dialog with the devil - florida state university...

People Living with And Inspired by Diabetes

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THE IMPORTANCE OFCOMMUNICATION

DIALOG WITHTHE DEVIL

TWO SIDES TO THESAME STORY

TALKING ABOUTTHE HIGHSTHE LOWS

RESEARCHARTICLES

Vol. 1 | No. 1 | Spring 2015 www.ThePlaidJournal.com

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CALLFORENTRIESResearch. Case Studies. Perspectives.

JOIN THECONVERSATION

1 Vol. 1 | No. 1 | Spring 2015 www.ThePlaidJournal.com

EDITOR IN CHIEFMartin Wood, MSLIS, AHIPFlorida State University College of Medicine

MANAGING EDITORRoxann Mouratidis, MSLIS, AHIPFlorida State University College of Medicine

COMMUNICATIONS EDITORShenifa Taite, EdDFlorida State University College of Medicine

DESIGN EDITORMark BauerFlorida State University College of Medicine

ASSOCIATE EDITORSSusan Epstein, MSLS, AHIPFlorida State University College of Medicine

Robyn Rosasco, MSLIS, AHIPFlorida State University College of Medicine

Tana Jean Welch, PhDFlorida State University College of Medicine

COLLEGE OF MEDICINE

ISSN: 2374-4669

EDITORIAL BOARDLarry Deeb, MDTallahassee Memorial Hospital; University of Florida; Florida State University

Kimberly Driscoll, PhDFlorida State University College of Medicine

Gail Galasko, PhDFlorida State University College of Medicine

Korey Hood, PhDStanford University

Nicole Johnson, DrPH, MPH, MAUniversity of South Florida

Joe Solowiejczyk, RN, MSW, CDEA Mile in My Shoes

Kerri SparlingSix Until Me


WHAT’S IN THIS ISSUEFrom the Editor

PERSPECTIVES

Dialog with the Devil

Let’s Grow Together

Trust Your Team

Talking About the Highs & Lows: It’s Not Just About Sugar Level

Looking at Diabetes Mellitus & Its Complications From a Different Angle

RESEARCH

Provider Attention to Weight of Pediatric Latino Patients: Opportunity for Communication to Prevent Type 2 Diabetes

Understanding Stress Among Adults Diagnosed with Type 2 Diabetes at a Younger Age

Using Photo-Elicitation to Explore Young Adult Perspectives on Coping with Diabetes

MOVING FORWARD

Two Sides of the Same Story: Communication Can Get Everyone on the Same Page and Lead to Happier Endings

What to Expect in Future Issues of PLAID

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06AUDIENCE PERSPECTIVESFive individuals provide their perspectives about why communication is important with diabetes. A physi-cian, a mother of children with diabetes, a certified diabetes educator, a person living with diabetes, and a researcher share their stories and experiences.


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PROVIDER ATTENTION TO WEIGHT OF PEDIATRIC LATINO PATIENTSJavier I. Rosado, PhD, Suzanne Bennett Johnson, PhD, Angel Rafael Braña-López, MD, MPH, MSBI, Giuliana Farias, PsyD, Elena Reyes, PhDIn an effort to motivate youth to adopt positive health be-haviors aimed at addressing or preventing obesity and its health consequences such as type 2 diabetes, providers should consider using a recently developed toolkit designed to help guide these discussions.

UNDERSTANDING STRESS AMONG ADULTS DIAGNOSED WITH TYPE 2 DIABETES AT A YOUNGER AGEAshley N. Wingert, MPH, L. Nicole Johnson, Dr.PH., M.P.H., M.A., Stephanie T. Melton, M.A., M.P.H.With an increase in the number of young adults being diagnosed with type 2 diabetes, it is important to under-stand the psychosocial challenges they face. Stress factors, psychosocial health, and self-management are topics that should be addressed with this population.

USING PHOTO-ELICITATION TO EXPLORE YOUNG ADULT PERSPECTIVES ON COPING WITH DIABETESStephanie T. Melton, M.A., M.P.H., L. Nicole Johnson, Dr.PH., M.P.H., M.A.Young adults face significant challenges in coping with the effects of diabetes. In this study, 30 young adults with dia-betes provide us with a glimpse of their experiences and per-sonal coping mechanisms through the use of photography and written narratives.


