A Difficult Age for Diabetes
The teenager's quest for independence is at odds with a chronic condition
Goals of the home-based intervention study included helping teens and their families to understand that diabetes is a family issue and to change behaviors as they occur at home.
Kevin Lammert Jr. seems like a typical 17-year- old high school seniorhe's looking forward to graduation this spring and to attending college next year. But Kevin has one concern that sets him apart from his peers. He has diabetes, a chronic medical condition that demands a level of personal responsibility that isn't required of most teens.
Individuals with diabetes must monitor their blood sugars and diet on a daily basis, take regular medication and routinely seek treatment for their disease. The teenage years, typically a time for breaking away from authority, can make this necessary vigilance and dependence a source of tension between teens with diabetes, their families and the doctors and other medical professionals who care for them.
In a recent study, researchers at the School of Medicine reached out to these teens and their families to help them open the lines of communication and develop better problem-solving skills. They targeted teens who had consistently poor metabolic control and who had routinely missed clinic appointments. Using a home-based approach that combined psychology and social work, the researchers worked with 18 families over five-week periods. The two-year study was supported by the Washington University Diabetes Research and Training Center, one of six centers nationwide funded by the National Institute of Diabetes and Digestion and Kidney Diseases.
Diabetes is all-encompassing, says Michael A. Harris, PhD, research associate and staff psychologist in the department of pediatrics' division of endocrinology and metabolism. It's chronic, includes dietary issues, requires medication, and can pose both acute and long-term danger. It touches on every aspect of a person's life, including family and peer relationships as well as school and general day-to-day functioning.
It can be hard for teens to deal with their diabetes, he says, for the same reason that it can be difficult to be a teenager. Teenagers want autonomy, and diabetes forces them to interact with and rely on others, most notably their own parents.
Teens with diabetes need their parents to help them get supplies and to take them to appointments, says Harris. Every three months, they are required to communicate with the medical team.
And the challenges are not just psychological. The hormonal changes of puberty also can make diabetes biologically unstable.
It's about being different, Harris explains. Teenagers just want to go the football game or to McDonald's, they don't want to stop to think: 'Did I take my insulin?' or 'What can I eat at this restaurant?'
Kevin Lammert agrees. Not wanting everyone to know I have diabetes for fear of being looked down on and the extra planning and preparation it takes to do things with friends are the most difficult things about having this disease, he says.
More serious health risks that teens face, such as drug or alcohol abuse, pose an even greater risk for diabetics. Alcohol and drugs affect blood sugars, and for someone with diabetes, these behaviors can result in long-term physical damage.
But teenagers shouldn't have to face these issues alone. Goals of the home-based intervention study included helping teens and their families to understand that diabetes is a family issue and to change behaviors as they occur at home.
Each family that participated in the study completed a baseline questionnaire before intervention, underwent 10 family therapy sessions, and completed two post-study follow-ups. The teens chosen for the study represent those who are most at risk for hospitalization, medical complications and other poor outcomes, such as missing school due to illness. Most of the families studied had already undergone other medical and psychological interventions without success. Harris wanted to determine why these particular families struggled and what could be done to help them.
Debi Mertlich, MSW, a graduate of the university's George Warren Brown School of Social Work, conducted the majority of the home-based interventions. The twice-weekly visits lasted one and one-half hours, and each was videotaped for later review by Harris.
The therapists met with families at their homes to obtain a more accurate picture of each family's lifestyle and to assess its impact on management of the teen's diabetesfrom the types of food in the pantry to interaction between particular family members.
In one case, Mertlich was able to accompany a family to the grocery store to help them make healthier food choices. In another, she met with the friends of a teen with diabetes to educate them about the disease.
This informal approach puts teens and their families at ease, making the overall goal of improving the youth's metabolic control more attainable.
The researchers found that many factors contribute to poor diabetes management. In some cases, economic difficulties prevented families from seeking proper care; other families were dealing with multiple life stresses, putting the management of diabetes lower on the list of concerns. Simply put, they were dealing with the same challenges that many families face, but with the added burden of a serious medical problem.
In the study, we learned that parents are often fearful and frustrated around the issue of a teenager's diabetes, says Mertlich. That frustration sometimes leads them to either attempt to overcontrol the situation or to just drop out and let the teen handle it. The key, she says, is to teach parents and teens to communicate better so that the parent can continue to stay involved by providing structure, while the teenager is given the freedom to manage his or her own diabetes.
Through their participation in the study, Kevin's parents, Debbie and Kevin Sr., have learned how important it is to respect their teenager's independence. I've learned to stand back and assist only when asked, says his mom, though she admits this can be difficult.
Overall, parents in the study reported improved performance by their teens, but the teenagers themselves said things remained unchanged after treatment. No significant change in health status has been noted.
Every family I've worked with has said that they were able to communicate and problem-solve better while I was there, says Mertlich. Now we have to find a way to make that last longer.
To do so, the researchers will further analyze the data to determine the qualities of the families who did show improvement. In a future study, Harris and Mertlich hope to apply a broader approach that will expand the treatment group and include collaboration with systems beyond the family, such as schools and hospitals.
As for Kevin, he reports that the study taught him the importance
of developing good health habits for life, and that he must attain the
discipline to make that goal a reality. Assuming new responsibilities
and learning to balance thempart of any young person's lifemakes
him not so different after all.