most viewed TikTok videos related to ADHD revealed that fewer than half the claims about symptoms actually align with clinical guidelines for diagnosing ADHD.
Speaker 1:Joining me on the line is Vasileia Karasava. She's a PhD student in clinical psychology at the Promoting Equitable Affirming Relationships Lab at the University of British Columbia. Good evening, vasileia, and thanks so much for joining me. Hi, maureen, thank you for having me. Oh, it's a pleasure. I find this so interesting because you know, so many people go to social media, whether it be Instagram or Facebook or TikTok, for their medical information. I don't know if that has to do with extensive wait lists or feeling unheard especially women by their healthcare providers, but this is not only something. I suspect that applies to ADHD, attention deficit hyperactivity disorder, but that's what we're going to focus on this evening. Vesalia, can you summarize the key findings of this study on ADHD, misinformation on TikTok and what surprised you the most?
Speaker 2:Yeah. So the main finding was that ADHD related content on TikTok is widely popular. There were millions of views and saves and shares and likes, but at the same time, that content, when just by two clinical psychologists who have 20 years of expertise in diagnosing and treating ADHD, didn't really line up with the professional standards standards. Then we showed some of these videos to 800 young adults who were either self-diagnosed, formally diagnosed or had no ADHD and we found that having a high diet of TikTok content made participants find it more accurate or helpful and also was associated with them feeling worse about their own ADHD symptoms and thinking that ADHD is more prevalent in the world than it actually is.
Speaker 1:And are we seeing a bit of an overdiagnosis? I sense that a little bit, that there's a lot of people, since the pandemic, have felt like they have ADHD. Is it this, as you say, this diet of TikTok?
Speaker 2:Look, it's kind of hard to gauge if we were seeing over-diagnosis or not. I think you nailed in the head earlier when you said that getting access to a medical professional in the healthcare system in Canada it's very difficult. To get an ADHD diagnosis, you need a referral and you usually need to wait several months and pay thousands of dollars. What I think our study scratched at was that people need support and often social media is the only place they can access that support, be it with a feeling heard or seen or understood about the things that they're experiencing or getting some advice about how to manage the symptoms.
Speaker 1:Absolutely. You know I work with one doctor who says, you know, we'd all perform 10% better if we went on some of the medications for ADHD. And you know, also in universities and colleges across the country. You know kids it's well known that kids share their medications for ADHD, their stimulants. And then you know patients may then go to TikTok, for example, and think, well, I performed better using my friend's ADHD medication. Perhaps I have ADHD. What types of misinformation about ADHD are most commonly spread on TikTok and are there any ones? Any specific myths that are gaining traction?
Speaker 2:That's a really good question. So a small portion of the claims better described other forms of mental illness, like describing in great detail binge eating. That would better describe binge eating disorder instead of ADHD. Another small portion about 6% better described things that we know are highly associated with ADHD but are not diagnosed as a criteria of ADHD, and this includes things like difficulties in social relationships, and I think you can easily imagine the sort of person who is impulsive, says the first thing that comes to mind, or cuts people off, or forgets the text of other people. So someone who experiences ADHD symptoms also having difficulties in relationships.
Speaker 2:However, this is not a diagnostic criterion for ADHD, because there are so many other factors that are associated with it, like your temperament or your personality, or how much time do you have to invest in your friendships and your relationships? By far the biggest bucket that we saw being filtered was things that are better associated with common human experiences. So having a sweet tooth, getting a song stuck in your head, like watching reruns of a show instead of watching a new show, or bumping into things Things are like many people without ADHD also experience and it's not really related to ADHD.
Speaker 1:Absolutely. Those are very common things and I think I do about four out of five of them. I won't say which ones. I think I do about four out of five of them, I won't say which ones?