Martin Wood, Editor in ChiefDOI: http://dx.doi.org/10.17125/plaid.2015.40

Welcome to the first issue of The PLAID Journal, a

journal for and by people living with and inspired by diabetes!

The seed for this journal was planted on May 15, 1981. That was the day I was diagnosed with type 1 diabetes and began what has be-come a lifetime of trying to learn from and fig-ure out this disease. I was two years old.

When you’re diagnosed with something like type 1 diabetes at such a young age, you haven’t yet learned to carry the weight of the world on your shoulders and pretend that it is effortless. You’ve only recently learned to carry yourself around on your own two feet. However, as far back as I can remember, diabetes has been a part of who I am. What to many could seem a malfunction, a weakness, a threat, and a crutch to lean on has simply been a part of who I am.

I try to imagine diabetes as a person. We’ll call him Fred. Fred is someone who does not dis-criminate against any demographic or personal characteristic. Fred perceives every single one of us as equals. For some of us Fred simply waves as we walk by, with maybe a gentle smile, as if to say, “I’ll see you down the road, dear friend.” Others, Fred never seems to notice at all as they go about the adventures that this world has to offer. Then, there are those of us who Fred be-comes quite fond of. Fred sees our strength, our passion, and our zest for life. He sees all of the

burdens that we are carrying, and all of the bur-dens that we will carry in the future. And he chooses us. Fred attaches himself to our side, sometimes long before we even notice, and, be-cause he is with us, forces us to grow in ways that we could never have imagined.

I don’t view Fred, or diabetes, as a villain. I can’t. I am more valuable to this world with diabetes than I could ever be without it, and for that I am grateful.

Diabetes has made me who I am, and it has made all of the people in the following pag-es who they are. Within this journal, you will meet a variety of people touched by diabetes, regardless of what type of diabetes they have been gifted with in their lives. You will meet people with diabetes, just like me. You will meet friends and loved ones of people with diabetes, who support us, love us, and admire us for far more than just our courage to live every day with a chronic disease. You will meet healthcare professionals who work to improve how we live with and understand diabetes, including endo-crinologists, primary care physicians, certified diabetes educators, and more. You will also hear from researchers, and through their academic expertise and curiosity, gain from their perspec-tives about the disease.

FREDI’m with


Letter From the Editor

Everyone featured in The PLAID Journal wants to help make life with diabetes better. It takes time and years of practice and research. Despite all we know, there is still so much mis-understanding in this world about diabetes. Misinformation relating to diabetes can be found everywhere: From the in-ternet, to supermarket tabloids, to urban legends, and even in the belief structures that help define who we are as human beings. None of us wants to admit to ourselves or anyone else that there might be something wrong with us. From the time we are children, we are told to sit up straight, don’t cry, walk it off, and put a smile on our face. We pride ourselves on a strong, confident appearance, showcasing ourselves to the world that we have no weaknesses, no faults, and noth-ing holding us back from greatness.

With diabetes, we are forced to examine the grains of sand in the hour glass and consider the value of each and every one of them. We are given the op-portunity to accept a lifestyle that is at times com-pletely unfair, and the opportunity to make positive decisions amidst that unfairness. Where diabetes was considered a death sentence just over a century ago, today it is a disease that we can live with and still find success and longevity rivaling that of peo-ple without diabetes. But it is never easy, and we are stronger because of it.

The famous futurist, computer scientist, and in-ventor Ray Kurzweil once said, “Death gives mean-ing to our lives. It gives importance to time. Time would become meaningless if there were too much of it.”

We all have a limited amount of time on this swirl-ing mass of water and dirt we call home. It’s what we do with that time that defines us, not diabetes. We are defined by how we talk to each other, share our stories, and leave our legacies and dreams be-hind for others to follow. We are defined by the choices that we make to inspire the change in the world that we want to see. We are defined by all of the incredible things that we, as people with diabe-tes, can accomplish beyond the finger pricks and needle sticks.

