Barbara Anderson, Ph.D., is a clinical psychologist and professor of pediatrics at the Baylor College of Medicine, a premier academic health science center in Houston. She is the recipient of the 2003 American Diabetes Association's (ADA) "Outstanding Educator in Diabetes" award and her distinguished career includes work at the renown Joslin Diabetes Center.
Anderson's expertise is in helping families traverse the stages a child with diabetes will go through during adolescence. Long an admirer of her work, I first met Barbara this summer at the Children With Diabetes "Friends for Life" conference.
This is the 12th in my series of profiles on diabetes change leaders.
Q: As a psychologist how did you end up working in diabetes?
Barbara Anderson: I was working in St. Louis when Dr. Julio Santiago. One of the architects of the Diabetes Control and Complications Trial, called me and said, "I want you to apply for this job in diabetes." I said, "I don't know anything about diabetes!" He said, "We need somebody who understands child development and family adjustment and that you know. The rest I'll teach you."
Q: What were your first impressions working with families who have a child with diabetes?
BA: How much developmental understanding was needed. Early on, a father of a 3-year-old boy who'd just been diagnosed told me, "My wife finally figured out how to get our boy to eat and know how much he actually eats. We tie him to his high chair and we put the high chair in the bathtub. That way when he throws his food we can use a spatula and get it up off the bathtub and put it back on his plate. That's what you meant by diabetes control, right?"
Q: That's quite amazing
BA: In the 1970s and early 1980s you have to realize there were so many things we didn't know. For example, the fact that growth hormones in puberty act as an antagonist to insulin. If your child's going through puberty they need more insulin because of growth, not necessarily because they're eating too much or did something wrong. Unfortunately, many endocrinologists back then blamed parents and then some parents blamed their kids. There were really inappropriate expectations for parents and children.
However, despite the advice of health care teams 25 years ago, occasionally I'd see a parent who'd stay very involved with their child, and these kids did better. They were in the hospital less, their blood sugars were better and the family seemed better. So I developed an instrument to measure "shared responsibility." It was one of the first studies to show that developmentally-appropriate parent involvement is a positive thing for teenagers with diabetes.
Helping a teen with this complicated disease is the best thing you can do for a child's physical, emotional and social outcomes. Moreover, we know that for all adolescents, with or without diabetes, the biggest predictive factor that keeps kids away from high-risk situations like unwanted pregnancy, drug abuse or juvenile delinquency is parent involvement. It's no different for teens trying to achieve good diabetes management.
Q: Is there a framework for what parents should do as their child goes through adolescence to young adulthood?
BA: I'd like to tell you yes, but not really. It basically depends on the maturity of the child. You can't say do this with 5-year-olds and this with 10-year-olds because some 10-year-olds have the maturity of a 20-year-old and others a 2-year-old. It depends on a child's ability to control their impulses, plan ahead and organize.
Parents should, however, maintain as much involvement as possible through their child's puberty. Roughly ages 12 to 15 is when diabetes is hardest to manage. A child's dose of insulin may double, kids need to check their blood sugar more often, see their diabetes team more often and hormones are flying around, impacting moods as well as blood sugar levels. All of a sudden parents are having power struggles and privacy issues with their child, and peers become more important than you. But stay involved. Thirteen-year-olds don't have the 'emotional muscle' to give themselves their own insulin shots, not week after week.
We also know when kids are given responsibility too early they often burn out. By staying involved through puberty you give your kid a real foundation of supported-experience in managing diabetes. Your 15 or 16-year-old will then have had some success and learned that diabetes is not a big noose around their neck.
Q: How should parents be involved?
BA: Without blaming. When you see a 300 blood sugar on your child's meter don't say, "What did you eat?!" Ask, "What do you think we should do?" "What did the doctor/diabetes educator say to do?" Have a problem-solving conversation about it. Parents should expect to see 300 and 400 blood sugars and not define their child's worth from his blood sugar or how well he's managing his diabetes.
Q: What about transitioning practical aspects of care like handing over the giving of shots to your child?
BA: Kids will usually start giving themselves their own shots when they want to. Usually this happens when they want to spend the night with friends or go on an overnight scouting or school trip. I suggest parents do a dress rehearsal. Tell your child, "Let's pretend from right now for the next 24 hours you're at your friend's house or on a trip. I want you to take over your diabetes now, but I'm here if you want to ask any questions. When you're at your friend's house, if you don't know what to do, just call me." Kids should have some "practice runs" in managing diabetes on their own while parents are there to help.
