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September/October 2008 Issue

Diabetes Management In Young People — Family Matters
By Barbara Worthington
Social Work Today
Vol. 8 No. 5 P. 18

High levels of family involvement and support contribute to successful management of a rigorous diabetes regimen.

Diabetes imposes significant lifelong demands on patients intent on maintaining both glycemic control and quality of life. Consistent family support plays an integral part in adherence to an effective disease management regimen whether children, adolescents, or adults face the challenges that diabetes presents.

The prevalence of diabetes in the United States continues to increase for all ages, according to the American Diabetes Association. In 2007, 23.6 million children and adults, or 8% of the nation’s population, had diabetes. Last year alone, 1.6 million new cases of diabetes were diagnosed in people aged 20 or older. Among those under the age of 20, 186,000, or 0.22% of those in this age group, have diabetes.

Regardless of age, persons with diabetes face issues related to intensive disease management, lifestyle modifications, potential complications, and psychological adjustment.

A study published in the October 2005 issue of Diabetic Medicine examined the emotional concerns and self-management behaviors of 5,104 adults with type 1 and type 2 diabetes from 13 countries, including the United States. Researchers discovered that the majority of patients in nearly all countries believed they were unsuccessful with their diabetes management.

With the dramatic increase in type 2 diabetes among children and adolescents, researchers are identifying and examining psychosocial barriers to type 2 diabetes management among young persons in an attempt to reduce the risk of associated complications.

The first study of its kind, conducted by Wendy Auslander, PhD, a professor of social work at Washington University’s George Warren Brown School of Social Work in St. Louis, aims to identify barriers to effective diabetes self-management and glycemic control among African American adolescents with type 2 diabetes.

A Family Affair
“Diabetes is the model self-management disease,” says Auslander. It’s up to patients and their families to take care of diabetes, not the physician. “It’s a very unique situation where psychological, social, economic, and lifestyle factors really play a big role in how things go.”

The overall demands of diabetes management are all self-management tasks, including monitoring blood glucose, taking medications, maintaining physical activity, adhering to dietary adjustments or restrictions, and interacting with the healthcare team. “It’s a complex treatment regimen,” Auslander admits. “It can be stressful.”

It’s for that reason that Auslander says people with diabetes need continual support. The diagnosis itself can affect people very differently, she adds. Young children may not have the same issues about their relationships to their peers as adolescents. They often don’t feel so different psychologically or emotionally as do their adolescent counterparts.

For those navigating the land mines of adolescence, adjustment to diabetes management can be overwhelming. “Adolescence has its own set of challenges,” says Auslander. Many adolescents diagnosed with diabetes feel psychologically or emotionally isolated, frequently unwilling to share the diagnosis with their friends.

They can’t indulge in the same popular treats, such as candy and soda, that their peers routinely enjoy. “The dietary plans that some of the children and adolescents need to follow make them feel even more different,” Auslander explains. It often takes quite a while for adolescents to adjust.

A lack of support creates a significant barrier to successful diabetes management, according to Auslander. Such support can come from a variety of areas, including families, friends, school personnel, work colleagues, and even extended family. Taking care of diabetes—and doing it on a daily basis—requires a significant support system.

Effective diabetes management encourages organization, autonomy, responsibility, and social integration, according to Auslander. “There are ways to modify the treatment regimen so young people don’t feel like they can’t do things other youths do,” she says. “Children are very adaptable. Eventually they get to a place where they say, ‘That’s life,’ and learn to adjust.”

It’s critical to set the stage for success, says Auslander. “Give them the tools and positive reinforcement, and they build on that. When anyone succeeds at anything and gets a pat on the back, they feel better about themselves,” she says.

Diagnosis Fallout
For children and adolescents, a diabetes diagnosis can be overwhelming and frightening. It may prompt young people to assess self-blame or wonder what they did wrong.

Among adolescents with diabetes, the single most important issue is feeling different from their peers, according to Barbara J. Anderson, PhD, a professor of pediatrics at Baylor College of Medicine in Houston. Disease management requires a healthful lifestyle plan along with physical activities to promote weight loss.

Although parents are most likely to manage diabetes in children, adolescents assume more of the burden and responsibility of their disease management. This can be overwhelming and easily lead to ignoring management strategies and to health-destructive behaviors, according to Anderson.

Since diabetes requires so much thought and attention, such as checking blood sugars, taking medication, and considering carbohydrates and fat content before eating, adolescents are forced to do things their peers don’t, says Anderson. Whether the diagnosis occurs in childhood or adolescence, young persons with diabetes become acutely aware that diabetes is a lifelong disease. Some may even perceive that their bodies are somehow “damaged” or that something is wrong with them, she says. This perception can easily lead to depression or anxiety.

