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They need to control their disease, despite puberty and peer pressure
A sullen teen-age patient sits in Margaret Grey’s office with his arms folded across his chest. At his side is his mother, clearly worried. She tells Grey how her son refuses to monitor his blood sugars and "forgets" to take his insulin injections.
Rebellion is a normal part of growing up but health care professionals must help patients find outlets that will not be harmful to their health, says Grey, PhD, RN, a professor of nursing and associate dean of research at Yale University’s School of Nursing in New Haven, CT.
"We help parents understand that kids have to go through a rebellion stage and we have to help them find safe ways to rebel," she says.
The next time the boy visits Grey’s clinic, he’s sporting green hair. But he’s also started taking better care of himself. He successfully channeled his desire to express himself into a relative harmless area, even though Grey admits some parents have a hard time with green hair. "Which would you rather have? Green hair or a kid who is not taking care of his diabetes?" she asks.
Together, adolescence and diabetes can create difficult patient compliance issues. Young adults begin to establish their desire for independence but are under the heavy burden of a disease that affects every aspect of their lives.
"It’s hard enough to be a teen-ager, with all the issues of adolescence: school, relationships, friends, hormones, all those things and more. But when you overlay the burden of diabetes on top of it, it can be too much for some teen-agers," says Jean Betschart, RN, MN, CDE, a pediatric nurse practitioner at Childrens Hospital in Pittsburgh and author of In Control, a Guide for Teens with Diabetes.
It’s a time when parents and health care providers need to be present as a supportive, understanding team.
"We try to plant this seed at diagnosis: Dia-betes is a family disease, and we don’t expect [teen patients] to carry the burden by themselves," says Barbara Anderson, PhD, a pediatric psychologist at Joslin Diabetes Center in Boston. "It’s not about being independent, but about being interdependent."
Betschart adds, "Diabetes doesn’t fit well with an adolescent lifestyle." She notes that teen-agers are likely to have erratic mealtimes, go out with friends, skip glucose testing or even insulin injections, and be tempted by friends experimenting with alcohol.
Add that to the hormone swings and growth spurts that begin at the onset of puberty, and glycemic control becomes infinitely more difficult in the teen-age years. "Growth hormones are insulin resisters," says Betschart, "so it is important for health care professionals to convey to teen-agers and parents that they are not doing anything wrong,’ but that insulin needs will change and fluctuate and they will need to adjust insulin dosages."
It’s all in the attitude
Many kids with diabetes will behave as though they don’t care about their disease or what they need to do to stay on top of it. "I always remind parents that teen-agers are immortal," jokes Grey. "They live for today, and they don’t really believe anything bad will happen to them."
But under all that bravado, she says, is a great deal of fear. Perhaps the child has experienced a sobering experience with hypoglycemia, hyperglycemia, or ketoacidosis. "They do think about it; they do worry. They don’t want to go blind or need a kidney transplant," she says.
Health care providers and parents must stay closely involved as teens with diabetes progress through their adolescence, but they must also lighten up, say the experts.
Nagging and placing blame are two of the most common tactics health care professionals and parents use in dealing with young diabetics, but psychologists say such methods are almost guaranteed to trigger a rebellious reaction.
Gray says blaming a teen-ager for erratic control only worsens the problem. The coping skills training at Yale’s clinic is designed to give teen-age diabetics the tools to find their way in a very confusing world.
"The way kids cope tends not to be very positive," she says. "They tend to make bad decisions when they are with their friends." So the clinic’s counselors help teens think through situations that may arise or that have actually already taken place and find solutions. "We help them negotiate a win-win," Grey explains.
Teaching teen-agers coping skills, she says, gives them new ways to handle real life situations. For example, it’s been a long afternoon cruising the mall, and now the gang has congregated at Johnny’s house. The CDs are blasting away, and everybody’s having a good time. But it’s been a long time since they last ate, and Jennifer needs to check her blood sugar. It’s hard for a diabetic teen to keep a rigid disease management schedule to take care of the disease when others are around.
In this common scenario, chances are good someone will ask the patient why she needs to check her blood and why she needs to eat at specific times.
Grey says when faced with the risk of being conspicuous in their peer group, many kids will just put away the monitor and not check at all. Others will go into a long-winded explanation. Others will neglect to eat when they know they need food or put off an insulin injection. All of these responses can lead to backing off on diabetes control.
But Grey notes a good remedy to most of these situations is to prepare the young patient with a quick answer that friends can accept. Often, the explanation can be as simple as saying "I do these things because I have diabetes."
"I tell them they don’t have to defend themselves to people; they can just do it," Grey says. "They can make choices good for their health without laying every detail of their lives on the table."
And when teen-aged patients can go out with their friends and still follow their diabetes regimen, parents may not feel so stressed. Remember, parents also may be dealing with strong emotions surrounding their child’s health. Anderson sympathizes with them, too.
"These parents need so much help," she says. "Most of them are terrified. They care desperately, and they are afraid their children may end up blind or with shot kidneys." She cautions, however, kids aren’t going to do what they need to do if they feel as though they are being judged or blamed.
Anderson says a good first step parents and health care professionals should take is to "clean up their language," or eliminate common ways to express ideas that may sound judgmental.