Speaker 2:I don't do the reruns. What is the criteria for ADHD? Well, adhd is a neurodevelopmental disorder, so a major criteria is that people need to have experiencing some of these symptoms since they were young a child, usually before the age of 12. Experiencing some of these symptoms since they were young a child, usually before the age of 12. Sometimes this can be hard to parse through in assessments, so you will use things like report cards to see what teachers wrote down, or you will ask your parents to talk to you about how you were as a child, which can be a barrier to many people. Other core symptoms are things like having a difficulty concentrating, making careless mistakes like forgetting appointments, and also the hyperactivity and impulsive side, so feeling like you're driven by a motor, having a difficulty sitting still for a very long time or being restless. And, importantly, those difficulties have to be excessive, so more than the average person experiences, and can be distressing to you or cause you some significant impairment in some important area of your life.
Speaker 1:Like your job, or in school or in your relationship.
Speaker 2:Exactly.
Speaker 1:Exactly Well. Thank you for that. How is the misinformation on TikTok, for example, shaping young adults' understanding of ADHD? Does it lead to more self-diagnosis, misdiagnosis? Are people not feeling heard if they think I went to TikTok and TikTok told me I had ADHD, but then they go to the doctor who may do a series of questionnaires and rule out ADHD? How is that affecting young adults?
Speaker 2:Possibly with all the ways that you described. In our study we found two. The first is that people who consumed more of that content also assumed that ADHD would be more prevalent in the general population. So in Canada the prevalence in adults is about 3 to 5%, and our participants on average said that they expected to be about 34%, so one in three, which is quite high. The second thing we noticed was that people who consumed a lot of those TikToks also felt worse about their own symptoms, and that was after we controlled for things like gender or age or diagnostic status.
Speaker 2:So being formally diagnosed, self-diagnosed, etc. And what we think might be happening there is similar to doom scrolling. So having a general understanding of the news and the world is incredibly helpful. Understanding of the news in the world is incredibly helpful. However, how helpful is it if you spend two hours every night like constantly refreshing your feet to see what did Trump do? What's the news in all these wars that are going on in the world? This is probably making you feel a little worse. So we think that something similar might be happening here, where people might be reminded a lot about their own symptoms and then maybe become hypervigilant in their own lives. So a lot of the TikToks that we saw reminded people that people with ADHD make a lot of small mistakes. So if you consume a lot of this content, you might think about your own mistakes more and perhaps you might notice when you make some of those mistakes and forget about them harder.
Speaker 1:Wow, that is so interesting. You know why do you think that ADHD content is so popular on TikTok? You mentioned that at the beginning of the show.
Speaker 2:I think people need support. I think people are struggling, and ADHD is just so happened to kind of describe a lot of the things that people are struggling with at school or work. So like difficulty concentrating, needing to spend hours upon hours in front of a computer, either at school or for your job, doing menial tasks. And also most of the TikTok creators that we found were very good at their job. They were very entertaining. Most of these videos were also cute or quirky, very relatable in expressing their own experiences. So I think people are watching them. They are entertained. They also realize that they are struggling with something and here is an answer to their struggles. So no wonder they want to consume more of that content.
Speaker 1:Oh, and of course algorithm right.
Speaker 2:You can't avoid the algorithm, Like, if you spend a little bit of time on this type of content, it will show you more of that content. The algorithm doesn't care for you to be well-informed or feel good about yourself. It's a curse that you spend as much time as possible on the app.
Speaker 1:Right, exactly. I mean, I certainly get sent certain medical subjects that I deal a lot with in my clinical practice, a lot of women's health issues. Also, I think that short form video format I think social media has created a shorter attention span for all of us has created a shorter attention span for all of us. That may also contribute as well, and there is an addictive component to social media as well, so it's important that people aren't scrolling for hours in the day. How do creators with ADHD you said they're really good at it how about those that actually have ADHD influence the conversation? Are they helping to spread accurate information or is there a risk of personal experiences being mistaken for universal ADHD traits?
