Podcast: COVID-19, social media and those with intellectual and developmental disabilities

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Jim Dryden (host): Hello, and welcome to “Show Me the Science,” a podcast about the research, teaching, and patient care, as well as the students, staff and faculty at Washington University School of Medicine in St. Louis, Missouri, the Show-Me State. My name is Jim Dryden, and I’m your host this week as we continue to look at the Washington University response to the COVID-19 pandemic.

Patricia Cavazos-Rehg, PhD: Target vulnerable online communities to deliver timely interventions to help mitigate negative mental health consequences related to online social networking about COVID-19 and the negative impact, the uncertainty that many of us are experiencing and the stress and whatnot.

Dryden: That was Washington University psychiatry researcher Patricia Cavazos-Rehg. In this episode, we’ll hear about her project involving computer scientists and specialists in artificial intelligence from Georgia Tech who are working with her to identify groups on social media that may be in danger of succumbing to the stress and anxiety created by the current pandemic. But the pandemic is affecting not only those who use social media. Another vulnerable group we already know about is school-age children and their families. And other Washington University researchers are involved there. Child psychiatrist John Constantino says the stresses around school are particularly tough for families who have a child with intellectual or developmental disabilities. He says as debates continue about whether and how to conduct in-person learning in schools, the special needs of children with disabilities need to be taken into consideration.

John N. Constantino, MD: It would seem to me that individuals with developmental disabilities should be the first to return to school or the highest priority for identifying an in-person strategy for school because the alternative is nothing for them.

Dryden: Constantino is the director of the Intellectual and Developmental Disabilities Research Center at Washington University School of Medicine and St. Louis Children’s Hospital. He recently wrote an article on behalf of the directors of 13 similar centers around the country to remind psychiatrists and other physicians about the impact of COVID-19 on children and adults who have intellectual and developmental disabilities.

Constantino: The focus of the paper is to collate and put together all of the information about the disproportionate impact on the developmental disability population, Jim, because I think many people are aware of different facets of it, but the totality of the impact for one family or one person can be excruciating and relates not only to the infection. Essentially, the burden is on uninfected individuals with developmental disabilities because the scenario for risk mitigation, the protection of people, the concerns about transmission intersect with so many aspects of the lives of these individuals. So if you imagine a family with one or more individuals with developmental disability, let’s say it’s a child, you have the issue of any kind of therapist or support person that has to work one on one with that individual either in their home, if it’s a young child, or in their home, if it’s an adult. For school-age individuals, all the personnel that relate to a special education, all of that is compromised and impinges on people with developmental disabilities. Then you add to that, the usual methods that we’re using now virtually can be completely ineffective for these individuals. And moreover, the disruption of human contact, which most of us are able to place in context with virtual interaction, can become impossible, or impossible to either comprehend or experience in the same way by a person with developmental disabilities. So if you think about the sum total of what aspects of an individual’s life become cut off as a result of the pandemic, the magnitude of, sort of, isolation and impact is really profound. And then, finally, there’s the issues of the various kinds of subsidies and emergency allocations that have been made, but sometimes, in the process of allocation, the details of ensuring their equitable distribution to people with developmental disabilities in those situations is overlooked. And so what we tried to do is really just put together that picture so people really understood what the totality of the issue is.

Dryden: Anecdotally, are we hearing about disabled people bearing a particular burden in terms of disease and death or in terms of — I’m guessing that kids with special needs who are in school and maybe have an aide at school with them. If the aide can’t come home and they have to do it on the computer, that’s a lot different, and maybe they’re not getting what they need.

Constantino: Oh, they’re definitely not getting what they need. There are many children, particularly throughout the whole school years, that just simply cannot benefit from a virtual-based medium for education. That doesn’t bridge the gap in helping them to learn and advance. And as far as the health issues, that’s way beyond anecdotal. Disproportionate morbidity and concerns about specific developmental disability syndromes that make people with disabilities medically more vulnerable.

Dryden: Adults with disabilities, for example, are more likely to have other problems, other comorbidities, that would make them more likely to have a poor outcome from COVID, correct?

Constantino: That’s part of it, and there’s also very specific kinds of aspects. For example, the immune dysfunction that sometimes travel with inherited or genetic developmental disability syndromes. And so there’s lots of different ways that these conditions — that subsets of people with developmental disability are particularly vulnerable.

Dryden: So what do we do?

Constantino: I think the issue is that in the larger scale decision-making about who should return to school, when should people return to school, how should we allocate somewhat limited testing resources to ensure that people are safe and so forth? I think that some of the blanket decision-making can overlook the high priorities that need to be attended to for this population. So, specifically, I think from an educational standpoint, it would seem to me that individuals with developmental disabilities should be the first to return to school or the highest priority for identifying an in-person strategy for school because the alternative is nothing for them. The biggest issue is that there is an impact on the family of the household members continuing on with their own job, their own work. And when it’s an absolute necessity that a person with developmental disability have an in-person attendance, that creates a monumental burden on the family and the other members of the household as well.

Dryden: And I guess that it’s impossible for lawmakers to think of everything when they’re in a rush like they were with the first bill. But these are things that have to be considered. That’s the argument your group is making.

Constantino: Exactly. Just to have, in one place, because you see a lot of advocacy for different facets of it, but we felt as a group that this article was important to sort of circle the wagons and understand what sort of universe of impact there is on a person or a family affected by developmental disability. Just so people know what all of the issues are. And, of course, it doesn’t cover every issue for every family, but it’s so complicated and so multifaceted that we felt it was important to get that message out to the community of all physicians. We want to get the message out there so that those working with these families and in a position to advocate for them really understand.

