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.
Debi Mertlich, MSW, and Michael A. Harris, PhD
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.
Learning Curve
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.
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