Living with any kind of chronic health condition is mentally taxing. You may have noticed that, thankfully, our healthcare system is paying increasing attention to the mental and psychosocial burdens these days — and the concept of resilience has become core.
But we bet you didn’t know that there’s a lab dedicated entirely to building up resiliency in people with diabetes (PWDs).
Yep, it’s called the Resilience and Diabetes (RAD) Behavioral Research Lab at Baylor College of Medicine in Houston, Texas, and it’s spearheaded by Marisa Hilliard, PhD, an associate professor of pediatrics and diabetes psychologist. Her work focuses on two major areas: psychological support for people with serious and chronic conditions, and positive psychology.
There are a number of “resilience labs” popping up around the country, for example at the University of Southern California (USC), at the University of California San Diego (UCSD), and at Wayne State University in Michigan.
But Hillard’s is the first to home in on life with diabetes.
“I thought, ‘Gosh, positive psychology seems to fit really well with all of these things that I’m interested in with kids with diabetes.’ So, I tried to bring that positive psychology perspective to understanding the challenges of living with a complex chronic problem like diabetes,” Hilliard told DiabetesMine.
Indeed, insulin-dependent diabetes is one of the few chronic conditions in which the patient (or their family) is responsible for an onslaught of daily adjustments that never seems to end. One Stanford University study found that people with type 1 diabetes (T1D) need to make at least 180 decisions a day related to blood sugar management. Inevitably, some of those decisions don’t pan out as planned, and that leaves plenty of room for frustration and self-doubt.
How can you not go a little crazy trying to manage all that alongside all the regular challenges that life serves us?
Diabetes blogger and T1D advocate Scott Johnson says that too often people with diabetes kick themselves when blood sugar swings happen, and over inevitable slip-ups in navigating this constant state of medical improvisation.
“I think we are too critical of ourselves, and don’t give ourselves enough credit,” Johnson said. “We may feel like we’re being ground down, but we’re actually showing much more resilience than we think.”
Over the years, diabetes-focused healthcare providers are increasingly understanding the importance of resilience. As average A1C results have risen despite advances in insulin and diabetes technology, many healthcare providers are realizing the value of supporting PWDs with the mental aspects of the condition.
Often, this discussion focuses on how best to support PWDs who may be facing mental health challenges of burnout, depression, or disordered eating. Over the years, however, a committed group of psychologists and healthcare professionals have instead advocated for helping PWDs recognize and draw on their resiliency. They contend that all people have important strengths to help them manage a chronic condition, and to keep them afloat when things go wrong. What’s important, they say, is to support those strengths.
Hilliard, a clinical pediatric psychologist and behavioral scientist, leads a core multidisciplinary research team that includes a psychology postdoctoral fellow, and five research coordinators. The coordinators include post-bachelors staff, graduate students in psychology, and a licensed clinical social worker. The group works closely with behavioral scientists, endocrinologists, and statisticians at Texas Children’s Hospital, Baylor College of Medicine, and other institutions.
Together, this team tests out clinical interventions intended to encourage and foster resilience in pediatric patients. Their research projects include a range of study methods — surveys, qualitative interviews, and behavioral intervention techniques — to see what works, and what doesn’t. It’s all in the quest to relieve diabetes distress and build up resiliency among children and teens with T1D, and the families who support them.
Currently, the lab is working on the following projects:
DiaBetter Together is testing a strengths-based peer mentor intervention for young adults with T1D as they are transitioning between pediatric and adult healthcare settings.
PRISM-Diabetes is a multi-site trial, led by Dr. Joyce Yi-Frazier at Seattle Children’s, testing a resilience-promotion program for teens with T1D who are experiencing diabetes distress.
The lab also recently completed the First STEPS study, a multi-site trial led by Dr. Randi Streisand at Children’s National Hospital, testing a stepped-care intervention for parents of young children newly diagnosed with T1D.
Typically, the lab recruits study participants through the diabetes clinics at Texas Children’s Hospital, the largest children’s hospital system in the United States, but sometimes the lab has broader recruitment and can offer opportunities to participate for people who are not seen at Texas Children’s. In those cases, they often share recruitment opportunities through local or national diabetes family groups, social media, or other word of mouth methods.
DiabetesMine asked Hilliard about how resilience fits into diabetes care, and specifically how her lab helps healthcare providers encourage resilience in PWDs and their families.
First off, how do you define resilience when it comes to living with diabetes?
There’s a lot of debate over whether resilience is a trait, a process, or an outcome. Where I land on it is that to be resilient means that you are doing well in some area in your life, and managing the challenges of living with diabetes.
That can mean you are doing well with your glycemic outcomes. That can mean you are doing well by avoiding hospitalizations. That can mean you have a good quality of life. It can be that you’re doing all the things outside of diabetes — learning to drive a car, managing friends and school — and making diabetes work along the way.
To me, resilience is about… living well with this condition and all of the challenges that it brings.
So, resilience is not about mastering everything in your life?
A lot of people would agree that you don’t have to be resilient in every single area of your life, and it would be hard to find anyone who is doing well in everything. It’s about doing well in some areas, and figuring out the challenges in others.
For example, you might be doing really well socially and in school, and doing really well with checking your blood sugars, but, gosh, those A1Cs are still high because you’re 14 and your hormones are going nuts. And that’s OK.
