Taking ResponsibilityWednesday, July 03, 2013
One of the most difficult things a child or teen with diabetes can do is begin to make the transition to self-manage their disease. The ebbs and flows of taking on responsibility is fraught with ongoing challenges, whether it is a young child taking on self-management while living at home or a teen who moves away to college. Providers and people with diabetes weigh in on the difficulties as well as the strategies needed to transition to self-management.
By: John Parkinson, Clinical Content Coordinator, DiabetesCare.net
Eliot LeBow’s earliest memories of type 1 diabetes are when he was six years old and he was in the hospital. Sitting in his hospital bed, LeBow made the decision to do his first insulin injection himself. He was determined to do the first shot and not have his parents or one of the nurses give him the shot. This was a harbinger of LeBow’s future self-management independence at a young age.
When he was released from the hospital, LeBow was given a very strict diet where he had to eat the same food and quantity every day. This was also the mid-1970s, so people with type 1 were counseled differently.
LeBow’s father titrated his insulin and helped him administer his shots for the next two years and then LeBow decided to take charge. Still, at eight years old he was on his own in terms of his diabetes management. Through his own personal experience of dealing with the various challenges he saw, some of the mistakes, and personal growth, he sees some of the things that he wished he could have done differently. For example, being given the autonomy to take care of his diabetes at such a young age caused him personal conflict. “At times I didn’t take care of myself, because the sustainability of being an adult at that age was just not possible,” explains LeBow. “So when my parents were around I went into adult mode; when they weren’t around, I went right back into childhood. If I was around my friends and they were eating cake, I was eating cake, and there wasn’t an insulin adjustment. However, after being sick enough, I did start adjusting.”
Along the way, he learned through trial and error, like many others. Today, LeBow, LCSW, is a diabetes-focused life coach and psychotherapist as well as founder of DiabeticTalks an online resource that helps people with diabetes cope with their emotions. In his private practice, he specializes in treating teens and young adults with diabetes.
When is it Time?
The question of when is the right time for a child or teen to take the first steps and begin the road to self-management is one based on various factors, according to Amy Hess-Fischl, MS, RD, LDN, BC-ADM, CDE. “We know it comes down to maturity and parental involvement versus chronological age, so we can’t necessarily say all children at age X are ready for self-care,” states Hess-Fischl. She is an advanced practice dietitian and coordinator for the University of Chicago’s Kovler Diabetes Center Teen InTransit program. She helps patients and their families deal with the transition to self managment.
LeBow says aside from a child actually saying he or she wants to take on the day-to-day care, there might be some indirect signs a child is ready. Maybe communication between the child and parents starts to break down or there is disagreement around diabetes management. “There may be arguments such as how much insulin to give or parents will hear comments like, ‘I’m tired of talking about how to manage my diabetes,’” explains LeBow. “At that point, if these kids are tired of talking about it, they are likely at a stage where they are motivated to do it on their own.”
The Transition and Setting Goals
Hess-Fischl says it is important to individualize the treatment, but the transition overall should be a slow, ongoing process. “We don’t want it to be the sink or swim approach,” states Hess-Fischl.
She explains they typically begin to transition kids in her program at Kovler at around 12 or 13 years old and they begin to make gradual changes.
“Our approach is to start including the children in the conversation a lot sooner and empowering them to make small changes and add a level of responsibility sooner,” says Hess-Fischl. “Regardless of their care and their maturity, I will add one new responsibility to their care on their responsibility list every visit. Maybe they are going to camp over the summer, and I give an assignment that he or she works on, and when the patient comes back in three months we reassess. If they have been successful with that then we add another responsibility.”
Hess-Fischl also talks about keeping parents involved, but also slowly weaning them off their child’s everyday management. “For one particular patient, we were transitioning her care and she was going to do her insulin dosing and testing her blood sugar herself. We set it up in weekly increments so that her parents were not going to ask her every day about her management. By the end of the week they were sitting down for a little meeting, and then mom and dad could ask how things went, and if the child didn’t follow through on the goals that we set, we had to integrate mom and dad back in. It comes down to the kids and the parents each having their responsibilities and keeping up with them.”
Whereas, Hess-Fischl might have one young patient who is transitioning check in once a week with the parents to discuss their management, there might be other patients who need to check in with their parents on a daily basis.
Pictured here: Eliot LeBow LCSW, is a diabetes life coach and psychotherapist with a private practice that specializes in treating teens and young adults with diabetes; and Amy Hess-Fischl, MS, RD, LDN, BC-ADM, CDE, advanced practice dietitian and coordinator for the University of Chicago’s Kovler Diabetes Center Teen InTransit program.
The Value of Constant Communication
LeBow likes to involve the whole family in the transition process. “There’s a lot more riding on the caretaking. I really try to get families to work on a team approach with the child or young adult being part of the decision making,” says LeBow. “With diabetes, communication is crucial, especially with the emotional shifts that happen back and forth.”
