Show, Don't Tell
It’s the kind of advice more often given in a creative writing class than the Annals of Family Medicine. But “Show, don’t tell” is one of the tips that Joanne Wilkinson, an assistant professor of family medicine and associate director of medical student education, offers to physicians who want to communicate better with patients with intellectual disabilities (formerly mental retardation). For example, a doctor might use a dummy to show a female patient how to conduct a breast self-exam, rather than simply talking her through the procedure, because patients with intellectual disabilities often grasp specific, concrete examples more easily than abstract explanations.
Wilkinson is currently developing a metric to assess what she calls “preparedness” for mammography in women with intellectual disabilities. “I want to differentiate ‘preparedness’ from knowledge,” she says. “When we interviewed women with mild intellectual disabilities for the qualitative study published in the Annals of Family Medicine, it wasn’t necessarily that they needed more knowledge about why you should have a mammogram, or what their risk of cancer was. It was just the logistics: Where do you go? Is it cold? Do you need to take your shirt off? How long does it take? None of those things had been explained to them ahead of time. I think in almost every case their physician had simply said, ‘You’re due for a mammogram.’ End of story.”
Preparedness is key, Wilkinson continues, because much of the women’s independence in their daily lives can be attributed to the fact that “they’re moving in spheres that they are familiar with. If you put them in an unfamiliar setting, they can be very anxious.” By giving them a better picture of what to expect at a mammogram appointment, Wilkinson hopes to make the process less intimidating and ultimately to reduce disparities in screening and preventative care for women with intellectual disabilities.
To this end, Wilkinson and her research assistant are creating and pilot-testing a video about a woman with intellectual disabilities who undergoes a mammogram. Because some of the women in the study don’t read, Wilkinson realized they would need to deliver information in a way that was not literacy-based. She came up with the idea of having a relatable character in the video, “rather than a talking head that talks about mammography,” after speaking to one woman, who said, “I have that thing with my bones, that thing that Sally Field has,” referring to an advertisement for the osteoporosis drug Boniva.
“I thought if we can have a character and a story, maybe that would make it a little easier for people to grab onto the information,” says Wilkinson, whose work is funded by a Career Development Award from the National Cancer Institute. She hopes to cast an actress with intellectual disabilities in the starring role.
“I believe with my heart the video will work,” she says, “but in order to be able to prove that it works, we need to have some measurable thing—this thing I’m calling preparedness—that improves.” To that end, Wilkinson is developing a set of questions that can be used to determine whether or not a woman is prepared for a mammogram. Here, too, effective communication is a top priority, with questions carefully framed in concrete, relatable terms.
Wilkinson first became interested in patients with intellectual disabilities when she was in private practice and gradually found herself with 20 or 25 patients with intellectual disabilities from nearby group homes. “I wanted to make sure I was doing the best for these patients that I could,” says Wilkinson. “I naively went to PubMed, thinking surely there are learned people who can tell me what to do. And there was really nothing.” Now she is helping to establish best practices for both clinicians and researchers, shared through an annual conference funded last year by the Agency for Healthcare Research and Quality.