By Dr. Yona Lunsky
Since the start of the pandemic, there has been plenty of talk about the “infodemic”, i.e. too much information including false or misleading information, and how it impacts all of our mental health. October 10th was World Mental Health Day and I spent some time thinking about how the stories we craft about COVID-19, even the research stories we publish, stay with people with developmental disabilities and their families in harmful ways. These are the unintended long-term side-effects of bad news.
While most recently my focus has been on the risks of COVID-19 to people with developmental disabilities, bad news stories are not unique to the pandemic; they permeate many other health care issues faced by this population: gaps in services when transitioning into adulthood, aging, poverty, and the list goes on.
I think things hit people that much harder now because they are depleted, they have been inadequately supported and horribly anxious for over 18 months. And it is not clear when and how things will improve. This makes it that much harder to critically appraise sensational news headlines.
A few weeks ago, a study came out in the British Medical Journal which predicted risk after vaccination in terms of COVID-related hospitalizations and mortality. Although it was not the main focus of the study, one of the findings was that adults with Down syndrome, a group we have heard repeatedly is much more likely to be hospitalized and die if they contract COVID-19, had much greater risks after vaccination than people without Down syndrome.
The study was complicated to interpret with regard to the Down syndrome group, in part because so few of them, if any, were hospitalized or died after getting either one or both vaccines. Since it was not the main focus of the study, these results were not discussed comprehensively by the authors. Shortly after the article was published, news articles such as this one in The Guardian and this one from Disability Scoop, came out emphasizing the very high risks of COVID-19 for vaccinated people with Down syndrome, causing some serious bad news side-effects. In response a group of scientists from around the world with expertise in Down syndrome quickly came together to craft a rapid response to the study, published this week in BMJ, which I encourage you to read.
The impact of people reading these news stories was the impetus for this blog. If this blog was simply an explanation of this BMJ study, the headlines that followed and their impact, then I would be done at this point, but it is about more than that. This blog is about the responsibility we have as scientists and science journalists, to explain our findings with care. And it is about our responsibility as clinicians and even as community members to support our patients and families who have experienced the side-effects of bad news, and treat these side-effects as best we can, by reducing their severity as well as their duration.
Over the years, I have learned that we have to emphasize the risks to get appropriate care for people with developmental disabilities; without doing so, this group can be missed as we have seen when it comes to vaccine priority planning. But we also have to qualify what we mean when we say risks. We have to unpack our research findings so people can understand them. And we have to anticipate where people’s minds will go to when they hear our findings, and give them the resources they need to help them manage that information.
So how do we do this? I don’t have all the answers but I think we start by listening to and learning directly from the people with developmental disabilities and their families. We need to name it to tame it! Let’s talk directly to the people most affected about how they hear information, the feelings it stirs up, and how to address those feelings. Let’s share relevant information and resources that address concerns flagged in a “bad news” article, and find ways to strengthen coping skills when we can. Let’s be good allies and support the constant advocacy that is required. And when those things are not enough, let’s simply offer the space to be together in that difficult place.
And at the same time as we do these things, we can all play a role in preventing bad news side-effects from emerging in the first place. We do this by being responsive to everybody’s needs, especially the small group of individuals who are at greatest risk and get the fewest supports. We share bad news in research studies in the same way our favourite doctor shares bad news in clinical practice: as clearly as possible, with tenderness and care.