David Schwartz, PhD, is an expert in adherence to medical treatments in adolescents with chronic illnesses. He shares insights on how providers can facilitate shared responsibility for diabetes care while minimizing conflict between adolescents and their parents/guardians.
Q: How might adherence to diabetes self-management behaviors differ between adolescents with diabetes and adults with diabetes?
A: Two big differences come into play. One has to do with development, and the other has to do with the issue of family teamwork. When we think about adults managing diabetes, they’re typically autonomous decision-makers; they’re in charge of being organized and taking care of everything that needs to be taken care of. It’s different for adolescents. When we look at the youngest children, the parents/guardians are doing all of the diabetes self-management tasks. As these children get older, they often take on increasing responsibility for managing their diabetes. The challenge for the parents/guardians, as well as the provider, is to determine, how do you know how much responsibility to give the adolescent? When do you give increasing amounts of responsibility?
Q: How can providers guide families on matters related to shared responsibility for adolescents with diabetes?
A: It’s about understanding the level and quality of parent/guardian involvement. When parents/guardians are involved, adolescents are usually better with their adherence to diabetes self-management behaviors. But more important than the amount of parent/guardian involvement is the quality of that involvement. Are parents/guardians punishing their adolescent for having high blood sugars? Are parents/guardians being judgmental or making negative comments, such as “You’re not doing what you need to do.” “You’re messing up.” This is counterproductive and leads to quite a bit of conflict.
This is something that families typically face in middle childhood and adolescence. Research has shown that diabetes is managed best by shared responsibility between parents and adolescents with diabetes. This requires teamwork. Probably the most common mistakes we see are situations in which adolescents are given independence for managing their diabetes too soon. They get in over their heads; they get overwhelmed. That’s usually when the parents/caregivers will try to step back in, but that’s almost too late, and this can create conflict.
In terms of guiding the family, the way to determine the level of responsibility that might be appropriate for the patient is to think developmentally. Development is not a monolithic thing. Parents will often say, “She’s 16 and she knows exactly what she has to do.” But cognitive development is different from emotional development and the development of executive skills or executive functioning. In other words, adolescents may know what to do and why they need to do it, but they don’t necessarily do what they need to do-or they don’t do it well, or they don’t do it consistently. So that’s part of thinking developmentally and assessing where they are developmentally. They may be cognitively ready in the sense that they can “write the book” on how to manage diabetes, but they may not be emotionally ready to take on that responsibility, or they might not yet have the executive skills to plan, initiate, organize, and monitor self-care behaviors effectively.
Q: How is the term “self-management” reevaluated for the adolescent population?
A: I’ve always struggled with this term because I don’t feel it captures the collaborative aspect of diabetes management that I feel is so important for diabetes care, particularly in pediatrics. However, the focus on self-management does align with the focus on independence.
I’ve tried to make a distinction between independence and autonomy, which I think is very helpful clinically to consider. When I talk with families about this, I’ll talk about independence as being on your own; doing everything by yourself-versus autonomy, which is making your own decisions, including the decision to ask for help if you need it.
Parents/guardians will push for their adolescent to be independent, to manage diabetes on his or her own, in part because that’s the culture we live in-parents/guardians don’t want their adolescent to be too dependent on them. The other thing I hear a lot, even from young, healthy parents/guardians is, “I’m not going to be here forever, so she needs to do this on her own.” There’s a lot for parents/guardians to worry about.
I also see this with providers, particularly with adolescent patients who have poor glycemic control and may experience more family disruption or things going on that are obviously contributing to the poor glycemic control. The provider will say, “I don’t feel comfortable that this parent/guardian can step in and do what needs to be done, so I’m going to push the patient to be as independent as possible.” The problem with this approach is that it just doesn’t work very well. Few of us really want to be doing everything on our own, and we typically do things better when we’re working with somebody else.
So, that’s where the idea of autonomy comes in. Adolescents are more likely than adults to get in over their heads by not asking for help when they need it. If you can distinguish autonomy from independence, you can still foster adult responsibility in adolescents without “kicking them out of the house,” so to speak. It’s about helping the adolescent take the reins of their life without feeling like “I’m totally on my own now, and I don’t have the support that I’ll need.”
Q: What role does family-centered care have in managing an adolescent’s chronic illness?
A: I feel very strongly about family-centered care. Two of the most robust findings from the research literature are that adolescents who run into the most trouble with illness management are those who either prematurely have too much responsibility and are not supported enough, or those whose families are struggling to work together because they can’t resolve conflict well. Often, it’s the same families who have both things, or they oscillate between the two.
The two crucial pieces for family-centered care are: (1) having an appropriate level of parent/guardian involvement, and (2) having involvement that is perceived by the adolescent as supportive, and not judgmental or punitive. I’ll often talk with families about the idea of collaborative management. It gives parents/guardians the opportunity to teach their adolescent how to do all of this: how to problem solve effectively, how to stay organized, how to fit diabetes into their life. Often they’ll say, “She should be able to do this on her own and should be able to do this independently.” My response is, that’s absolutely the goal. That’s what we want to work toward, but how do we get there? We have an opportunity now for you to teach your adolescent how to do what he or she needs to do to manage diabetes. We often don’t do a good job of teaching our adolescents how to manage their lives in general, let alone throwing something as complicated as diabetes into the mix.
The other side of this is that by focusing on collaborative management, particularly with adolescents, it gives them some experience in how to work with a health care provider. A lot of times when adolescents hit the age of 18 and now they’re “adults,” we just expect that they can do this. But maybe they’ve never had to schedule an appointment before or never really talked with their provider independently. By focusing on this family-centered care and collaborative management, it gives adolescents the experience-with their parents/guardians still involved-in working with the health care provider, making appointments, and doing all of those sorts of things without just being tossed into it and saying, “Here you go, you’re all on your own.”
Q: How do adherence and self-management evolve as the adolescent develops?
A: The idea here comes back to collaborative management and working together with the adolescent where he or she is developmentally, and going step by step. I think the other important aspect to this is recognizing that if you give an adolescent more independence for a diabetes-related task, parents/guardians should still continue to monitor it over time, even if it’s from a distance.
Parents/guardians should also recognize that the adolescent may try, and it may not go so well. If this happens, the adults should not turn this into the adolescent’s failure: “You didn’t do a good job with this.” Instead, they should say “We tried that, but maybe you weren’t quite ready yet. Let’s figure out how to do this in a way that’s going to be more helpful.” Also, at the start, when you’re giving them more responsibility, say something like, “You want to give yourself your own injections, and that’s great. Let’s try it for a week. Let’s see how it goes. That may be kind of hard for you, but if you want to give that a go, great.” You give youth the responsibilities they believe they’re ready for, provide support you both agree upon, monitor and assess how they do, and make changes as needed. In this way, parents/guardians can teach their children how to problem-solve and manage their illness effectively.
Thank you, Dr. Schwartz, for sharing your expertise with us.
Tell us about techniques that you have used to foster adult responsibility in an adolescent with diabetes – the good, the bad, and the ugly.
About David Schwartz, PhD
David Schwartz, PhD, is Associate Professor of Pediatrics at Baylor College of Medicine and the Director of the Neuropsychology Program at Texas Children’s Hospital. He received his PhD in clinical psychology from the University of Delaware, and completed a two-year post-doctoral fellowship in pediatric neuropsychology at Texas Children’s Hospital/Baylor College of Medicine. He is board-certified in clinical health psychology and a member of the Academy of Distinguished Educators at Baylor College of Medicine. He has a long-standing interest in the psychological and neuropsychological aspects of diabetes in youth.