Every person in this world can make a difference in the lives of someone else. We are all people with di-

abetes, because we are all touched by someone who has dealt with the disease. Almost every person on this planet either has diabetes or knows someone who does. As people with diabetes, we have learned to carry ourselves and each other through the good times and bad. We are never, in any way, limited by diabetes, unless we choose to be. Together, we can change how we view diabetes, and the message that we send when we communicate about it. We can choose to focus on the successes rather than the failures. We can choose to embrace the highs and overcome the lows. Together, we can make a difference.

--MARTIN


Audience Perspectives

By Kerri SparlingDOI: http://dx.doi.org/10.17125/plaid.2015.38

Diabetes has made my body broken in ways I don’t read-ily admit, but I am sometimes forced to acknowledge.

People talk about my daughter’s chances of developing the disease and they always give me what they think is a comforting comment – “At least it would be the devil you know,” – but that doesn’t ease my boxed-away fears and I usually end up saying, “Yeah,” through gritted teeth because I don’t know how to explain that this disease isn’t the devil I know. It’s the devil that I think I know, but it still tricks me and the road takes unexpected turns.

Diabetes communicates with me all the time. It tells me things through my glucose meter, and my retinal screenings, and my insurance company co-pays. A glucose meter read-ing that’s out of range feels like a jab at my ego; an A1C in the same vein feels like a judgment on my worth as a person. Every bit of feedback I receive from my disease feels like one I have to consciously reposition, reminding myself that my job is to do my best, and its job is to minimize my efforts. And talking about this part of diabetes can be hard for me, at times, because I don’t want anyone feeling bad or think-ing I’m looking for attention when I communicate some of the challenges of life with diabetes, but at the same time, I am looking to be heard.

Because diabetes isn’t just in my pancreas. Or on my lab work printout that gets mailed alongside my electric bill and the leaflet about lawn service. Diabetes gets right into my head, into my mind, and frays the edges of my emotional health. I feel happy and healthy the majority of the time, but diabetes does play a huge role in the moments that make me feel vulnerable.

DEVILDIALOG

Sometimes communicating about diabetes doesn’t go very well, and those moments are disappointing. When I was diagnosed with diabetic eye disease two years ago, my retinal specialist made the diagnosis to his computer screen. “You have macular edema,” he said almost casually, the click of his mouse button marking the “IDDM, Complicated” button in my electronic medical record. I had been living with di-abetes for 26 years at the time, and this was my first marked complication. I was so disheartened to hear this news. I felt guilty and scared. But I couldn’t convey anything that I was feeling, or even ask the questions I needed to ask, because my doctor never turned around to acknowledge me. I was a routine moment in his day of seeing patients with diabetes. So much was communicated in his lack of desire to literally face the patient he was diagnosing.

It goes without saying, but I’ll say it anyway, that I wished he’d looked me in the eye and made me feel like someone human.

Sometimes communicating about diabetes goes remarkably well. Like the first time I tested my blood sugar in front of my best friend, while we were working at the same breakfast restaurant. “My mom has type 2 diabetes,” she said. “Oh really?” I replied, finishing up my test. “Yeah. And you have type 1, right? I’m in nursing school so I’m learning. Do you want to take the earlier start or the later one tomor-row morning for the Sunday shift?” And that was that. She let me know she was educated, that she didn’t critique me, and that we had more to talk about than diabetes. Her abil-ity to ask questions without making me feel judged has been

with the



might be thinking about donating their time, energies, and finances to type 1 research, funding, and advocacy to be deterred by the fact that sometimes we look fine. What those outside of this condition need to understand is that this perception of “fine” is all relative. One day you can be fine, and the next, things can be deeply and profoundly changed.

Why talk about it? Because it’s there. It’s there all the time, even in the moments when I want to pretend that it’s not. I walked down the aisle on my wedding day with an insu-lin pump carefully hidden in my wedding dress, a careful pocket added among the folds of fabric. I gave birth to my daughter, and as the sound her of first cries hit the air, a flash of “Am I still too low to hold her?” raced across my mind. I wonder if I’ll ever be without it. I wonder if hard work always pays off with good health. So many emotions are encased in a disease that I don’t want but I still have, and my life goes on, despite this diagnosis that continues to and forever will mark every moment I experience. It is the first thing I think about when I wake in the morning, and it is the caboose in my last train of thought each night before bed.

