Better outcomes may be possible if family members receive support to help their loved ones with diabetes, according to a major international study with analysis led by a Penn State College of Medicine researcher.
[Photo: Dr. Heather Stuckey]
“This research reveals the nature and extent of what it’s like to live with a person with diabetes,” said Dr. Heather Stuckey, assistant professor at Penn State College of Medicine, and lead qualitative researcher. “The biggest challenge we identified for family members is that there’s a constant worry about the person. It’s in the background like an app that’s always running.”
In the DAWN2 study — a large-scale survey of family members of adults with diabetes in 17 countries — researchers looked at the experiences and unmet needs of people with diabetes and their family members and healthcare providers. Previous research has shown that family members help adults manage their diabetes, and that this support plays a role in diabetes outcomes.
A qualitative analysis is a way of examining non-measurable data — for example, a patient’s perspective – and a way to provide insight into a problem by discovering underlying reasons or motivations. More than 2,000 adult families participated in an Internet, phone or in-person survey. Two-thirds of participants were women and most were a spouse, partner or parent of an adult with either type 1 or type 2 diabetes. Researchers published their results in Diabetes Research and Clinical Practice.
Researchers identified four themes. First, family members worry about the day-to-day struggles of the person with diabetes, including concerns about low blood sugar occurrences and employment stability. Researchers also found that diabetes causes an emotional strain in the relationship between family members and the person with diabetes. Family members believe they have some support resources to deal with the burdens and lifestyle changes of diabetes, but they want more. And finally, family members are inspired by their loved one’s experience of living with diabetes and they may feel motivated to eat healthier.
“The most positive thing we found was that the person with diabetes inspired their family members,” Dr. Stuckey said. “Family members reported that the resilience of the people with diabetes was amazing. They said ‘I’m so proud of them for dealing with the disease.'”
Dr. Stuckey hopes the findings will influence decision makers in the 17 countries affiliated with the study and at the International Diabetes Federation.
DAWN2 is a global partnership between the International Diabetes Federation, the International Alliance of Patients’ Organizations, the Steno Diabetes Center and Novo Nordisk.
Novo Nordisk funded the DAWN2 study, including planning and designing in collaboration with national, regional, and global partners.