"There are no bad’ sugars or bad’ foods," she says. In Anderson’s clinic, there is no talk of "testing" blood sugars, either. "We check’ them. That gives information we can act on," she says.
Getting neutral language — both in the spoken word and in body language — helps with communication between parent and child.
That takes practice, she admits, especially when a parent sees a 400 on the child’s monitor. Think of that 400 reading as "information" that helps you adjust. Anderson offers several options about what action to take next.
"Don’t let blood sugars become a cross on which kids feel crucified." Otherwise, she cautions, teens may begin to falsify their readings in an effort to escape. "The 400 reading you know about is much better than the 400 reading you don’t know about," Anderson emphasizes.
Instead, she suggests that a parent might note that the reading is "out of the target range" and then ask the teen-ager, "What do we do?"
"You can take Humilog, exercise, or perhaps recognize the reading is high because she just finished a popsicle. So maybe you need to do nothing or maybe take away from carbohydrates from the next meal," Anderson suggests.
And in the end, parents need to understand that an isolated elevated blood sugar is not going to lead to dire consequences. "Otherwise, blood sugar monitoring becomes an instrument of torture in terms of shame and blame. It becomes a measure of lack of success," she warns.
The key is in helping the child build responsibility, says Grey. "If you nag," she tells parents, "You are making yourself responsible."
Nurses and other staff at Joslin spend a great deal of time helping parents develop their own coping skills and helping them solve problems, Anderson says. "Having the support and understanding of a health care team is essential to helping parents and adolescents through the teen-age years."
She explains there are stages that seem to typically emerge as youngsters with diabetics begin to mature. Independence typically begins when a child first wants to go on a sleepover with friends, maybe at age 9, 10, or 11. "And you can be sure they don’t want Mom to show up three times during the night to give an injection," says Anderson. At that time it is important for parents to re-assess their involvement with their child’s diabetes management and begin to share responsibility, Anderson says, but not to distance themselves.
Ways to share responsibility include:
• The child checks blood sugar.
• The parent and child decide together on the dose needed.
• The parent draws up the insulin dosage in the syringe.
• The child double-checks it and then self-administers the insulin.
As the child becomes a teen-ager, parents need to find new ways to stay involved, says Annette La Greca, PhD, a professor of psychology and pediatrics at the University of Miami at Coral Gables, FL.
She suggests parents can and should:
• get the supplies the child needs;
• be sure there is fresh insulin on hand;
• offer healthy food choices in the home;
• help problem-solve with dosage adjustments;
• offer reminders when it is time to perform certain tasks.
Some teens, rather than pulling away at this time, get tired of carrying their heavy burden and want a vacation. "Obviously, this doesn’t mean a vacation from diabetes," says Anderson. "But maybe it means that Mom or Dad gives the injections for a week."
It is also helpful to make parents understand the burden their diabetic child must carry every day for life, says La Greca. Such sensitivity can be a powerful tool.
La Greca developed a week-long simulated diabetes regimen for parents. The regimen required daily monitoring four times a day, two daily injections of saline solution, proper mealtimes and healthy eating, and good exercise habits. Blood was drawn for an HbA1c at the end of the week. One parent said he couldn’t do the simulation because he was too busy; he had to be on a business trip, etc." says La Greca. "We reminded him that his daughter has to do it all the time. That’s when he decided to do it."
The simulation allows parents to see and experience how hard it is for a teen-ager to have diabetes. It also gives some of the kids an opportunity to coach their parents through the experience, and in the process, show them how much the patients really do know about managing their disease, says La Greca.
La Greca also helps parents and teens to look ahead, imagine realistic scenarios in which the their diabetes management might be challenged, and come up with some solutions in advance.
For example, perhaps the car breaks down and the teen-ager has to walk several miles and gets home late for dinner. "We’ll come up with ways to make adjustments," says La Greca. "Perhaps she could eat something fast-acting or take less insulin."
Many health care providers and parents have discovered that children with diabetes grow up to be unusually responsible teen-agers with diabetes. "The disease requires them to be vigilant and to take care of their health much more than it does for other teen-agers," says La Greca. She adds that patients tell her their friends frequently ask them for advice about healthy eating and exercise because "they know kids with diabetes know about this stuff."
Grey also notes it is the job of the health care team to find a goal the teen-ager wants to achieve and help reach that goal. While the caregivers and parents might want to see HbA1c levels of 7, that simply may not be realistic, she says.
"With teen-agers, an HbA1c of 8 is OK. You work with what you can get." In addition, HbA1c may not be the teen’s goal at all, she says. "He may just want to stop having to get up three times during the night to go to the bathroom."
It may be necessary to relax goals a bit, she says, "We’re not expecting perfection."
Praise, acceptance, and support are the watchwords that experts repeat over and over, for teens and their families and their health care teams. "If it’s not working, try something else," Grey says. "We talk about goals, but it doesn’t do any good to have the kid walk out the door giving you the raspberries."
[For more information, contact Margaret Grey at (203) 727-2420, Jean Betschart at (412) 692-8722, Barbara Anderson at (617) 732-2594, and Annette La Greca at (305) 284-5222.]