Speaker 2:I think it's a mixed bag. It's incredibly powerful to hear other people share experiences that you also have and feel less alone and make you know, find community in the world. Um, and let's not forget that the world is created for neurotypical people, right, people? You know, people on the autism spectrum do struggle more with a lot of the structures that we have in our society. Um, at the same time, um, like, not two people are going to experience it each the same way, so a lot of are going to experience ADHD the same way. So a lot of the content that we found was very idiosyncratic, based on the creator's personal experience. So when it's presented in a more generic way that if you experience this, then you have ADHD, well, I think that's kind of a problem, especially when some of those things could be attributed to other forms of mental illness or just part of the human experience.
Speaker 1:You know, with all this misinformation shaping perceptions, I know in our clinical practice and I just want to say in ours and that may be the type of GPs that I work with and that may be the type of GPs that I work with we have seen an increase in people seeking ADHD evaluations and I imagine that would be the result of TikTok. Do you think TikTok has helped raise awareness about ADHD in any positive ways, or is misinformation overshadowing its benefits?
Speaker 2:It definitely has helped a lot of people figure out their own situation. Historically, for many, adhd wasn't something that mostly hyperactive white boys experience, and both in the healthcare system, but, like in people in their everyday lives, people of color or women were often missed or mistaken. Of color or women were often missed or mistaken. So I'm not blaming um people for mistrusting a little bit the healthcare system or feeling invalidated or like they're not going to be hurt because this has happened historically. I'd like to think that the research has moved forward a lot and that the perspectives of people who don't fit this very specific mode are being heard more Like. For example, in our lab, my supervisor, dr Morimi Kami, is doing a lot of work on the experiences of Asian Canadians in accessing support for ADHD, and so in many ways, social media has democratized this information and I can't downplay the huge benefits of that.
Speaker 2:And the other thing is, I would like to encourage listeners who might be wondering if they have ADHD. Is that you might be right. I think it's a great idea to go check it with your doctor or with a therapist. A great idea to go check it with your doctor or with a therapist, but at the same time. If you don't meet the diagnostic criteria of ADHD, that doesn't mean that you were wrong in identifying in yourself that you would benefit from support or that there is something that you're struggling. It's not like that treatment magically starts working when you meet the very specific diagnostic criteria and you wouldn't work before that. I think, maureen, you made a great example earlier about that physician that you work with, right, that we all yes a little bit, uh.
Speaker 2:So it's still something that you can work with your therapist or with your doctor, uh, to tackle some of the difficulties, perhaps with concentration or anything else that you experience. You don't have to have an ADHD diagnosis to deserve support.
Speaker 1:That's a great point and you're so correct because, especially in the world today, you know there are so many other influencing factors that can contribute to lack of attention or not having energy or not being productive or having impact on relationships and work. You know things like substance use and abuse or anxiety or other mental health disorders as well. You know I often say about social media that the doctors are becoming influencers and the influencers are becoming doctors. At least, that's what my perception of the public perception is. What role do healthcare professionals and educators play in correcting ADHD misinformation, and should they be more active on platforms like TikTok to provide accurate information?
Speaker 2:Look, we tried to make a TikTok or like a short video to show our participants explaining some of the downsides of those TikToks. We quickly realized we're not very good at this. We're not as funny or as interesting as are relatable with all these creators. So I say leave it to the professionals. It could be very helpful for more healthcare workers who are more extroverted or who like doing this kind of stuff to be on social media. That would be awesome. It would also be great if content creators consulted with healthcare workers perhaps more to vet or peer review their content. Those are all great solutions, but they're on the individual level and what I think we're saying is systemic issues of people being denied the healthcare that they need and then the only thing that they have accessible is social media and that's where they turn to.