Talking about something that frightens us like the “devil” removes its stronghold over us and for those around us. I can’t make diabetes shut up, but I won’t let it out talk me or take over my life.

Diabetes will be in headlines and on television shows, and health and mainstream media websites will occasionally turn their attention on the disease so many of us live with and care for every day. It’s in those moments when we need to show the world that even though we seem fine, we still need better treatments and a cure for this mess. We need to talk about it. Sharing our stories is important, and we can make a difference in diabetes in our lifetimes. Fine is status quo. Fine is tolerating stereotypes instead of chang-ing them. Fine is waiting patiently for things to change, or keeping the things that bother us under wraps.

But we can do better. We must talk about it. By com-municating with one another, with our healthcare teams, and with the societal ecosystems we inhabit, we can change perspectives, minds, and the world. Together, we can do better.

some of the best discussions about diabetes I’ve ever had.

And there are times when I communicate about diabetes, despite my desire to keep it quiet some moments. Like when I’m low in a public place and profoundly unsettled, drawing me to the nearest stranger so I can tell them my name and what I might need if I’m unable to keep myself upright.

Communicating can be hard, but even the hard discussions are necessary – maybe more so than the easy ones. I wish that doctors knew how their words can make or break an interaction. It can be hard to tell your doctor that you don’t like the way they talk to you, but what if they are un-aware? I feel very lucky that phrases like “this is your fault” and “non-compliant” haven’t ever been uttered by my en-docrinologist, but so often these phrases are common parts of routine medical appointments. I wish my doctor knew when I was lying about the things I’m doing, or not doing, so she could be armed with the right information to help me work through issues I’m not quick to admit.

I wish my friends knew how being able to shoot up at the dinner table without our conversation skipping a beat means so much to me. Or how much I appreciate when my husband doesn’t make any arguments about my daily trips to the running trail. Or how my grandmother always made an attempt at creating a sugar-free dessert for me at family gatherings. Diabetes is not an often discussed topic, but it’s not taboo. It’s discussed as often as everything else, which helps bring it to a baseline of normal.

It’s this weird dance, the one between feeling like diabetes profoundly affects my day-to-day health, both emotionally and physically, and the feeling that diabetes is just a blip on my daily radar. It’s even weirder to try and articulate those feelings.

I am fine. I think? That’s part of the dance – feeling and seeming fine and actually being fine, even though my body is dealing with something serious every moment of every day. Is it an invitation for a pity party? Nope. But it’s a reminder that even though I feel fine, and I mostly am “fine,” there’s a part of me that permanently needs tending to, and ignoring it only leads to tougher roads. The lows, the highs, they feel like ships passing by, but what they may be leaving in their wake scares me.

It doesn’t mean I want people to ignore the severity and pervasiveness of this disease. I don’t want people who



By Larry Deeb, MDDOI: http://dx.doi.org/10.17125/plaid.2015.35

Recently I had the profound privilege to give a gradua-tion lecture to a group of physicians in China. These

500 physicians had spent several years in a course organized by the China Diabetes Society. Over 12 weekends during two years they had learned the latest in diabetes care. I decided to title my talk “So you want to live to be 90!”, for I truly believe we have reached the tipping point where, with modern care, people with type 1 diabetes can expect to live as long as their peers. Regrettably such is not always the case due to two main factors. For a long life with diabetes, one must have good care as well as access to all the needed supplies for care. While the Chinese physicians now have

the knowledge, their ability to provide care is limited by ac-cess to needed tools for their patients. While more acute

LET’SGrowTOGETHER


there and in other countries around the globe, even here in America, I am too often unable to get the needed supplies for the children I care for. That is not the point of this edito-rial, but it cannot be left out of the diabetes story. We must continue to work so that people with diabetes have access not only to knowledge, but also to all the essential supplies in adequate amounts to successfully manage diabetes.

