Building T1D Independence: How to Pass the Baton

T1D Independence: Passing the Baton

Building Independence in Diabetes Self-Care: What Does My Child Need to Know?

Michelle MacPhee
D-Mom, M.S. (Psychology)

We all know that eventually our T1D child needs to be able to complete diabetes self-care tasks for themselves. But how do we hand over that baton? Where do we start? We've gotten to this place where I have to nag them to do what they already know how to do... how do we break out of that? A good place to start is figuring out what they need to learn along the way, what they already have under their belt, and what they still need to learn.

If the over-arching goal of parenting is to work ourselves out of a job (and I believe it is), then we have many skills to teach our children/teens in the 18-some-odd years in which they are in our care. Diabetes-related tasks represent an additional group of skills that need to be passed on, so that when they are out on their own they are equipped to do for themselves all the things which we have routinely done for them. (Dare to dream!)

How Do I Pass Responsibility on to My Child/Teen?

Sometimes it seems there are a million steps to hand off to our kids so they can manage their own diabetes effectively; it’s common for parents to feel overwhelmed and unsure of where to start. That’s why we put together this Diabetes Self Care Tasks section: to outline a framework for “passing the baton” that is manageable while working toward meaningful independence in terms of diabetes care.

What is a “Task Analysis”?

A task analysis is an outline of the steps involved in a particular skill. It breaks down a large, sometimes overwhelmingly task (such as diabetes self-care) into smaller component tasks (such as blood glucose monitoring, delivering insulin, correcting blood glucose highs, counting carbohydrates, adjusting for exercise and treating blood glucose lows), each of which can again be broken down into a series of steps which can be taught individually, and then linked together for mastery of the larger skill as a whole.

Here’s an example of a task analysis for injecting insulin with an insulin pen. The outline acts as a checklist, to give you an idea of the skills your child or teen may need to learn in order to become independent.

1. If using Humulin N or NPH, mixes the cartridge or vial properly.
2. Holds pen upright and shoots 2 units into the air.
3. Dials correct insulin dose.
4. Chooses an injection site (good absorption, not overused).
5. Applies needle tip to injection site.
6. Injects the insulin.
7. Holds pen in place for 10 seconds.
8. Removes needle tip from injection site.
9. Caps the insulin pen after use.
10. Disposes of needle tip safely when needed.

How does this help me “pass the baton”?

For those of you who are wondering how you can get your young child involved in his own diabetes care, a task analysis (outline of steps to mastery) can provide ideas for smaller steps within the larger tasks which your child may be able to carry out. For example, he may not be able to check his own blood glucose, but perhaps he can put the strip in the monitor and read out the resulting number. Involvement, in whatever way your child can manage (both physically and emotionally), contributes to a sense of control and responsibility. This will benefit everyone in later years.

In the same way, if you’re playing catch up and find there are LOTS of diabetes care tasks to hand over to your teen in a short period of time, a task analysis can help you find a place to start. Begin by picking a few achievable tasks: perhaps your teenager is not ready to adjust his own insulin doses, but he could look for a pattern of highs at the same time every day.

How Do I Know What to Teach?

You can start by asking yourself:

1 Are there skills in these task lists that my child or teen already does on her own?

Mentally cross them off the long list in your head; breathe a sigh of relief that you don’t have EVERYTHING still to hand over; give you and your child or teen a pat on the back for what you’ve all already accomplished.
To determine if your child has “mastered” a certain skill (that is, she could and would “pull it off” by herself when you’re not around), consider not just what your child can do, but what she will do consistently. Without assistance, reminders or nagging.

For example, my 14-year old son can check his BG before he eats but without my reminder he often forgets this step. Even though he has the ability to do so, he doesn't consistently and independently check his BG before eating. So we're working on this.

2. Are there skills my child or teen can do as long as she has some assistance or supervision?

Ask yourself if among them there are skills he could and should be doing without assistance. Keep in mind where he’s at developmentally, emotionally, physically. Talk to your child/teen’s diabetes health care team for perspective.
Get input from your child/teen; see how he feels about being more independent, ask which skills he might like to take more responsibility for, involve him in making these decisions about his diabetes.
Identify a target skill to work on in the coming weeks, and consider ways to fade out the assistance or supervision you are currently providing.
Motivation is often the key to fading out supervision and nagging; set up some key motivations/rewards, and be prepared to restrict access to privileges when your teen CAN do the task, but doesn’t reliably do so.
Keep in mind that perfection is a frustrating goal – 80% follow-through may be “good enough” and is a more achievable goal.

3. Are there skills I still “own” completely?

That’s okay! Some things should be in an adult’s hands. Again, keep in mind what’s reasonable for your child or teen, given her age, abilities, current emotional resources, and the other demands she’s coping with.
Make a long term plan to hand these skills over by considering which skills are foundational skills (pre-requisites for other skills) and so will be taught sooner than other more advanced skills.
Talk to your child/teen’s diabetes health care team for perspective; chat with your child/teen to get their input.
Consider all of this within the context of your timeline: will your child/teen likely be living on her own within 4 months? 4 years? 14 years? Adjust your plan accordingly.

To get you started, we’ve created a few task analyses (outlines of steps) for common diabetes-related self-care skills:

What Specific Skills Do We Need to Work On?

Consider these common diabetes-related self-care skills that - sooner or later - will need to be handed over to your child completely.

Each linked heading brings you to a page that provides a checklist of skills. You can review these and think about whether your child/teen can – and will – independently do all of the tasks related to that skill. If you answer “no” to a certain step, that could become a teaching target to move your child towards independence.

Carbs and Exercise

Counting Carbs
Adjusting for Exercise

Checking, Treating & Managing Blood Glucose

The Physical Process
Treating Lows
Correcting Highs

Delivering and Adjusting Insulin

The Physical Process (syringe, insulin pen, or pump)
Determining the correct timing of insulin (when to deliver for optimal control)
Adjusting Insulin Dosages

Using an Insulin Pump: (if applicable)

Inserting Infusion Sets
Replacing Cartridges/Reservoirs
Responding to Insulin Pump Error Messages

This is not an exhaustive list. There may be other skills that you know your child or teen needs to learn. Ask yourself: what do I always have to remind him to do? Where does she still need my help? Then use the examples provided to move toward independence.

What If These Steps Are Too Big?

Some of the above diabetes self-care skills may be broken down into even smaller steps to meet your family’s needs.

For example, “Draw up correct amount of insulin” could be broken down into 5 (or more) smaller steps as follows:

Take cap off syringe.
Place needle into insulin vial.
Draw back plunger to fill syringe to desired level.
Tap out any air bubbles.
Refill syringe to desired dose level, if necessary.

If a step seems unmanageable for your child or teen, or if you have been trying to teach a given step without success, consider ways to break that skill down into smaller component steps, and then teach one of those sub-steps at a time.