The joy of communicating science to individuals with IDD and their families: A VKC Member perspective

Mother and daughter watching vaccine video
Photo of Beth Malow, M.D.

Beth Malow, M.D.

As Vanderbilt Kennedy Center members, we deeply care about advancing the health of people with intellectual and developmental disabilities (IDD). We do so through the research we conduct, the patients and their families we see in clinic each week, and the advocacy we carry out with elected officials.

During the COVID-19 pandemic, I sought out another path to advance health for those with IDD. I decided to go back to school! I pursued graduate studies in science communication through the Alan Alda Center for Communicating Science at Stony Brook, New York. I chose this program because I was impressed with the emphasis on storytelling and theatre techniques (stemming from Alan Alda’s acting career) with a portion of the curriculum devoted to teaching us improvisation skills for communicating our science. I had a strong desire to learn how to communicate science to the public in a way that would empower them to make informed health decisions for themselves and their families. Why? I had seen mistrust develop in the general population related to vaccinations and other public health measures, such as masking and lockdowns.

People with IDD are one of the most vulnerable populations for contracting COVID and for its negative health and social consequences. They are exposed to a myriad of home health workers and therapists making them susceptible to infection, and yet, they also were isolated from friends and family. They have underlying conditions, such as obesity, which can be risk factors for more severe disease requiring hospitalization. They may be at greater risk for long COVID symptoms.

With the support of the Vanderbilt Kennedy Center UCEDD, I worked on a video project focused on helping people with IDD and their families make informed health decisions about the COVID vaccination. This was one of the most meaningful projects I accomplished during the COVID pandemic, because I was reaching a larger audience than those I followed in clinic, on a topic that I felt passionate about. I wanted to help people with IDD and their families feel like they weren’t being told what to do but were using self-determination to make a decision that felt right for them. I worked with a talented team and got input from people with IDD and their families.

The video was filmed in English and translated into a Spanish version. Our videos were featured at Vanderbilt University Medical Center’s 2022 Strategy Share, the Cumberland Pediatric Association’s vaccine confidence project, and presentations to the Tennessee Department of Health. If I piqued your interest to watch the videos, they can be found here.

During my science communication studies at the Alda Center, I carried out projects focused not only on COVID but on climate change and health, and on the sleep science related to ending Daylight Savings time change and moving to year-round standard time (a topic that I was invited to testify on before a U.S. Congressional Committee and several Tennessee state legislative committees). My final Alda project was focused on melatonin safety. I had attended a session at our annual sleep conference on the benefits and risks of melatonin supplements (including concerns about melatonin being baked into brownies and combined with CBD, and the rising number of overdoses). I knew from my research and clinical practice how beneficial melatonin could be for individuals with IDD and was concerned about the proverbial “throwing the baby out with the bathwater”—in other words, not making melatonin available to so many individuals who could benefit because of perceived risks. Many health care professionals have questions about melatonin and seek out this information, too. I wanted to help people decide if melatonin made sense for their child.

So, I created a video and two blogs to provide basic information and answer common questions (e.g., How do I choose a reputable brand of melatonin? Will my child become dependent on melatonin?) and published these on YouTube and Medium. The blogs can be accessed at tinyurl.com/Bethswisdom and tinyurl.com/Bethswisdom1.

Core to my definition of health and science communication is a belief that it is our responsibility as science communicators to educate our audience in a way that teaches them to be critical thinkers. Rather than limiting our communication to providing the public with facts, I believe we should help them navigate the large volume of information that is accessible on the internet, including websites and social media. I believe that we should help our audience understand how scientific research is done, and how to spot limitations in what they are reading, which can take the form of misinformation or bias. I want my audience to see that I value their desire to think critically.

This approach encourages public engagement. A questioning audience challenges me (and other health/science communicators) to look at our beliefs to make sure that they are solid and that we are explaining them in a way that makes sense and is easy to follow. This approach fosters a relationship with the public that promotes trust in me, and other health and science communicators.

The philosophy is rooted in my background as a physician. I’m keenly aware that people are more likely to follow treatment plans, for themselves and their families, if they have participated in creating these treatment plans or have had the opportunity to question them.

I encourage you to try your hand (or laptop) at communicating science to those with IDD, and their families, whether it be by writing a blog or social media post or creating a video. You may surprise yourself with the joy and satisfaction you feel from making a difference for so many.

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