As I was working on this editorial, I met a new family with diabetes. Approaching 40 years caring for children with di-abetes, I still marvel at the change the diagnosis brings to a family. No one who has not lived with diabetes in a child can ever truly understand the magnitude of commitment needed to be successful. I have often said, and maybe even that isn’t enough, how much I respect the work required of people with diabetes. One of my most poignant mem-ories comes from a young woman who I had first met at 18 months of age and followed her until after high school. She had married, and with her husband deployed for a year, asked if I would see her as she spent time at home with her parents. She reminded me that next to her father I was the

man she had known longest in her life. What a privilege, and what a responsibility! Chronic medical problems create a long-term bond between physician and patient.

I have also attended diabetes camp for over 40 years. The weeks with children as my responsibility have helped drive the respect I feel. One mother said I could never under-stand what it was like to put her 5 year old to bed; I told her about the 50 that I put to bed. We both worried about our charges. So I hope the reader understands that it is tough, but we still have to push for success. With diabetes, one really never is away from the disease. How I feel right now, what am I going to do in the next hour, what will I eat, and how will it all fit together? Diabetes is never just take a pill and forget about it. It truly demands 24/7 attention and accountability.

How then does a physician work with families for suc-cess? How are things different now, and what have 40 years taught me? Our medical school at Florida State University has openly advocated for patient-centered health care. Cer-tainly this is not new in quality diabetes care. My mentor Don Etzwiler used to draw a diagram with the patient at the center. It is perfectly clear that the interaction between physician and family with diabetes is a mere speck in the overall experience with diabetes. I frequently remind par-ents that they, too, have a license to practice diabetes medi-cine for their child along with me. Part of my job is to help them learn to do that. I often tell older children that they also have jobs and I have congratulated them on doing their jobs well. Once, when things were not just where we wanted them, I was asked by an astute child if I was planning to do my job better because it was perfectly clear that the overall management had not achieved all the goals we had outlined.

Reflecting on families who have been successful gives me the opportunity to share some of my observations about how we made it so. First of all, these families have made it a point to come to see me. More than half the people who see me drive more than 100 miles for a visit. I know and respect that it takes time from work and time from school to keep an appointment. However, making diabetes that important is a critical variable for success. Children know what their parents consider important. Taking the time to manage dia-betes, including visits to the doctor, makes a powerful state-ment to everyone: Parent, child, and physician.

Children grow and change. I have been told more than once that the family came to see me, we made some chang-es, they worked for a while, and now it is clear things need



updating. Of course, children are a moving target, growing and developing and changing. Diabetes changes with them. The management has to change too. This is all part of the need for regular care and frequent communication.

How do we interact, doctor, parent and child? First and foremost, it is collegial. Diabetes cannot be managed in a model where the doctor dictates. Why? Because the doc-tor simply cannot know all the details of the home life and situation. This means, then, that the physician must ask and work hard for the family to be open and forthright. It is never them against me. I need to hear what is possi-ble and what is not possible. I need to hear what they can and cannot do, or even what they are unwilling to do. I do not live with them and share their daily activities, stresses, and burdens. Maybe, however, with all this time and expe-

rience, I have seen a similar situation and can offer advice about how others were successful. Sometimes I just have to listen, and I have no good solution.

Figuring out how to communicate that the physician perhaps knows more about the con-dition in general, but not necessarily about this individual person, can be a delicate dance. That is why one has to create an atmosphere of give and take, talking and listening, teaching and learning, in every encounter. Over time, the patient comes to trust that he will be seen and helped, but not judged. Because I watch children grow and mature, the process is often uneven. Times come where all is not easy and

the adolescent is not eager to do all or anything that we ask. As a colleague reminded me, we just wait them out and are there when they are ready for change.

I truly believe these are exciting times for diabetes. Research is racing towards better care. We can now offer opportu-nities to grow and remain healthy for decades. Taking this long-haul approach as we care for people with diabetes offers the best hope for success. I hope The PLAID Journal offers the reader clues to better care and a better understanding of working together -- physician and person with diabetes -- to achieve success.

WE CAN NOW OFFEROPPORTUNITIES TO GROW AND REMAIN HEALTHY FORDECADES.

