Systemic disease, system interventions

Working with patients and families who live with diabetes

By Tai J. Mendenhall, PhD, LMFT, CFT, and Max Zubatsky, MA, LAMFT

Diabetes is one of the most widespread chronic diseases in the United States; current estimates of those afflicted exceed 25 million people. Prevalence estimates have increased sixfold since the 1950s, with more than 2,500 new cases diagnosed in this country each day. Last year the Centers for Disease Control and Prevention predicted that approximately one in every three Americans may develop type 2 diabetes by 2050. And while diabetes is a chronic illness that crosses all cultural, ethnic, and racial groups, considerable health disparities continue to exist: Hispanics and African Americans are two to four times more likely, and American Indians three to 10 times more likely, to be diagnosed than Caucasians.

Principal reasons behind these statistics include Americans’ increasingly sedentary lifestyles, consumption of high-fat and carbohydrate-rich diets, and increased weight. This trend is alarming because diabetes can lead to a number of serious health problems, such as cardiovascular diseases (which represent the most common causes of death and disability in the U.S.), eye disease and blindness, kidney failure, nerve disease, and sexual dysfunctions. Family history may also serve as a hereditary risk factor for developing type 2 diabetes, in contrast to type 1 diabetes. A positive family history of diabetes confers a twofold to fourfold increased onset during one’s lifetime. Additionally, 15 to 25 percent of first-degree relatives of patients with type 2 diabetes develop impaired glucose tolerance, a prediabetic state associated with insulin resistance.

The family context — Diabetes is often called a “family disease” because its effects go beyond just the person who is diagnosed with it. As the patient is required to change longstanding habits across a wide variety of areas in his or her life, others in the household will have to do the same. For example, proper diabetes management requires careful attention to diet. As families attend to patients’ ongoing disease management and medical care, their incomes may be strained as they pay for healthier foods (which can be more expensive than unhealthy foods), copays and doctor visits, blood-testing supplies, and other expenses. Because it is easier for patients (or anyone, really) to exercise if they have someone to stay physically active with, family members are encouraged to take part—but may do so reluctantly or with resentment.

Adjusting to and managing diabetes in these ways can be very hard for couples and families. For example, some family members may feel angry or indignant about having to change their own diets, especially in light of the fact that they are not the one who has the disease. When the person with diabetes asks family or friends to attend informational forums or groups with him or her, members of the support system may struggle with feelings of infringement on their own schedules or free time. Children without diabetes can sometimes feel jealous of their diabetic siblings, who are getting more attention from parents and other family members. Patients with diabetes (from children to adolescents to adults) may feel that others’ attempts to be supportive are actually harassing, and those trying to offer the help may not know where the line is between being supportive and being a “nag.”

Systemic interventions — Thinking “systemically” means conceptualizing how any one part influences  other parts within a larger whole. In the case of diabetes, the health of diagnosed patient depends on how the connections within that person’s family and social system(s) affect—and are affected by—multiple areas of his or her life. As we advance our efforts in diabetes care, we must work to bridge our conventional, individual-oriented approaches to disease management with approaches that embrace the relational contexts in which our patients reside. This broader approach translates into a messier constellation of interventions and people (e.g., providers, family members) rather than just putting all of our eggs into one basket (e.g., medication, diet, lifestyle changes). And while it would be far easier for health care providers to work strictly with a patient on his or her medications or diet, research has shown that attending to coexisting facets of patients’ lives yields better outcomes.

 Medical treatment for diabetes should be personalized for each patient, depending on his or her overall health and presence (or absence) of diabetesrelated conditions and other diseases. The main health considerations for diabetic patients include insulin administration to control blood sugars, oral medications, drugs to lower blood pressure and bad cholesterol, and lifestyle changes in diet and physical activity.

Different types of therapy can help address a variety of biopsychosocial issues in a patient’s life. Individual therapy with psychoeducational interventions generally involves patients meeting with a physician, diabetes nurse educator, nutritionist, and/or therapist to talk about health behaviors (e.g., meal planning, exercise, regular blood sugar testing, and record-keeping) and common feelings of depression, anxiety, or stress associated with the diagnosis of and living with a chronic illness. Couples therapy with psycho-educational interventions generally involves patients and their spouses or partners meeting with a mental health provider and treatment team to learn about diabetes together and to build a sense of co-ownership and teamwork into everyday relationship functioning and disease management. This intervention also provides a safe space to identify and work through commonplace challenges and difficulties associated with diabetes  management. Using psychoeducation in family therapy applies similar techniques as those in couples therapy, but purposefully includes children, siblings, parents, and anybody else who is closely associated with (and affected by) the patient and his or her illness. A potential challenge addressed in this

 Context is negotiating developmentally normal struggles between adolescents’ desire for more independence vis-à-vis parents’ desire to be involved in disease management and care.  Social and community interventions provide opportunities for patients and their family members to connect with other patients and families. Participating in these types of interventions allows participants to access the personal wisdom and lived experiences of people who have “been there.” For example, veteran spouses can share with spouses of newly diagnosed patients how they have achieved a balance between being supportive versus nagging. Similarly, longerterm patients can share with newly diagnosed patients how they were able to adjust their diets and lifestyles in ways that are satisfying and realistic to maintain.

Tips for providers — Diabetes is most effectively managed when it is attended to by multiple people in the patient’s life. Family members (e.g., spouses/partners, children, parents) represent invaluable resources in diabetes care; providers can work to engage them in the following ways:

•  Encourage patients to bring a spouse/partner or another family  with them to doctor appointments

•  Talk about and normalize the systemic impact(s) of diabetes, along with the stress on everyone in adjusting to new routines in disease management and daily living

•  Suggest that patients and family members take part in counseling or mental health appointments, local educational workshops, and/or support groups

•  Promote exercising together

•  Encourage shopping for and preparing foods together

•  Applaud patients’ and families’ teamwork, and frame improvements in health behaviors and physiological markers as collectively earned.

When families come together to fight diabetes as a team, everybody wins.   Research has shown that patients do better in their health when their families are supportive and collectively share in disease management. Many families have described diabetes as actually having helped them to become a closer unit, as well as improving the health of others in addition to the identified patient.

Talking about foods, cooking together, exercising together, going to doctor visits together, and so forth—all help families to grow stronger.  Effective treatment of this chronic condition requires collaboration among the patient, family, health professionals, and support systems. By using this team approach, families can also serve as educational models to future generations in efforts to prevent this widespread disease.

 Tai J. Mendenhall, PhD, LMFT, CFT, is a faculty member in the University of Minnesota Medical School’s Department of Family Medicine and Community Health and an associate director of the university’s Citizen Professional Center.

Max Zubatsky, MA, LAMFT, is a doctoral student in the University of Minnesota’s Department of Family Social Science (Marriage and Family Therapy Program) and a behavioral health intern at the Broadway Family Medicine Clinic in Minneapolis.

Copyright 2011, Minnesota Physician Publishing. This article originally appeared in Minnesota Physician 25(8): 34, 36, and is published with permission.
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