Speaker 1:Absolutely. You know there are so many ways that we can improve the health care system, especially in this country. You know, saving money, making it more efficient. You know, I heard about a particular program where today, where they go into homes if a person is incontinent and this doesn't have anything to do with ADHD, they will get, and they're older and they need support They'll actually have a healthcare worker come in twice a week. They'll qualify for that. Well, why don't we fix the incontinence and then you don't have to have somebody. If they're not incontinent, they have somebody go in once a week. You know that's a lot of labor, a lot of hours and we're not getting to the root of the problem. So I mean, there are so many wait lists for unnecessary reasons, and I think it applies to ADHD as well. How can young adults distinguish between credible ADHD content and misinformation on TikTok? Are there any red flags?
Speaker 2:The biggest red flag we found was how confident the content creators were. The content creators were, so the bolder the claims and the more sure they are about them, the more I would question them, just because ADHD is quite a nuanced and complicated neurodevelopmental disorder and it does show up differently on different people. So when you have a content creator being extremely confident that if you experience this sort of behavior, then you definitely have ADHD, I will question that. The second question is people trying to sell me something? About one in two of the content creators that we assessed were also selling things often related to ADHD, like supplements or here is a workbook on how to decorate your house to make it ADHD friendly or counselling sessions, but without actually being trained clinicians or psychiatrists, and so a lot of these treatments that were offered were not really backed up by research or science. So I will question people's bottom line and if they have finance and incentives to make bold and interesting claims about ADHD.
Speaker 1:Absolutely. I think that's the biggest red flag is that they're trying to sell something, and I'm surprised it's only one in two. I thought it was 100%. The other red flag that I see anyway is and I don't know if you see this about ADHD but they say the guidelines are outdated. Science hasn't caught up to us. You know, typically the guidelines are not outdated, but I think that's also another red flag, and these people who say that the guidelines are outdated whether it be diagnosing ADHD or treatment of ADHD likely are trying to sell you something, or maybe they're trying to lure you in and eventually want to sell you something.
Speaker 1:I see that with a lot of women's health, in particular, menopause, perimenopause and postmenopause. You know people trying to sell, whether it be a program or a product or supplements. You know so, and definitely there is an association between these. You know fantastical claims as well, so that's very interesting. What do you think is the road forward? What needs to be done whether by researchers, clinicians, social media platforms to ensure that people get accurate and helpful information about ADHD?
Speaker 2:I would hope there's more psychoeducation on the fact that people like mental illness is a spectrum we all fall somewhere on it fact that people like mental illness is a spectrum we all fall somewhere on it on every form of mental illness, and that if you struggle anywhere on the spectrum you deserve help and it's not like an all or nothing situation where the moment that you meet the diagnostic criteria you should get help and everyone else should just figure things out on their own. That's a huge part. Of course, I recognize it's kind of a catch-22 because a lot of insurance companies require a formal diagnosis in order to get access to a therapist or medication. So I would like to see change there honestly, yeah, that's a great idea.
Speaker 1:Vasilija, thank you so much for joining the program and talking about this incredibly important subject.
Speaker 2:Thank you, Marie.
Speaker 1:Funk for having me. My guest was Vasilea Karasaba. She's a PhD student in clinical psychology at the Promoting Equitable Affirming Relationships Lab at the University of British Columbia and she was the lead author on the study ADHD Misinformation on TikTok is Shaping Young Adults adults' perceptions A very important study. And I'm Maureen McGrath and if you feel that this episode would help anybody, feel free to share. If you have any questions at all, you can email me nursetalkathotmailcom or you can text the show 604-765-9287. Thank you so much for tuning in. I'm Maureen McGrath, registered nurse, nurse, continence advisor, sexual health educator, and you have been listening to Nurse Maureen's Health Show podcast. Thanks so much for tuning in. I'm Maureen McGrath and you have been listening to the Sunday Night Health Show podcast. If you want to hear this podcast or any other segment again, feel free to go to iTunes, spotify or Google Play or wherever you listen to your favorite podcasts. You can always email me nursetalk at hotmailcom or text the show 604-765-9287. That's 604-765-9287. Or head on over to my website for more information. Maureenmcgrathcom.
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