Experts Living with Diabetes at the Heart of Diabetes Action Canada Study
By Krista Lamb
A recent study by Diabetes Action Canada researcher and recipient of the 2019-21 postdoctoral fellowship award, Dr. Ruth Ndjaboue, focuses on the expertise of those most closely involved in the diabetes community – persons living with diabetes. Aimed at helping health professionals and those living with or affected by the disease better understand how to improve self-management and care, Ndjaboue had some surprising results.
“For me as a scientist new to diabetes research, I wondered if people might point out what can be done technically for improving medical care or treatment,” she says. “But most of the people were more interested in general humanistic concerns, such as having respectful communication and people paying attention to what matters to them,” she says.
This is reflected throughout the results. The individuals who were interviewed talked less about wanting more access or improved treatments, and instead focused on the ways in which their health providers understood and acknowledged the impact diabetes has on their lives.
For those from Indigenous communities or ethnic minorities, there was an even larger focus on communication and understanding. While the words “colonization” may not have been spoken Ndjaboue felt the implications where there. “So many people said things like, “People need to know that there’s a social reason why our people, Indigenous people, have diabetes”. So, I think they were pointing to colonialism, even if the word was not used,” she says, noting that the Indigenous community members in her sample were more likely to highlight cultural safety as necessary in care.
This was an important finding for Ndjaboue. “When we are looking for ways to improve healthcare for a minority, and we have people bringing up the problem of discrimination and the problem of disrespecting care because of the way they are or because of the way they look, or any other stereotypes, it means that this is what matters the most to them. Maybe much more so than the biological aspects and the physical things,” she says.
The findings from the interviews with those who live with diabetes have been compiled into a number of considerations for healthcare professionals and for those living with this condition, which will be available soon. The recommendations focus on elements of communication such as empathy, and respect, as well as acknowledgement of the feelings and emotions that come with diabetes, and a need to provide care that is positive, supportive and engaged.
“Pay attention to the emotions of patients and caregivers,” Ndjaboue suggests to health providers. “If those living with diabetes were to comment, they will certainly say: try not to tell people only what is bad, and have a positive attitude towards diabetes to show that it’s possible to have a good life while you are managing your diabetes, it’s not always bad.”