Dr. Heather Stuckey is a qualitative research who focuses on improving the education, self-management support and psychological distress of people with diabetes and other chronic diseases. Using medical humanities-based models and problem-solving techniques, she works with qualitative methods (narrative, video, arts-based inquiry, observations, interviews, focus groups) to determine how adults make meaning of their illness and how the medical community can respond to support patients and their families. She has been the leader in developing interventions that are built to help people problem-solve by looking at strategies that have worked in real-life scenarios. Using her adult education background and creativity, she takes a systems approach in not only improving knowledge, but providing social and emotional support as part of her interventions. She has also co-edited a book on transformation and the arts, and has written several NIH grants to become an expert in mixed methods research applied to behavioral science.
Dr. Stuckey serves on doctoral committees, assists multiple students at Penn State Milton S. Hershey Medical Center with their Medical Student Research projects, and facilities problem-based learning courses. She completed a post-doctoral appointment at Penn State Harrisburg in the Office of Research Affairs and at the Hershey Medical Center in Endocrinology. She was a fellow at the Office of Behavioral Social Sciences Research Randomized Clinical Trials in 2010.
I love Heather because she is so passionate about compassionate care and authentic about her own experience with diabetes. When you talk with Heather, it’s clear that she’s listening so intently; she hears what you say and what you don’t say and that is a gift. I deeply appreciate her honesty, introspection, and inquiry and I love that she delivers all that with a broadly joyful smile.
Q: You’ve earned a PhD as a single mom. How did you do it? How did you maintain balance between the demands in your life?
HS: I first had to set priorities and ask myself what was really important. I wouldn’t compromise my son and my health. So each day, I’d get my son breakfast and off to school then work out for an hour – a walk, a class, something to get moving. It was important for my mind, body and my spirit. Exercise allowed me to process what I was learning – it was something I wasn’t going to compromise. If someone asked to go to lunch, I’d see if they wanted to walk with me. It’s still my pattern.
Exercise has helped me maintain my health to where it is to date. Now I use fitness apps at home, yoga, walking. I had a personal trainer for a while to learn some new things for strength-building. I’ll try almost anything. I like to hike, bike, and be outside. Diabetes hasn’t restricted me and my gut feeling is because I keep exercising. I keep on schedule with doctor appointments, but it seems like the best prescription is to keep moving.
Q: Can you tell me more about your qualitative research? What’s the coolest part about your work with Penn State? How do you impact the world?
HS: I do international work with the psychosocial aspects of diabetes. I got into this because of my interest in the stories of people with diabetes. I felt like people’s stories were missing from medicine and that people weren’t being given the time or space to tell their perspectives. That’s when I became interested in qualitative research.
I get requests to be a qualitative researcher worldwide – India, Thailand. I impact the world by conducting research in psychosocial needs of people with diabetes and trying to discover what are barriers for people to manage their diabetes. I’m working on a NIH grant about how people successfully control their diabetes. (45:59). When we study the habits of people who are successful then we can create a tool that we can use to measure how well people are living with diabetes. Some of those characteristics include patients having a thread of hope about their disease. My research clearly demonstrates that patients who have hope and gratitude help patients cope with their disease. That means, they have also accepted having diabetes. If we can help patients find hope, in addition to the treatment, it’s a really cool thing. I also study how people were diagnosed and how they were told about having the disease. The diagnosis is a turning point for people and I’m looking at how we can make the diagnoses more patient-centered and more compassionate, so we can give them a little bit of hope. I’m trying to impact practice in that way.
Qualitative research has taken me all over the place. I’ve found it to be so interesting and you can get closer to the truth, since people lie about their numbers anyway.
Q: So much of your research is centered around diabetes. What should people know about living with this disease or supporting those who have it?
HS: I’ll start with my diagnosis with diabetes when I was 12 years old. My mother knew the symptoms and caught it first. I was at a gymnastics event for Olympians where you watch gymnasts perform, and I was so thirsty, drinking out of the fountains, the sink. My mom took me to the doctor the next day and they said my blood sugar was off the scale, which means it was over 600. At that time, you were admitted to the hospital for observation. My parents didn’t visit and I was frightened of being in the hospital. I didn’t know what it meant. All I knew was that I couldn’t have chocolate milk any more.
Diabetes management at that time was diet based. I did a good job for a couple of months. But then I went the opposite direction – Raisin Bran for breakfast, candy bars, for lunch chocolate milk, then I’d have more candy, dinner with my family, maybe more chocolate. My blood sugar was so out of control. At that point there wasn’t a measure of blood sugar over time (A1C measures it now – it’s a serum blood that allows you to see what your blood glucose is) so basically I could eat whatever I wanted. Right before the doctor’s appointment, I would manage my diet and take a ton of insulin. Then I’d go right back to my crazy diet.
