Type 1 Diabetes Puts Strains on Marriage

Miriam E. Tucker

March 13, 2013

Fears about hypoglycemia and about future complications are major issues for married couples in which one partner has type 1 diabetes, a small focus group study found.

The findings were published online March 8 in Diabetes Care by Paula M. Trief, PhD, professor of psychiatry and behavioral sciences and professor of medicine at the State University of New York (SUNY) Upstate Medical University, Syracuse, and colleagues.

The qualitative study was conducted in 4 focus group sessions, 2 with 16 adult type 1 diabetic patients and 2 with 14 of their spouses. The intent was not to generate hard data but to gather preliminary information to inform future quantitative investigations in an understudied field, Dr. Trief told Medscape Medical News.

"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 said.

The findings of the current study suggest that patients' personal relationships can affect the clinical course of their diabetes and that physicians should ask patients how things are going at home. In some cases, having the patient bring in the partner to an office visit could allow the physician to explain concepts to the partner as well, Dr. Trief suggested.

Two Broad Questions

The focus groups were held in the evening, at a multidisciplinary diabetes care center. Participants were paid $50, plus mileage and dinner. Each session lasted 1.5 to 2 hours.

Both patients and partners were asked 2 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 less involved because the patient takes care of the condition himself or herself to "help when asked," in which the partner is helpful when called on but otherwise not heavily involved.

Emotionally, most patients expressed positive feelings toward the level of support they receive 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 hypoglycemia.

Indeed, hypoglycemia emerged as a primary concern, despite the fact that none of the patients had hypoglycemic unawareness 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, eg, the need to carry snacks, to remind and check during lows, and prearrange for emergencies."

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," Dr. Trief and colleagues write.

On a more positive note, participants frequently mentioned the benefits of current technology, including insulin pumps and continuous glucose sensors. A majority mentioned the improvements in quality of life afforded by 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," Dr. Trief said.

Future Research

Dr. Trief told Medscape Medical News that this preliminary information serves as a springboard for further quantitative research. "You can't draw conclusions from focus groups. Qualitative research is really to help you formulate ideas and think about what you want to look at in quantitative research in terms of interventions."

She is now pursuing that in a recently established nationwide database of patients with type 1 diabetes called the T1D Exchange. Funded by the Leona M. and Harry B. Helmsley Charitable Trust, the database currently includes data for more than 26 000 patients with type 1 diabetes at more than 65 centers across the country, providing a rich source of type 1–specific data that were not available before, given the small size of the population compared with type 2 patients.

At the upcoming American Diabetes Association's annual scientific sessions in June, Dr. Trief will be presenting quantitative findings on the impact of partner interactions on glycemic control, based on data from approximately 1300 patients.

In the meantime, she advises physicians: "If you're thinking of understanding the whole patient, that means understanding their relationships."

This study was supported by a grant from the Department of Psychiatry and Behavioral Sciences at SUNY Upstate Medical University. The authors have disclosed no relevant financial relationships.

Diabetes Care. Published online March 8, 2013. Abstract