Q: Is there anything parents shouldn't do?
BA: I think the biggest mistake many parents make is taking for granted that their child will just naturally do what they need to do for their diabetes. Sometimes parents forget the importance of just putting their arms around their child and saying, "I know it must be hard to have diabetes, but I want you to know I'm proud of you for keeping at it." It's a lot to be 13-years-old, have braces, pimples and no friends and also have diabetes. Tell your child that you're proud of them, not necessarily because of their blood sugar numbers, but because they're trying.
Q: What else should parents know?
BA: Too often parents think that if they just do the things they've been told to do their child's blood sugar will stay right around 100. No one has told them blood sugar levels continually vary, and that's true whether or not one has diabetes. Most parents think of blood sugars like body temperature, that it should be stable all day, but they're not.
Then parents hear all the time that normal blood sugars prevent complications, so what do they want? Normal blood sugars all of the time. But if you have diabetes you're not going to have normal blood sugars all of the time. So many parents start off on the wrong track, with unrealistic expectations. They're also terrified, and they may be working with a well-meaning doctor who doesn't know diabetes that well and gives them an unrealistic picture of what to expect.
One of parents' greatest challenges is to live with diabetes' ambiguity. Everything keeps changing, especially with a child who is growing and changing. Yet the biggest myth the diabetes community often gives to families is that diabetes is entirely under our behavioral control. Like if you just do these things, everything's going to turn out fine. You can do them all today and blood sugars will turn out fine. Tomorrow you do the very same things and nothing works, your child's blood sugars are high all day. If parents think it's all under their control they're going to drive themselves and their child crazy.
Q: How does having a child with diabetes impact parents' relationship?
BA: Some couples get blown out of the water and pulled apart, for others it brings them closer. Some of the best partnerships I've seen are divorced parents because they both take an active interest -- they both come to clinic visits. Mostly, whatever parents' relationship was before the diagnosis, it tends to stay in that track. That said, healthcare providers can help with stability by educating both parents so they can work together.
Q: What can parents do regarding siblings so they don't feel left out?
BA: I recommend parents sit down with their other children soon after the diagnosis and tell them the basics about diabetes. They're interested, they care and they're frightened. Then let them know you'll probably have to spend more time with your one child because diabetes demands so much attention, but you love all your children equally. Then spend some one-on-one time with your other children. That goes a long way to help siblings feel important too.
Q: Now that more children are getting type 2 diabetes do you work differently with parents of children with type 2 diabetes rather than type 1?
BA: Absolutely. For one reason, the disease process is so different. For instance, if you have type 1 and don't take your insulin for a couple of days you feel like crap and it can be dangerous. If you have type 2 and don't take your Metformin for a couple of days your blood sugar levels do not rise as dramatically as in type 1 diabetes, and a child with type 2 might even feel better because Metformin causes some patients gastro intestinal distress.
Secondly, 95 percent of the children in the U.S. who have type 2 diabetes are from a minority ethnic group in a lower socio-economic status. You could almost say these children's major chronic disease is poverty. Poverty leads to very different parental resources and practices.
The first thing I do is listen for family routines. Mom may be working two jobs and her 14-year-old, who just got type 2 diabetes, may be making dinner for three younger siblings and putting them to bed.
With families of lower economic means, parents frequently can not be as involved in their child's diabetes management. The family may be struggling with other threats like losing their home or their electricity or phone being turned off. For this family, the most important thing is that they get their child to take his medicine every day. So I work on things like having mom or dad call their child when they're not home to see if he took his diabetes medications.
Q: You never expected to go into diabetes yet you haven't left.
BA: All children need a stable, secure family home-base in order to thrive and I really love helping families achieve this when they are also coping with the complex daily demands of parenting a child with diabetes. Then too, I'm intrigued by all I still have yet to learn as two little boys made me aware in a sibling group I was recently running!
Among Anderson's ground-breaking work is moving the clinician-patient interaction from one of domination to one of listening. It is epitomized for me in this article she wrote which was adapted from her "Outstanding Educator in Diabetes" award address, "Cowboys and Horse Whisperers: Changing Paradigms of Diabetes Education and Care."
Riva is the author of "50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It" and "The ABC's Of Loving Yourself With Diabetes." Visit her website DiabetesStories.com.