That’s why I don’t think of resilience as a personal trait, a thing that you have or don’t have. I think of it as how you’re doing in particular areas of your life.
Can you give an example of how you guide healthcare providers to foster resilience in patients with diabetes?
We had teens and parents answer some questions about diabetes management and diabetes strengths, and then we gave a summary of the answers to those questions to the teen, the parent, and the provider. We taught the provider to start the diabetes care visit with a discussion of those strengths.
The conversation often went like this: “Let’s talk about your strengths. Wow, last time you were here you said you never wanted to tell anyone about your diabetes, and now you said that you almost always talk to your friends about diabetes. That is amazing, you’ve made so much growth! How have you done it? Let’s talk about that for a few minutes.”
Starting the conversation with some recognition of what the person with diabetes is doing well can really set the tone for the whole conversation. So, my advice is to remember that the people you’re talking to have an emotional reaction to the words you’re saying and the information you’re giving them. Remind them what they’re doing well, and keep focusing on “How do we get you where you want to go?” as opposed to “What did you do wrong?”
How can people with diabetes build up resilience?
First, think about what it is that you’re good at, and what it is that you like doing. These don’t have to be specific to diabetes. For example, it could be someone who likes spending time with friends, or a child who is very artistic.
For the person who is connected with their friends, how can you use your social skills and your social interests to help you with diabetes management? Maybe you find a friend who’s gonna be your diabetes buddy, and check in with you. For a child who is artistic, maybe they make a colorful chart with cool pictures of all their daily tasks, and they get to decorate it and make it a fun activity to track their daily diabetes management tasks.
It’s about taking a thing they like, and applying it to a mundane, boring, or frustrating part of living with diabetes.
What would you say to parents of a newly diagnosed child who might be skeptical about trying to focus on resilience when they’re still trying to get the hang of blood sugar management?
The first thing I would say is, “You don’t have to.” Every family can choose what’s most important to them. Maybe right now for a family, what’s most important to them and their biggest priority is figuring out hypoglycemia, or figuring out how to get their kid on the insulin pump that they want. And that’s fine.
But I think it’s important for people to at least be aware of these issues, because life with diabetes is not just glycemic control and glycemic outcomes. It’s all the parts of everyday life that you might not see in glucose tracking.
In an essay Johnson recently wrote about Hilliard’s work, he noted how essential resilience is to PWDs because it helps people like him navigate the many small and large pitfalls of blood sugar management.
He also says that people with diabetes might have a head start on building resilience.
“There’s no way to build that resilience muscle without going through challenging situations. Just by the simple experience of having the doctor say ‘You have diabetes,’ is in and of itself is challenging enough to qualify,” Johnson said in a later interview.
Jill Weissberg-Benchell, a diabetes care and education specialist (DCES) and professor of psychiatry and behavioral medicine at the Northwestern University Feinberg School of Medicine, has been among those advocating for focusing on the strengths PWDs bring to their lives, rather than where they may be struggling.
She praises Hilliard’s research for helping to define and quantify the value of building up resilience in PWDs.
“You don’t want to look at anybody as a set of symptoms, as a set of problems,” she said. “That’s just overwhelming, it’s exhausting, and it doesn’t take into account a person’s entire life.”
Weissberg-Benchell has led round tables on resilience and T1D with JDRF, and is currently working with the organization to advance a pilot study of the value of psychological support in pediatric patients and their families after the first year of diagnosis.
She said that an emphasis on positive psychological support has gained many backers in diabetes care, especially as long-promised diabetes technology has failed to bring down average A1C results for people with T1D.
The technology may be wonderful, but if there is something getting in the way of the end user utilizing it to its fullest, then that underlines the need, once again, for psychological support, she said.
“A colleague of mine… says the most expensive device is the one that you buy [at whatever price] and it ends up sitting in the drawer.”
In a small poll about resilience in an online support group for T1D, most of the respondents reported that their healthcare providers tried to focus on their strengths rather than on what’s going wrong during visits. However, beyond this unscientific sampling, too many diabetes-centered social media threads are filled with stories of healthcare providers chastising and even belittling patients. Clearly, there is more work that needs to be done to bring resilience-focused support to the forefront of diabetes care.
One of the stumbling blocks may be insurance coverage, says Hilliard. Currently, insurance payers are reluctant to pay for integrated mental healthcare. When insurance does pay for such services, it usually must come with a diagnosis of what needs fixing, rather than what needs strengthening.
Increased acceptance of the need for psychological support for PWDs is also creating a different problem — a need for more people trained to provide such specialized care.
Hilliard recalls that she and others had to fight to have a dedicated psychologist for mental healthcare for children with diabetes at Texas Children’s Hospital. When that psychologist finally came on board, they were quickly overwhelmed with work, and there is now a long wait list for care.
“There are pipeline issues — not enough people are trained — and then there are funding and access issues as well,” she said.
The major diabetes organizations are working to strengthen the pipeline by creating a directory to help people find psychologists and psychiatrists who are well versed in diabetes issues. They are also offering increased resources to provide diabetes training to people in the mental healthcare fields.
Hopefully, researchers like Hilliard and Weissberg-Benchell can continue to provide quantifiable data that can convince insurers of the value of resilience-based mental health support for PWDs, just as past researchers have done with medtech tools like continuous glucose monitors.