Adolescents face a particularly difficult adjustment to a diagnosis of diabetes, agrees Julane Petroy, MSW, LSW, a pediatric social worker at Riley Hospital for Children in Indianapolis. “Adolescents are particularly vulnerable to a new diagnosis of diabetes,” she says. “They are beginning to become autonomous. After the initial shock of the diagnosis, it is difficult to come to terms with the idea that this is forever.”

Petroy says adolescents sometimes see parental involvement as criticism or an indication that the adolescent can’t be trusted, sparking feelings of self-doubt, blame, and anger toward parents and themselves.

“Diabetes is a manageable disease and when families receive quality education about [diabetes] and carry it out at home, there are no physical limitations,” says Naketa R. Thigpen, LSW, a social worker at the Diabetes Center for Children at the Children’s Hospital of Philadelphia. “We explain to all newly diagnosed patients and their parents that diabetes is a family disease,” she says.

Thigpen reviews developmental milestones with all families, focusing on diabetes management. She encourages children under the age of 6 to check with parents prior to eating anything. For children between the ages of 7 and 10, she encourages them to read food labels, problem solve with food items, and check with an adult if they’re unsure about food choices. She finds that preteens are adept at following meal plans, adjusting for carbohydrates, and making appropriate substitutions. And adolescents between the ages of 15 and 18 possess all the skills at each of those levels.

If the family is involved to a high degree, the child or adolescent should need routine outpatient appointments only every three months for follow-up. “Diabetes is not an illness that should be equated with frequent hospital stays or emergency room visits,” says Thigpen. “It is very manageable at home when done correctly.”

Potential Problems
Children and adolescents face numerous psychosocial barriers to effective diabetes management, says Petroy. Such barriers include denial, embarrassment, anger, resentment, isolation, anxiety, guilt, and depression. “As with any chronic disease, the psychosocial barriers come in roller coaster fashion and bring unique challenges at each developmental stage,” she says.

Just when adolescents’ autonomy and independence become part of their normal developmental process, feelings of invincibility often lead to risk-taking behaviors, she notes. For adolescents with diabetes, that may equate to failing to take insulin or perform blood glucose checks.

Also in play are economic barriers to effective disease management, says Auslander. “Diabetes is a very costly disease,” she adds. Patients may find their ability to manage their diabetes influenced by healthcare insurance, or lack of it, costs of diabetes supplies and medications, and even access to quality healthcare.

Some of the best available technology may not be covered under an insurance plan, Auslander says. And diabetes supplies, such as glucose strips, are very expensive. “A lot of people are not taking their medications or not testing as often as they should,” she says.

According to Auslander, chronic stressors such as mental health issues, comorbidities, and various daily stressors often influence patients’ ability to adequately cope with management strategies. Different settings and environments can make adherence to diabetes regimens particularly difficult, she notes.

Educational barriers enter the equation as well. “Diabetes is a complicated disease to manage,” says Auslander. Inability to read instructions or follow directions creates a negative impact on disease management. “Even reading food labels demands a certain amount of knowledge,” she says.

Culture should also be considered, Anderson says. Ethnic cooking practices, lower levels of literacy, and limited health literacy have the potential to derail the disease management process.

Psychosocial barriers to diabetes management differ among white, African American, and Hispanic groups, often according to their socioeconomic and educational levels, as well as their life experiences with control over diabetes and incidence of complications, says Anderson.

Family folklore may include stories of relatives who lost limbs or experienced blindness as a result of diabetes. “It makes them believe in the seriousness of diabetes,” Auslander says. “It seems to be motivating to kids.” Adolescents display particular vulnerability to worry and concern about their future and the possibility for disabling complications, she says.

Attitudinal issues can likewise serve as barriers to disease management, Auslander says. For example, traditional ethnic diets may work against remaining healthy. “Different families have different ideas about how family routines overlap with the tasks of diabetes management,” she adds. It’s important, for instance, that Italian families recognize that huge pasta dinners are not compatible with effective diabetes management.

“Cultural assessments can help determine patients’ beliefs, values, and practices that might affect diabetic care and behaviors,” says Petroy.

Promoting Success
“Many children and teens are very resilient and begin to develop the skills needed to manage the illness shortly after diagnosis, though family support and parental ability to manage the child’s needs will often predict the child’s lifetime ability to manage his or her diabetes,” says Cindy Barnett, LCSW-C, a clinical social worker at the Pediatric Specialty Clinics of Johns Hopkins Hospital in Baltimore.

She says, “Adjustment problems may develop in children and families because of poor social support, poor coping skills, family dysfunction, and lack of healthcare beliefs.”

Ensuring that family members are educated on appropriate diabetes management is key to developing a management routine, says Thigpen. She advocates education and nutrition refreshers and, after ruling out the possibility of misinformation or lack of education, recommends supportive counseling.

Some children and adolescents require short-term intervention, providing a safe place to vent their concerns. Others may display symptoms of true clinical depression or eating disorders, requiring more in-depth intervention and specialized counseling, Thigpen says.