An Alberta-based study is focused on changing the conversation between health-care providers and patients living with Type 1 diabetes, after discovering that many people living with the disease have faced some sort of trauma while dealing with the health-care system.
Reshape T1d is hoping to shift the focus using people’s lived experience as a guiding factor.
The unique study involves patient partners that have been involved in everything from crafting study questions, to providing feedback and going over the findings.
“We started the research by bringing people from the community together to have a conversation about what that might look like,” Jamie Boisvenue, scientific lead for the study, told Global News.
“When you live with Type 1 diabetes, you enter into a lifetime commitment with the health-care system that you didn’t really want.”
More than 40 people living with T1d across Alberta took part and although each story is unique, they are some commonalities among patients.
“I think the common themes across our data is that people have experienced real traumas,” Boisvenue said. “The initial diagnosis of Type 1 diabetes really sets the stage for how a person interacts with the health-care system.”
Some of the emotions that were common include frustration, exhaustion and feeling the burden of living with a chronic condition.
The study hopes to increase trust between patients and health-care providers to eliminate some of those issues by using lived experiences.
“Having your insulin pump taken away from you in hospital because it’s the responsibility of the health-care staff to make sure that you are managing or make sure that they are managing your blood sugar for you, that is a very vulnerable state for individuals,” Boisvenue said when asked for an example of what some patients had been through.
“It’s like having a limb taken away from you.”
Boisvenue said “there are instances where those moments and those circumstances make people feel as though they are not in control.”
Dr. Rose Yeung is the principal investigator on the project, but she is also a practising physician. She said what she has heard so far has already impacted her own interactions with patients.
“It makes me more humble and reflective of how I approach people,” Yeung said. “It makes me build my empathy more and it makes me a better physician.”
Yeung said that sometimes in the rush of the health-care system, the patient’s voice can get lost.
“We are busy putting out fires and doing things in accordance with the health system, but we aren’t listening to the people that are being affected by the changes as much,” Yeung said. “This was a way to put those voices at the forefront.
“It’s not all about the drugs and it’s not all about the therapies … It’s about building that therapeutic relationship and that trust and that understanding.”
Boisvenue had some difficult conversations with the people he interviewed. He hopes that vulnerability will also be shown to doctors when they are one-on-one with patients.
“You need to be able to have a safe space where you can have an open dialogue and be vulnerable with your health-care provider,” he said.
“There are instances in people’s stories where that’s not happening, so that tells me that we still have work to do.”
One of the other challenges the project faced was how to communicate the science to the non-scientific community.
They came up with using a creative medium to better communicate what the data was telling them, whether it’s clinicians, other patients or the general public.
That’s where Jasmine Maghera comes in. The artist has lived with diabetes for the past 15 years.
“Being diagnosed with Type 1 diabetes can be quite traumatic,” she told Global News.
“It was worrying to me that other people might be experiencing the not-so-great parts of it, so I thought it was important for my voice to be heard.”
She has been involved as a patient partner with the project since its inception. Now she’s working to create nine different art pieces to convey some of the major themes that came out of the study.
Some of the work is titled Frustration, Exhaustion, Unrecognized Burden, Knowledgeable and Technology Burnout.
“They all resonate with me and it’s kind of kind of scary that everyone is feeling the same way,” Maghera said.
The work is meant to evoke emotion and empathy in those who may not understand what it’s like to live with a chronic condition.
“I’m hoping for a kinder world and a more empathetic world where people are a little bit more educated,” she said.
The results of the study haven’t been published yet. Once they are, researchers will work with clinicians and other health-care providers to implement the recommendations.
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