The study, published in Diabetes Care, was done in four focus group sessions, two with 16 adults with type 1 diabetes and two with 14 of their spouses.
The intent was to gather preliminary information to guide future research in an under-studied field, says researcher Paula M. Trief, PhD, professor of medicine at the State University of New York Upstate Medical University in Syracuse.
"There is literature on the importance of relationships for patients with type 2 diabetes, but very little research on psychological and psychosocial issues of adult type 1 patients at all. They get a lot of attention when they’re kids, then it just drops off completely," she says.
In some cases, having the patient bring the partner to an office visit could allow the doctor to explain concepts to the partner as well, Trief says.
In the focus groups, both patients and partners were asked two broad questions, followed by free-flowing discussion:
- “What are the emotional and interpersonal challenges you have experienced because you have (your partner has) type 1 diabetes?”
- “How does the fact that you have (your partner has) type 1 diabetes affect your relationship with your partner, positively and/or negatively?”
Partner involvement ranged from very involved and supportive to “help when asked,” in which the partner is helpful when called upon but otherwise not involved.
Emotionally, most patients expressed positive feelings toward the level of support they received from their spouse and a sense that the condition had brought them closer together.
However, a smaller group mentioned a negative impact from the diabetes, including problems such as increased emotional distance, sexual intimacy issues, and concerns about caring for young children in the face of the constant threat of low blood sugar, called hypoglycemia.
Indeed, hypoglycemia emerged as a primary concern, despite the fact that none of the patients were unaware of the problem or were at any greater risk for hypoglycemia than is typical of type 1 diabetes.
Partners in particular described “significant worry, stress, and anxiety about hypoglycemia and frustration in trying to prevent or manage it, e.g., the need to carry snacks, to remind and check during lows, and prearrange for emergencies,” the researchers write.
Worry about future complications was a second major concern, with patients expressing the need for support without blame from their partners. Other challenges that emerged in the discussions included issues around exercise and weight control and “wrestling with insurance companies.”
“The cumulative toll of management may be more than the sum of individual stressors,” Trief and her colleagues write.
On a more positive note, participants often mentioned the benefits of technology, including insulin pumps and continuous blood sugar sensors. Most mentioned the improvements in quality of life from these devices, such as greater freedom and decreased burden of multiple injections.
However, in some cases the technology made the partner feel less involved with the patient's self-care, with some not knowing how to work the devices or what to do if there was a problem. “That kind of surprised me, though it wasn’t necessarily negative,” Trief says.
Trief says this preliminary information serves as a springboard for further research.
In the meantime, she advises doctors: “If you’re thinking of understanding the whole patient, that means understanding their relationships.”