Hello! We are two nurse practitioner students, specializing in pediatrics, at the University of California San Francisco. Dara is currently in clinical rotation at the UCSF diabetes clinic. She is a nurse with Lucile Packard Children’s Hospital at Stanford’s Pediatric Intensive Care Unit. Alex has had a long interest in diabetes care in her work at UCSF Benioff Children’s Hospital Pediatric Intensive Care Unit. Last year she helped develop a DKA treatment guideline & order set for the PICU. Both of us are exploring the idea of working in this field.
For one of our classes, we chose to work on a project that looks at the transition from complete parental control of a child with Type 1 diabetes to complete autonomy of the child in the daily management of their disease. In caring for children with Type 1 diabetes, it is important for nurse practitioners to understand the importance of parental/guardian involvement in daily diabetes management.
For young children, including school-aged children, it is important for the nurse practitioner to convey to the parent that their child is developmentally unable to provide their own diabetes care despite their level of intelligence. Young children lack the maturity to fully understand the consequences of poorly managed diabetes.
For middle school and high school students, the nurse practitioner needs to work with both the parents and the child/adolescent to discuss transitioning roles from complete parental management to a shared role of management. This age group should not be expected to independently provide all of their diabetes care. This is the stage where it gets challenging because adolescents are developmentally fostering their own independence and autonomy. However, when it comes to their diabetes, they continue to lack the maturity to fully understand the consequences of poorly managed diabetes. Here’s an analogy: your child/adolescent may possess the math skills to pay your bills, but they may not possess the maturity to understand why bills are due in the first place or how to best manage your money.
As future nurse practitioners, we have posted some information on how to address these issues of transition. It is our belief that education about the management of a child or adolescent with type 1 diabetes needs to be taught to the entire family unit, with emphasis on age and developmentally appropriate self-care with the ultimate goal of gradually transitioning that care with continued adult supervision.
We thought we could develop a tip sheet for parents at the diabetes clinic or office, in order to help start the dialogue about sharing and transferring care to the growing teenager. Since all kids develop at their own rate, it will be up to the team & parents to determine when is the best time to begin these discussions. We suspect the tween years would be appropriate, from approximately 9-12 years of age. Below is our attempt at that tip sheet.
But first…not being parents of PWDs ourselves, we hoped to elicit some feedback from you!
• What is helpful for you in parenting your teen w/ T1DM?
• What is most difficult?
• What would you have wanted to talk about with your child’s team, before the onset of adolescence?
• How can your health care team help now that your child is a teen?
• Do you have any struggles you think are pretty universal to parenting a teen with diabetes?
• What would you change about this “tip sheet”?
• We will put this into some sort of jazzy brochure, but would it be better as a video on YouTube?
In that vein, we also want to ask teens about what they need from their parents, both in the past when they were first diagnosed, as well as real-time, now, and in the future? So we thought you could share this with your teen, too, and ask them to respond to us as well:
• How can your nurse practitioner (NP) work with your parent to best help you learn how to manage diabetes?
• What should your doctor or nurse practitioner know about you in order to help you take care of yourself?
• What’s confusing to you? What’s easy?
• What do you hate most/like most about diabetes management?
• Any cool new apps or technology out there we should know about?
ALL feedback will be greatly appreciated!
PPWD (Parents of People with Diabetes!) Tip Sheet
PPWDs! Adolescence is a time of rapid physical and emotional growth, risk-taking, and for your teen with T1DM, a period of increased vulnerability (Jaser, Yates, Dumser, & Whittemore, 20011). You and your child may be in the thick of these changes, or perhaps you’re just beginning to plan. In all cases, because of the risks associated with poor glucose control, it is essential to continue supervising your teen since most research shows that having better overall knowledge of his or her diabetes management ultimately helps your teen maintain better blood glucose control (Osborn, Berg, Hughes, Pham, & Wiebe, 2012).