Cavazos-Rehg: So my name is Patricia Cavazos. I’m a professor of psychiatry at Washington University School of Medicine.

Dryden: As hundreds of thousands of children attend school online, many of the rest of us also are spending extra time on our computers, smartphones, and tablets reading information about the pandemic on social media that may or may not be reliable. Either way, Cavazos says it causes stress. She’s part of a project to find some of those who might be harmed by social media and to attempt to use social media itself to relieve stress. Cavazos is an expert on social media, having studied how it often is used to attract people, particularly young people, to potentially harmful things like smoking, drinking and using marijuana.

Cavazos-Rehg: We do want to build a machine-learning model to forecast different online communities and potentially geographic areas where people are that may be experiencing consequences related to COVID-19. And we’re focusing on mental health consequences. What we want to do is really target vulnerable online communities to deliver timely interventions to help mitigate negative mental health consequences related to online social networking about COVID-19 and the negative impact, the uncertainty that many of us are experiencing and the stress and whatnot.

Dryden: This is one of those two-edged swords. We’ve got a situation now, I guess, a lot of us are in our homes, so we’re separated from others so social media is how we connect. But on the other hand, social media is bringing in lots of scary things when we connect.

Cavazos-Rehg: We are really relying on social media to stay connected, to get the latest updates. And you’re absolutely right that a lot of what is on social media is anxiety-provoking. That is the content that is easily found. And also oftentimes, we are drawn to that to find out more about what might be happening, and at this time, a lot of it is going to be the negative things that are happening. There is misinformation on social media, and that is problematic. There are a lot of people, almost 50% of people, have what would be described as poor health literacy. So some of what we can do is work to balance the content that is on social media so that it’s not only anxiety-provoking. If there’s misinformation out there, we want to make sure that people have the most reliable, accurate information that they’re reading about the information that’s coming from trusted sources. And at the same time, there’s certain interventions that people can do to help reduce the anxiety like taking breaks from social media. I mean, even though we’re using social media to stay connected, we want to make sure that it’s not having a negative mental health effect, which is highly likely.

Dryden: You’re going to do this through those promoted tweets that come up in everybody’s timeline. How many people click on those promoted tweets compared to others and engage with those? Is there a statistical difference, or do some folks not even notice that it’s a promoted tweet? They’re looking for the content. How does that work? Because, I mean, in my feed, it’s a lot of diets and things like that that come as a promoted tweet. I tend not to click on them. But am I unusual, or how does that work?

Cavazos-Rehg: We are going to focus in on Twitter, Reddit and YouTube. And you’re absolutely correct that some of our intervention will focus on promoted tweets on Twitter, and we will be delivering health messages in that way. And what we’re hoping is that we are going to be very careful about the way that we’re delivering the messages so that they are appealing and engaging and individuals do want to click on them or don’t even notice.

Dryden: Are your kids using social media? Are you interacting with them during these times to try to lower their stress levels, and how’s that working for you, and is social media a part of that?

Cavazos-Rehg: That’s a really interesting question. And of course, it’s definitely one as a mom — I have two girls, an 11-year-old and a 13-year-old. And they love social media just like any other young person in their age group. And I think that I’m happy that they’re normal kids and want to engage with others on social media, but I am concerned about some of what I see on social media. So I do from time to time audit what they are viewing on social media, meaning that without any warning, I’ll ask to see their phones and take a look and scroll through everything that they’re seeing and things that they’re also sending. And it has led to many lectures about what’s appropriate and what’s not and then also having them take a break from social media for weeks at a time. So we would call that grounding, right? So grounding them from social media when I see things that are inappropriate. So that’s actually pre-COVID where this has been an ongoing real struggle for me and for my family is just trying to keep my kids safe. The struggle is real in social media. Even if they are receiving things that are up to date and accurate, I just don’t think it’s healthy for them to be on these platforms all the time looking at it as more of a hobby. And it’s something that we rely on very heavily and figure out a way to do that and stay connected in other ways besides social media. But, you know, the struggle is real.

Dryden: Now, you talk about auditing social media use, taking a break from social media, doing that as a parent. Is it important that we parent ourselves and do the same thing from time to time?

Cavazos-Rehg: We need to really be self-aware. And I know for myself, I’ve tried to be on social media, and it was not a healthy behavior for me. I just noticed that, really, the benefit did not outweigh the cons. And so I’m not on social media myself. I study social media, my lab uses social media, but I myself am not on social media personally. I feel better being disconnected. I tried it for a bit and noticed that it was not a positive experience for me. I think people need to be self-aware.

Dryden: How closely can you tailor messages like these? I mean, once it’s on a platform like Twitter, anybody can find it, but if you’re targeting specific populations, specific communities, how fine can you go?

Cavazos-Rehg: Yeah, so we want to deliver a brief intervention, a brief evidence-based intervention. We have ideas. We want to follow cognitive behavioral techniques. We are already thinking about the different interventions that we’re going to be delivering, but recognizing that we can only do brief interventions, and people may need more than that. So we can continue to follow and monitor. If it appears that our brief intervention is not working successfully, then we’re always going to be recommending to go and to seek more intensive mental health care.

Dryden: Cavazos and Constantino both continue studying some of those on the margins who’ve been struggling during the pandemic. Online communities being harmed by what they read on social media and people who have intellectual and developmental disabilities. At present, neither group appears to be getting the support they need. “Show Me the Science” is a production of the Office of Medical Public Affairs at Washington University School of Medicine in St. Louis. The goal of this project is to keep you informed and maybe teach you some things that will give you hope. Thank you for tuning in. I’m Jim Dryden. Stay safe.

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