Next Issue

PREGNANCY& DIABETES

Have research, a case study or perspective on pregnancy and diabetes?

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By Lori Blanton, CDEDOI: http://dx.doi.org/10.17125/plaid.2015.33

I noticed right away that he was hesitant to speak with me. After I shared with him that I, at a similar age,

was newly diagnosed with type 1 too, he began to trust me more and more. I listened to him explain his rou-tine, and it seemed as though he was doing everything right—though his medical record stated otherwise. He was testing his blood sugar, calculating his insulin cor-rectly, and his injection technique was perfect. I asked him, “How long does your vial of Lantus last?” He in-

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nocently replied, “I’ve been using it since I was diagnosed in December.” Voilà! He was using expired basal insulin and didn’t even realize it. No one in his past two hospital stays asked him this question. In my five years as a Certified Di-abetes Educator (CDE), I’ve observed many patients in sim-ilar situations who were not necessarily “noncompliant” but simply had not learned basic diabetes management skills.

Another patient, newly diagnosed with type 2 diabetes, was placed on a common diabetes medication. The patient was told he would have some gastrointestinal side effects and that the side effects should go away within a few weeks. Unfor-tunately, these side effects kept worsening, and he struggled to take the medication and live with his new diagnosis. The patient self-discharged his medication, and decided to join a diabetes education class that is facilitated by Certified Di-abetes Educators. After learning of the common side effects of the drug he was prescribed, the patient confessed that he had stopped taking his medication and was getting used to eating what he considered to be “diabetic foods,” which are foods heavy in alternative sweeteners and often labeled as “Sugar-Free” on consumer packaging. He was eating many, many sugar-free products, causing his gastrointestinal dis-tress to become worse and worse. Fortunately, we were able to help the patient to restart his medication and give him the information that he was missing about the importance of sugar alcohols and moderation.

People with diabetes (PWDs) deserve a trustworthy health-care team. PWDs and CDEs openly discussing issues as part of this team is essential in helping the patient achieve diabetes goals. However, it is not always an instant connec-tion; like all relationships, it requires constant maintenance. The patient can help the healthcare team understand chal-lenges and successes by keeping all lines of communication open and honest.

Diabetes is a never-ending game. However we define suc-cess, we all want to “win,” but there are many challenges along the way that are part of the reality of living with a chronic condition like diabetes. As a CDE and a PWD my-self, I live with the same challenges that my patients encoun-ter, and I have seen the best results both personally and pro-fessionally when we are able to troubleshoot and conquer these challenges together. I try to remind patients that they have the right and the privilege to advocate for themselves, and should be encouraged to ask all of the questions that they have when meeting with the various members of their healthcare team. Oftentimes, the CDE may be very easy to get in touch with, and wants you to reach out to them

and ask questions and get support. PWDs should use that resource and not wait until the next visit.

If members of your healthcare team are difficult to com-municate with, it may be time to find new champions and teammates for your health. There are many healthcare pro-viders in a wide variety of capacities. Finding someone that you can trust to help and share information about your dia-betes may be a lot closer than you think. Talk to your CDE about what you need. If you don’t have a CDE, ask your primary healthcare team for a referral. It’s your life, your diabetes, and your health; don’t settle!



TALKING ABOUT THE

HIGHSIt’s Not Just About Sugar Level

& LOWS


By Meri SchuhmacherDOI: http://dx.doi.org/ 10.17125/plaid.2015.37

I only have one brain. It belongs only to me, and no matter how hard I try, I can’t read minds. Also, I can’t think for

everyone else – brains just aren’t wired to do that.

My boys don’t believe it.

They like to think that I know their blood sugar trends on a visceral level, like they are somehow just a part of who I am. They like to believe that I have all the answers without knowing all the questions, and they also like to believe that they don’t have to remember anything, because I’ll remem-ber for them.

I have four boys. That’s a lot of remembering to keep up with.

On top of that, three of my boys have type 1 diabetes, so you can imagine why my swollen brain is full. Without ef-fective communication, I am completely overwhelmed, and lost. I don’t have a crystal ball; hence, “I do not magically know what your blood sugars have been at lunch for the past few weeks.”