Because you know your child better than anyone else, you are in the best position to plan how, how much and when the teen will be able to assume their own care. Managing any chronic illness is difficult and complicated, either as an adult or teen, but teens are experiencing the extra push and pull of normal development—immense physical, emotional, cognitive and social changes. All teens will typically want to explore alternative ways of managing their diabetes, and to take risks, including normal experimentation with tobacco, alcohol and sexual activity. They will make mistakes. Failures and successes should be expected. The vast majority of teens with diabetes navigate the challenges of adolescence quite successfully on their way toward independence.
Some of the difficulties associated with T1DM management in adolescence have to do with simple physical changes:
• Rapid physical growth may change insulin needs
• Erratic meal and unpredictable exercise patterns make appropriate insulin replacement complex and difficult, and may increase risks of hypoglycemia
• Endocrine changes during puberty may lead to greater insulin resistance
Some of the social, cultural and cognitive changes of adolescence may also impact your teen:
• The paramount importance of fitting in, and having friends and (many) social activities outside of the home and family
• The teen’s increasing need for privacy, independence and autonomy
• Academic pressures and the stress of work-force entry
• A developing, but incomplete ability to understand long-term perspectives and consequences. The adolescent brain continues to mature through the late teens and into the mid 20s. The teen needs nonjudgmental, loving help to understand and cope with the consequences of their actions.
All children with chronic illness, including diabetes, have special challenges:
• Living with a chronic disease may cause some teens to retreat from the exploration and experimentation that is a predictable part of normal development
• Your teen may deliberately take risks with their diabetes
• Your teen may:
o Try to maintain a higher blood glucose level to avoid hypoglycemia, which feels awful and disrupts their life, OR
o Try to avoid taking the time to test, calculate and administer insulin to minimize disruptions in their school and peer-group activities
• Teens may keep secrets or not disclose important information (such as high BG levels) if they know you will get mad and yell at them. We all remember: it’s just easier to lie! (Adapted from Court, Cameron, Berg-Kelly, & Swift, 2009 and Osborn, Berg, Hughes, Pham, & Wiebe, 2012).
Now, on to the nitty-gritty:
1. How old is your child (and more importantly, where is she in terms of her development)?
When your child is around 8-11 years old, you can start incorporating discussions of what your child will do on his own when he is older, emphasizing that taking care of diabetes will ALWAYS be a SHARED RESPONSIBILITY, in the same way that your family shares other important things in life (and even smaller things like cleaning the house!) By age 13, most teens can perform all DM regimen-related tasks. However, full transfer of responsibility shouldn’t happen until much, much later (perhaps once she moves out of the house!)
Your child should know how to correctly test blood glucose, timing & frequency of testing, and the basics of calculating carbohydrate content and determining insulin injection or bolus. She should be able to demonstrate proper technique in terms of drawing up the insulin and injecting it, using a pen, or how to give an insulin bolus, change sets, etc. He needs to demonstrate site rotation—either injections or infusion set. In addition, she needs to know and maintain the basics of a healthy diet, and how to manage blood glucose and insulin in response to exercise, stress and illness (Vesco, Anderson, Laffel, Dolan, Ingerski, & Hood, 2010).
Some children will be ready for transferring some responsibility at age 11, others at 15 or 16, so always trust your judgment about her level of maturity. Allowing your son to test his blood glucose and give himself insulin for a few days is a good way to check to see if he’s ready. Or maybe have her do this just at lunch. Either way, follow-up at night to see how she did!
2. Kids need to know that you won’t leave them alone to manage the problems and frustrations of DM management on their own. Growing up (even without a chronic disease) is hard enough!
3. They also need to know you understand the pressures they face in figuring out how to incorporate all aspects of diabetes management into their busy, stressful lives:
a. Where to test (In dirty school bathroom? In front of friends?)
b. Which friend(s) to tell to be a “safety buddy”
c. How to deal with pressures to drink or smoke
d. How to keep sane and healthy and normoglycemic during sleepovers, parties, and other activities with groups of friends?
e. The need to calculate insulin needs from what she truly eats: if it’s 8 chocolate chip cookies and 4 slices of pizza, then 8 chocolate chip cookies and 4 slices should be counted. A discussion of healthier food choices can be reserved for later!
f. How to manage days w/ illness, extra stress, periods, sports competitions & practices.
g. Does she know her signs of hypoglycemia and what to do about it? Does she consistently carry some form of sugar? Or glucagon, if prescribed, and know how to use these?
