How to balance shared decision-making with the family.
Dr. Wysocki has extensive behavioral science research experience in pediatric diabetes and shares his tips for navigating the triad of the doctor, the teen, and the parent.
Q: First things first, what are the dynamics of shared-decision making that you face in providing care to adolescents with diabetes?
A: In pediatrics, especially with adolescents, it's very important to recognize that decision-making tends to be triadic—involving the parent, health care provider, and adolescent. This triadic relationship is a dynamic that can get complicated if there are differences of opinion, for example, between the parent and the adolescent. A good shared decision-making process in pediatrics should reveal those differences and deal with them.
Q: Parents and their teens may not always see eye-to-eye when making treatment decisions. How do you manage this dynamic?
A: When working with adolescents in a shared decision-making intervention, it's very important that you give both the parent and their child the opportunity to voice their needs, preferences, and apprehensions about the decision that they are facing. You also need to make sure to communicate those decisions in a constructive way. My starting point is to work with the parents first and try to engage them in the idea that they need to hear their child's true perspectives—their values, their preferences, their anxieties about the device they're considering. If we can get that buy-in, I try to give them practical ideas about how they can communicate and how they can make it very clear. For example, "I really want to hear your opinion on this." This may be different from other decisions that are made with or for adolescents, like the school they will attend or when they will start dating. This really requires input and clear engagement from both the parent and adolescent for it to be successful.
Q: Why does it mean to say that adolescents have "veto power" – whether expressed or not?
A: The adolescent is the person who is actually using the insulin pump or the continuous glucose monitor (CGM), and they need to make the decisions such as: Should I give a bolus of insulin? Should I reduce my basal rate? Should I pay attention to this alarm on the CGM? Or should I let it go? All of these decisions are where the "rubber meets the road" in terms of benefits from these devices. If the adolescent has not bought in 100 percent to the idea that they have tools they can use to meet their own goals and priorities, then they are not going to be enthusiastic users of the tools available to help them manage their diabetes. They all require a lot of work from the adolescent, and if the adolescent is not truly committed to follow through, then yes, they have veto power over whether it becomes a truly integral part of their care.
Q: What are some tips for working with parents to improve the way they communicate with their child to find common ground in the decision-making process?
A: I like to encourage parents to use open-ended questions as opposed to closed-ended questions when they're discussing treatment and care with their child. An example of a closed-ended question is, "You'd like to be on the insulin pump, wouldn't you?" This is closed-ended because the answer is either a "yes" or "no." It's not a good communication approach because it conveys the parent's preference both by the tone of voice and the way the question was asked. An open-ended question would be one like "Could you tell me the pluses and minuses of using an insulin pump for you?" Or "What are some things you'd like to know about the insulin pump that you don't know now? How can I help you learn those things?" Those are questions that invite more output from the adolescent. We want to try to encourage as much output as possible—even if it's output the parents don't agree with.
Q: What are some suggestions for working with adolescents who may be reluctant to share their preferences with you or their parents?
A: Having time with the adolescent, without the parent in the room, and asking them questions again can oftentimes result in more honest feedback. Many times I find that an adolescent will be quite willing to be more articulate and more reflective when they are away from mom and dad. I often hear statements to the effect of, "Mom and Dad are pushing me to be on the pump, and I don't want to do it," or "Mom thinks the CGM is the best thing in the world; I don't." This provides an opportunity to help the adolescent rehearse ways in which they can express their feelings and preferences to their parents in a way that is polite, direct, and gets them where they want to be.
Q: What's your advice on trying to navigate a tense triadic relationship?
A: In dealing with some of the more tense triads, I try to make it very clear from the beginning that we are all in this discussion for the same reason: We want life with diabetes for this youngster to be as smooth, easy, and trouble-free as it could possibly be. It's helpful to try and look for middle ground first. What goals do we share? We might differ somewhat about the right path to take to get there, but establishing areas of agreement is very important.
Q: How do you balance shared decision-making with limited time for the patient visit?
A: This requires a fairly in-depth conversation with a health care provider. It does not necessarily have to be a physician who has this conversation with the family. In fact, many physicians delegate this conversation to their diabetes educators. But I would argue that time invested in a good healthy shared decision-making collaboration can easily pay for itself in time saved for patients who underuse treatment choices they didn't really prefer or didn't really want. And that's true with adolescents, where you see a higher proportion of adolescents than adults who quit using the insulin pump, who miss bolus doses, who run out of insulin – all signs of someone who is not really invested.
Thank you Dr. Wysocki for sharing your expertise in adolescent diabetes care with us.
What approaches have worked for you, as a health care provider, to balance the relationship between teens and their parents?