While I was a young person with diabetes a few years after diagnosis, the A1C was developed and tested. I went for my appointment and the doctor said the A1C couldn’t be read. I pretended the test was mistaken. So the doctor asked to see my glucose log at my next appointment. The day before the appointment, I made up a glucose log and I gave it to him. Of course my numbers didn’t reflect the A1C test results. I pretended not to understand. My doctors didn’t know what to do with me. It was like a game. Each appointment, I just felt like I was doing an ok job. I didn’t want to disappoint the doctors, so I kept doing what I wanted to do, literally drinking liters of soda each day.
It occurred to me that no one had every really asked me how I felt about having diabetes. They were only concerned about the numbers and what the numbers meant, but they weren’t worried about my story or me. At that point, I was taking graduate classes about systems thinking and learning how to change the system. So I started to pour my energy into changing the medical system.
But I was still not controlling my own blood glucose levels. I was getting a little better and the A1Cs were closer to acceptable. My work fueled my passion: people were being seen as numbers, instead of real people with a story. I talked with others who had Type 1 diabetes. Their stories were similar to mine; I found that they made up their numbers. When doctors focus on numbers instead of patients, it’s easy for patients to lie.
Finding this common theme took me down this path of medical humanities research. I started to write about my own story of my path with diabetes. I kept journaling, because I love to write and read. There was this one piece that I wrote specifically – called Dry Bones – I’m no longer a religious person, but I had heard the phrase “valley of dry bones” in my childhood. The story started, “Nobody’s asked me how I feel about diabetes, so I’m going to tell them.” Diabetes was suffocating. It’s something that never goes away. It felt like I was going through a dark tunnel with bones around me. I saw people dying. I saw people having complications from it. I didn’t have any hope. From day one of my diagnosis, I was told you have to control your blood sugar or you’ll lose your legs or go blind. All the language was based in fear. So I started to write about it and I got depressed. It felt like a wave of overwhelming sadness.
“Can these bones live?” The response is that god speaks to the bones and brings life to them. And I found my hope – I could breathe life into these bones. To make these bones live, I decided to use creative expression. The arts weren’t used in the medical system. So as part of my doctoral dissertation, I asked people how they felt about having diabetes. They all said, “ no one’s ever asked us that before!” The patients had answers, but they weren’t really deep answers, so I wanted to use creative expression to get people to show how they feel about living with diabetes. For the research, I did a meditation with diabetes patients, asking them to think about their body. Then, I asked people to draw a simple shape, characterize it. Then we wrote a simple sentence. “Diabetes is like a ________.” Some people had a huge red X (keep diabetes away), some had a circle with dots (problems with vision). The next session, we took pictures of those shapes or anything that looks that looks like that shape that you created. The women with the circle with dots – it reminder her of a clock – diabetes kept her on a regimented schedule, she felt like a robot. I really listened to their stories and found out WHY they felt that way. Working with others gave me insight into why I was having trouble managing my diabetes, so I’ve been on that journey and I’m starting to understand the process of managing the psychosocial aspects of diabetes.
If you know someone with diabetes and want to support them, just ask what they need. Some people don’t want support. Some people need someone to remind them to check their blood sugar or take medication. Some people just need someone to listen. If you just ask people, “what can I do to support you?” they will usually let you know. It’s not helpful to tell people what they should or shouldn’t eat, unless they ask you to do that.
Q: How does your expertise in adult education shape the way you approach relationships?
HS: Adult education is one of my roles at work and I have a few core values. One is that we are co-learners; we learn from each other and that everyone’s expertise is different. Even though I’m an expert in qualitative research, I value what I can learn from others. When I teach, I teach from the principle that we are learning together. I try to teach the big picture and then create activities that enhance or expand on these ideas.
For me, adult education is about really paying attention to the student. My adult education background has helped me to understand how to educate people where they are and that sometimes it’s not about education at all, it’s about getting more experience. Sometimes education is about moving out of your head and into your heart. In my current work, this applies to the patient, and to the health care professional who is caring for her.
Q: What would be your advice to a younger version of yourself?
HS: I would say, “Question authority. “ I was so worried about following the rules and looking right that I wasn’t going with my heart and having a voice. “That’s what I’d say to a younger version of myself – Speak up!”
Q: What question did I miss? What else should I know about you?
HS: I’ve had a difficult time with accepting religion as an establishment. I had a few childhood experiences with evangelical “Christians” that have really made it difficult to love the church because it has damaged people by twisting verses and determining what is right and wrong. Please understand that this is only my opinion, but it has built anger inside that I believe comes from the abuse of power. This power differential can also be found in medicine, which is why I want to challenge the system, sometimes by “speaking softly and carrying a big stick.”
Anger is why I still find it difficult to managing my blood sugar. I keep the anger inside and take it out on my own body. Over the years, I’ve begun to use the skills of creative expression and writing that I use with patients, to help my own body, mind and spirit. Talking to someone who understands what it’s like to have diabetes and isn’t perfect is also helpful. By controlling my blood sugars in a negative direction, it was just a way for me to be angry without looking non-compliant or out of line. I could be angry at myself and my body without visible external consequences. I am trying to help other people who feel angry at life, or depressed about having diabetes, by showing my understanding, even though my situation may be different than theirs. It is time to let go of the anger, while still keeping the story alive.