4. It’s a good idea to problem-solve these and other scenarios with your tween and early teen, and to consistently check-in as your child grows through her late teens. Make it a nightly routine to go over the monitor, graphs and logs. Talk about what went well, what didn’t, and problem-solve with him how he might have done it differently.
5. Kids also need to know that you’ll be there for them even when they mess up. It’s impossible to always contain your own worry, fear or anger, and not scold your teen for lying about a blood glucose result, but in general teens need non-judgmental help in getting back on track. As Korey Hood states, “start thinking about the number as simply that — a number, a piece of data, information to figure out what to do next. If you start to think about the number just as data, it will help to keep your emotions in check. Once that happens, the teen may be more willing to share numbers and even check more often (keep your fingers crossed on that one!)” See reference below
6. Your teen needs time and space just to be a teen, not just a young PWD…That means being a concerned and involved parent, but not overprotective. In your busy schedules, try to fit in other ways to be his parent that don’t involve the disease. Do things together that have nothing (much) to do with diabetes. Help your teen normalize diabetes into their life…it’s a part of who she is, but only a part! And remember to take some time for yourself away too, so you can take a breather from being a PPWD (parent of a PWD)!
Here’s a great video from a young woman, Sarah Vasquez, about her concerns…they’re not always about the ‘bigger’ things!
7. Get involved with the online community of parents and teens dealing with diabetes. Your growing PWD will already be constantly connected anyway, so get involved, too. Attend family diabetes camps and let your child go by herself, as she gets older.
8. Remember to take care of yourself! It’s hard, stressful work parenting a child with a chronic disease. Diabetes management is complicated. Many on-line resources are out there, including blogs and Twitter. Check in your area for face-to-face support groups, too! Talk to your partner, spouse, relatives, and friends. Exercise! Eat right! And remember to share your concerns and love with your teen, too.
9. And finally, ask your diabetes health provider for ways to personalize and individualize your teen’s care—maybe going to a pump early is a good idea, maybe not. Maybe personalized texts from the NP regarding last month’s glucose control, for example, (“Way to go, Eva!”) would be helpful. Your NP, physician and social worker can help if you and your developing teen run into problems and need help negotiating a little behavior change. Never hesitate to ask!
(Adapted from Allison Blass: http://www.diabetesmine.com/2010/06/some-down... Thank you!)
Here are some other on-line resources for parents:
Don’t Be Frightened: It’s Just a Teen with Type 1 Diabetes – guest post by Korey Hood
And some on-line support for kids:
Court, J. M., Cameron, F. J., Berg-Kelly, K. & Swift, P. G. F. (2009). Diabetes in adolescence. Pediatric Diabetes 2009, (suppl. 12), 185-194. In ISPAD Clinical Practice Consensus Guidelines 2009 Compendium
Jaser, S. S., Yates, H., Dumser, S., & Whittemore, R. (2011) Risky business: Risk behaviors in adolescents with Type 1 Diabetes. The Diabetes Educator, 37(6), 756-764.
Osborn, P., Berg, C. A., Hughes, A. E., Pham, P., & Wiebe, D. J. (2012). What mom and dad don’t know CAN hurt you: Adolescent disclosure to and secrecy from parents about Type 1 Diabetes. Journal of Pediatric Psychology, epub ahead of print. doi: 10.1093/jpepsy/jss102.
Vesco, A. T., Anderson, B. J., Laffel, L. M. B., Dolan, L. M., Ingerski, L. M., & Hood, K. M. (2010). Responsibility sharing between adolescents with Type 1 Diabetes and their caregivers: Importance of adolescent perceptions on diabetes management and control. Journal of Pediatric Psychology, 35(10), 1168-1177.
Thanks everyone for reading this long post! All comments welcome.
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