A large-scale survey of family members of adults with diabetes in 17 countries identifies both positives and negatives.
The findings suggest better outcomes may be possible if family members receive support to help their loved ones with diabetes.
In the DAWN2 study, 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.
Previous DAWN2 results, published in 2014, showed that patients with diabetes experience psychological and social challenges, but that support from the community helps people cope. In the current finding, the researchers describe how diabetes affects the lifestyle of—and relationship between—the person with diabetes and the family members most involved with their care.
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 report their results in Diabetes Research and Clinical Practice.
- Family members worry about the day-to-day struggles of the person with diabetes, including concerns about low blood sugar occurrences and employment stability.
- 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.
- Family members are inspired by their loved one’s experience of living with diabetes and they may feel motivated to eat more healthfully.
“This research reveals the nature and extent of what it’s like to live with a person with diabetes,” says 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.”
The positive side:
“The most positive thing we found was that the person with diabetes inspired their family members,” Stuckey says. “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.’”
Stuckey hopes the findings will influence decision-makers in the 17 countries affiliated with the study and at the International Diabetes Federation.
“We hope that each country will take the data and change its policies,” Stuckey says. “For instance, in the US, we hope that the importance of including family members in educational sessions will be recognized and will be covered by medical insurance. This can help family members feel more informed and closer to their loved one who is living with diabetes.”
In the meantime, doctors who treat patients with diabetes can learn from the study.
“Even if monumental policy changes don’t happen, we hope physicians and other healthcare providers will say, there is something very simple I can do—invite a family member to accompany the person with diabetes at their medical visits,” Stuckey says.
DAWN2 is a global partnership among the International Diabetes Federation, the International Alliance of Patients’ Organizations, the Steno Diabetes Center, and Novo Nordisk.
Additional researchers contributed from Loyola University; Novo Nordisk A/S; Bharti Hospital & B.R.I.D.E; the University of Antwerp; Dalhousie University in Halifax, Nova Scotia, Canada; Medical University of Warsaw; Setif University Hospital; the University of Alberta; University of Perugia; and Penn State College of Medicine.
Novo Nordisk funded the DAWN2 study, including planning and designing in collaboration with national, regional and global partners.
Source: Abby Sajid for Penn State