Mental Health and Wellness: An Interview With Marisa Hilliard
As your children and teens gain more independence with their diabetes, building resilience is extremely important. How can they build resilience, what does the research show, and what should parents know?
Many people with diabetes are acutely aware of how overwhelming it can be to manage this condition. One way to combat this is to build up resilience. Resilience is just a response to adversity (in this case diabetes) that you and everyone else are more than capable of showing.
How is diabetes resilience defined?
Dr. Marisa Hilliard, a psychologist and associate professor of pediatrics at the Baylor College of Medicine and Texas Children’s Hospital, defines “resilience” as having the ability to respond to a hard life experience or situation by “using the resources available to you, getting the help you need, and maximizing what’s available to you to manage that challenge and achieve a positive outcome.”
With diabetes, these positive outcomes can be achieving their target A1C, maximizing time in-range, and averting diabetic ketoacidosis. They can also refer to behavioral outcomes such as practicing diabetes management behaviors and having a good quality of life. Instead of viewing resilience as a black-or-white phenomenon, you can be resilient by celebrating the parts of your life with diabetes that are working for you, instead of focusing on the areas in which you’re not yet where you’d like to be.
If you’re struggling in other parts of your life but your diabetes is going alright, you’re demonstrating diabetes resilience, Hilliard explained. On the flip side, if you’re having a hard time managing your diabetes but you’ve had some wins in your personal life, you are still showing diabetes resilience and can channel those strengths toward improving your diabetes outcomes.
Hilliard leads the Resilience and Diabetes (RAD) Behavioral Research Lab at the Baylor College of Medicine and Texas Children’s Hospital, which specializes in developing approaches to building resilience in youth and adolescents with type 1 diabetes. Her lab aims to understand the ways children and adolescents respond to the challenges of living with diabetes, by conducting intervention studies, surveys, and interviews.
Hilliard shared three studies that have shown promising early results. While these studies don’t yet have conclusive results, early feedback and results from participants point us toward programs and/or strategies that have the potential to build resilience and prevent diabetes distress in young adults.
1. Affirming diabetes management in healthcare settings
If you’re someone with diabetes, chances are your healthcare provider will discuss your blood glucose as soon as you step into their office for an appointment. The RAD lab wanted to explore what would happen if healthcare appointments started off on a more positive note. They instructed healthcare providers to start appointments with an affirmation of progress, such as pre-bolusing on time, having more conversations about diabetes, or even making a joke about diabetes with a close friend. These positive exchanges between the individual and provider took place with a parent in the room, modeling positive behavior for the parent to replicate at home.
According to Hilliard, participants responded enthusiastically; they mentioned feeling appreciated by their provider and less dread around diabetes care appointments. While there wasn’t a significant change in A1C, the team predicted that when used in combination with other strategies that target blood glucose management, these quick affirmations could be a powerful way to build resilience that can be measured.
2. Delivering words of encouragement at home
When caring for someone with diabetes, it’s often easier to focus on what more can be done to achieve the best possible health outcomes, as opposed to acknowledging and celebrating the hard work that goes into managing diabetes day to day.
As part of another intervention study, parents of children with diabetes downloaded an app which sent a notification to their phone every day prompting them with the question: “What did your child do right with their diabetes today?” Parents were given a list of 15 possible actions, with the option to write in their own observations.
The RAD team found that parents used the app for about three months and responded to upwards of 80% of the prompts. In addition, they logged in around 90 responses of their own about their child’s diabetes management – a few of which were notes of frustration, but the majority of which were positive recognition of acts that might have otherwise gone unacknowledged, such as their kid eating lunch with the new person at school with diabetes, or their child signing up for their local JDRF chapter.
Hillard said that people with diabetes make hundreds of decisions per day on average regarding their diabetes care; while it’s easy to focus on a few “wrong” decisions, there’s value in applauding the many great decisions being made as well. As Hilliard noted, “Don’t ignore the things that may be harmful or dangerous, but refocus your attention more on the good stuff.”
3. Peer support when transitioning from pediatric to adult care
For children, entering the world of adult care is daunting. You step away from the familiarity of a provider you’ve known for years and are confronted with the challenges of finding a new provider and navigating insurance, while likely balancing other big life transitions that come with entering early adulthood.
In this randomized-controlled study, Hilliard's team is testing the effect of introducing a peer mentorship program, where young adults with diabetes (aged 20 - 35) who are well versed in the world of adult care offer mentorship to younger adults (18 - 25) to help them avoid falling through the cracks.
“There’s a bias in the healthcare system that ‘providers know best,’” Hillard said. “Peer support can be equally, if not more, valuable or at least of complementary value to medical care. [Since] peer mentors are not giving medical advice, there’s value in what they can give you in all that time when you’re not at your doctor’s appointment.”
While the the first two intervention studies mentioned above did not show significant improvements in A1C (and the third study is still underway, so results are not available yet), the adults and children involved responded with enthusiasm about how it made them feel about their diabetes and how they responded to it. People with diabetes often receive negative comments, judgment, and criticism from so many directions, but don’t get celebrated enough for the things they are doing right.
Celebrating strengths, and what’s in your control, is at the heart of building resilience and can go a long way in influencing measurable outcomes like Time in Range and A1C, as well as quality of life and general diabetes management, Hilliard said.
How can I build resilience in my life?
Resilience is something you can achieve, and keep working to build. Here are some of Hilliard’s suggestions for ways you can build diabetes resilience every day:
Be realistic with yourself. Set positive goals for yourself that you feel you can achieve. Try and create goals that are related to your behaviors and aren’t rooted in achieving a certain metric of diabetes success. An improvement in your Time in Range or A1C will feel the best when you haven’t burnt yourself out trying to reach that goal.
Lean into self-care and celebrate your wins. It can feel like there’s always room for improvement, but celebrating your successes along the way can motivate you to keep going. Find people in your life who will be your cheerleaders and celebrate your wins along the way -these people can be anyone from your family, your friends, or even someone you met in a diabetes support group.
Get support when you need it. Seeking support is already a sign of diabetes resilience. Living with diabetes comes with a unique set of challenges, so it can be difficult to find a provider who can help you address them together. Find a resource through the ADA’s list of mental health providers, ask your diabetes care center for help, or ask your healthcare provider to refer you to trusted resources.
Remember that resilience is dynamic. Resilience changes across circumstances. The way you respond to obstacles in your diabetes journey will change, just as you as an individual will change through different phases in your life.