Getting diagnosed with either Type 1 or Type 2 diabetes is a life-changing event. Patients need to reassess diets and learn how to manage medication, monitor blood glucose and work closely with doctors to ensure that adjustments to medications are made as needed.
In short, it requires a lot of vigilance that may either overwhelm at first or render someone weary after a while. Support from family members as well as from the community at large can go a long way toward improving patient outcomes because it can help them cope better.
Now, in a major international study with analysis led by a Penn State College of Medicine researcher, a team has taken a closer look at the experiences and unmet needs of people with diabetes and their family members and healthcare providers.
The large-scale survey of family members of adults with diabetes in 17 countries revealed how diabetes affects the lifestyle of — and relationship between — people who have diabetes and the family members most involved with their care.
More than 2,000 adult families participated in an internet, phone or in-person survey. Two-thirds of the participants were women and most were a spouse, partner or parent of an adult with either Type 1 or Type 2 diabetes.
The researchers identified four themes:
"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."
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 United States, 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, healthcare providers 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.
Researchers published their results in Diabetes Research and Clinical Practice.