The graphics were created by KITE researchers Thaisa Tylinski Sant’Ana, Dr. Angela Colantonio and Dr. Tatyana Mollayeva
It’s becoming increasingly clear to researchers that traumatic brain injuries affect people differently based on their sex and gender. But do patients know it?
That question led a team of researchers to develop a series of ‘Gender Matters’ infographics about how sex and gender affect care and recovery from traumatic brain injuries (TBIs), such as concussions, and write a paper about their creation. Thaisa Tylinski Sant’Ana, a research analyst at KITE, led the research; KITE senior scientist Dr. Angela Colantonio and scientist Dr. Tatyana Mollayeva were also part of the team.
The graphics are available online as a comprehensive booklet, Sex, Gender and Traumatic Brain Injury: A Path to Recovery and Care. They cover topics such as differences in common causes of traumatic brain injury for men, women, and transgender and non-binary people, as well as differences in how they seek care and how much support they receive from their caregivers.
Many people shared that they felt alone and confused through the process of recovering from a TBI, says Tylinski Sant’Ana. The booklet helps people with TBIs and their caregivers better understand how TBIs impact their relationships and adjust by, for example, being open to having new roles.
“Through this, we hope people will be able to reflect, create more communication within their support systems, and adjust to changes that happen after the injury,” says Tylinski Sant’Ana.
Tylinski Sant'Ana says the process of creating the graphics was as important as the product.
The team created the booklet using an iterative participatory design. It included patients with TBIs from UHN and their caregivers.
The researchers began by interviewing patients and caregivers and looked for common subjects that came up, such as long-term outcomes and how their sex and gender impacted the roles they had in their lives.
They also consulted the end users after creating the graphics. The group offered feedback that some visuals were too visually cluttered and confusing, so the researchers simplified them. They also pointed out that some of the graphics weren’t inclusive.
“We got a lot of feedback on incorporating evidence and experiences of people who identify as nonbinary and gender diverse,” says Tylinski Sant’Ana. “That was a challenge because, in TBI research, there’s very little representation of those groups.” As a result, they turned to science from other healthcare areas to better represent those experiences.
One example was a graphic about relationships, which showed two adults with two children between them and a heart around the group. Informed by the feedback, the researchers changed the relationship graphic from that icon of four people in a stereotypical family to three adults in a circle, with a heart between them, to encompass different types of families and non-familial support such as friends.
Tylinski Sant’Ana is hopeful that outlining the process will help other researchers better understand the needs of their audience. “We’re hoping that researchers will be able to implement this process and develop different products,” she says. “In the larger picture, we would like to inspire other researchers to leverage the scientific evidence and create meaningful products.”