This ongoing communication is important throughout the process because if it breaks down, it can lead to resentment and a lack of compliance on the part of the transitioning child.
LeBow says the child might think, “you don’t know what is going on with me and yet you are telling me what to do. And these kids are going to listen to their friends over their parents—even if the parents are right in what they are saying.”
Occasionally, Hess-Fischl feels like a referee between parents and teens. She says the disagreements are usually attached to a goal that wasn’t met. Hess-Fischl says teens want independence from their parents, but still need guidance, which is where a medical provider can be a huge support person. “Kids needs someone to collaborate with, and they don’t need his or her parents yelling at them,” asserts Hess-Fischl.
Diagnosed with type 1 when she was in 16, Heather Moffitt was able to take control of her self-management right away and felt her parents struck the right balance between concern and giving her the autonomy she wanted. Along with a supportive family she also had a very attentive endocrinologist. She warns that overbearing parents can have a negative effect on the process.
“It`s good to check in, but the more parents hover—especially as the kid is trying to grow—the more agitated the young person becomes,” explains Moffitt. “It can also create a sense of rebellion. When they check in too much, it makes them want to say forget this. It has the opposite effect. As hard as it is for parents and family members to let go, that is the best thing they can do.”
LeBow says primary care providers and parents certainly need to give kids who are transitioning more autonomy, but also be there to address the child’s needs.
“I do not encourage kids to become solely independent; being independent is a bad thing while growing up with diabetes. I believe patients should become intra-dependent. In intra-dependency, you are acting within a social network or a team. When you look at independence, some people with diabetes look at that and say, ‘I don’t need the help of friends, family or even the doctors.’ You actually do. You have to build a network of medical professionals you go to and who talk to each other. Maybe the child needs to go to a diabetes educator, maybe he or she is very emotional during their transition, and the child could benefit by going to a therapist. Every person with diabetes needs other medical services,” says LeBow.
Pictured above here: Heather Moffitt`s family from left to right: her father John, sister Holly, mother B.J., brother Johnny, and Heather.
LeBow also cautions that relationships with friends can be challenging for the teen in transition. “It’s hard to say, ‘hey guys can we stop for a minute I need to check my blood sugar when they are trying to go to a movie and they are running late,’” states LeBow. “It’s healthier to put their diabetes above everything else.”
These kind of situations are where a child or teen in transition may get down on themselves thinking they are different from everyone, asserts LeBow, and he says it’s important to make the distinction that every single person is different, and not just them.
The Second Transition: Moving Away From Home
In the coming weeks, countless numbers of teens will be headed off to college, moving away from home for the first time. In doing so, there will be some with diabetes and they will be going from a lifestyle with a regular routine to one that will change and their behavior will change as well. As children with diabetes grow up they become more independent with their diabetes self-management, yet they are still under the watchful eye of family.
Often, when the teen moves out of their family home it can be like starting all over again. When a teen moves away to college, for example, the freshman experience can be fraught with all sorts of situations and lifestyle changes where the teen can struggle. From their day-to-day class schedules to the foods they eat to the introduction of alcohol, there are numerous potential pitfalls for a college freshman to navigate.
Moffitt is now a development coordinator for the JDRF Los Angeles chapter, but she remembers how difficult her freshman year of college was.
“I was so diligent in high school, and in college, I let myself go,” acknowledges Moffit. “I didn’t always take my insulin. I ate whatever I wanted, and I was drinking as well. It was new for me. I knew I wasn’t supposed to be doing it.”
She had two stays at the local hospital to correct very high glucose readings in her freshman year. Still she knows she is fortunate to have not let it go on for too long, and she remembers when she hit a turning point. During the summer after her freshman year of college, Moffitt remembers going to her hometown endocrinologist and his office being surprised by her numbers. It was then she realized she needed to change. “Once I set my mind to it, my good habits and self-management came back very naturally.”
|Transitioning to College
Here are Some Tips for College Freshman:
Moffitt had a good experience with her endocrinologist at school, and she suggests asking the hometown endocrinologist or provider to recommend some providers in the city or town where the student is going to college.
This is exactly what Moffitt’s family did and they were able to sit down and meet with her school endocrinologist ahead of her first semester at school.
Both LeBow and Hess-Fischl agree that all freshman should go to the college’s disability’s office.
“It’s important to talk with them to make sure they have some accommodations set for the student,” says Hess-Fischl.
This way, if a student has a hypoglycemic episode during a test, they can get the extra time needed to correct for it and complete the test.
Ultimately, for any child or teen making the transition to self-management it’s going to be an ongoing, timely process that involves the providers, parents, and the child or teen. LeBow believes acceptance of their disease is a crucial building block that will help these kids during the transition. “Encouraging kids to feel comfortable with, and accept their diabetes, is a vital aspect. It can help them with peer issues and give them the confidence they need.”
For those looking for information on the subject, Hess-Fischl mentions the National Diabetes Education Program’s transition from pediatric to adult care website as a helpful resource for both providers and families.