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.
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.
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 published their results in Diabetes Research and Clinical Practice.
Researchers identified four themes:
- 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 healthier.
"This research reveals the nature and extent of what it's like to live with a person with diabetes," said 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."
Positive factors were also identified.
"The most positive thing we found was that the person with diabetes inspired their family members," 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.'"
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 said. "For instance, in the U.S., 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 said.
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Stuckey, H. L., Mullan-Jensen, C., Kalra, S., Reading, J., Wens, J., Vallis, M., ... & Skovlund, S. E. (2016). Living with an adult who has diabetes: Qualitative insights from the second Diabetes Attitudes, Wishes and Needs (DAWN2) study. Diabetes Research and Clinical Practice, 116, 270-278.