Encouraging teenage boys to communicate is just as much fun as poking a finger in one’s eye. Some boys like to share, especially young ones, but generally, once they hit puberty it’s all over. Boys who were once self-reliant and the endo-crinologist’s superstar, suddenly revert back to their helpless younger years.

Take this for example: “What? I was supposed to give myself insulin for that pizza? Don’t you usually tell me to first!”

My solution to all of this is dialogue.

Talking to the boys consistently about their routine and their day gets the juices flowing and helps quell issues that have been rising to the surface. When diabetes is concerned, ignorance is not bliss. Ignoring diabetes, or giving diabetes limited attention, will lead to complacency. Good habits easily slip through the cracks when no one is interested in you.

So, how does one balance the diabetes talk with the every-day talk? I don’t want my boys to think that all I care about is making sure that they test their blood sugars, but at the same time I don’t want them to think they aren’t held ac-countable either. Conversations need to happen. Most of the time they are short and to the point; other times they

are longer and deeper in nature. Regardless, they need to be approached delicately and with their best interest in mind.

I like to lie on my boys’ beds when they are eyeball deep in their computer screen. It annoys them to no end, but I don’t leave. “Tell me about you,” I say. They roll their eyes and say they’re in the middle of a game, (which by the way, they are always in the middle of a game). I stay anyway. “I’ll watch. I miss you; I just want to catch up.”

I ask about their friends. I ask about the best part of their day and the worst part of their day – one high, one low. Then, I ask about their blood sugars: “How have your lunchtime numbers been?” They know. If they’ve been high lately, they will tell me, but the information is never offered up without me initiating the conversation; that’s why my reaching out is so important.

With teenagers I suppose it’s just that way. Well, with boys anyway. I’m no authority on the teenage girl.

But isn’t this something that we can all relate to? Often peo-ple in our lives struggle with everyday problems, and it’s rare for someone to take a moment to say, “Hey. How has it been going? I heard your grandmother was ill, how is she doing? Do you like your new pump? Have you noticed changes in your numbers since the weather changed?” Simple opening statements can open up a waterfall of information – in-formation that the person may haven’t even internalized yet. “Now that you mention it, my numbers have been low since the heat wave started.”

The more something isn’t discussed, the more it becomes like lint under the bed; completely forgotten about, and defi-nitely nothing considered important. A lot of people don’t like to volunteer information unless they’re approached. It’s important to remember that opening those lines of commu-nication is up to us, the people that want to help. Who are we? Friends. Family. Classmates. Doctors. Volunteers.

So many people bottle up information and emotions. Re-leasing those thoughts and feelings is the best therapy there is. In this day and age we think it’s meddling to ask personal questions. But it’s ok to ask a question if it’s sincere, and it’s certainly ok to put a hand on someone’s shoulder and say, “Really, how ARE you doing?”

Sincerity and a willingness to help can lead to the best con-versations.

Blame, and discouragement just lead to closing off. If you don’t care about me, or don’t think highly of me, I’m not



going to be honest with you, and I’m certainly not going to be vulnerable with you.

An example of this would be, “You’re numbers have been high every night for the past three weeks. Why are they high? What are you eating? You’re obviously not giving enough insulin. Why aren’t you trying harder?” The person being questioned only hears, “Blame. Your fault. You are a loser. If you cared you’d work harder.”

If I were a parent or a medical professional, a better way to discuss this might be, “I see your numbers have been high in the evening, let’s work together to find a solution. I know you’ll feel better, and sleep better if we can get your numbers lower before bed. Where do you think we should start?”

If I were a friend, I might say, “What can I do to learn more about diabetes? I can see it is a lot of work. Is there a way I can support you?” The problem lies in the fact that friends will often say, “Whoa! Whenever I see you test your num-bers, I’ve noticed that they have been awful! Isn’t that really bad?!”

Effective communication is thoughtful and caring, not blaming.

I’m no communication guru, but I am a mom and someone who has been floating around the diabetes community long enough to see too much ineffective communication. I know that people care, but delivery is everything. An easy rule of thumb is asking yourself, “How would I feel if someone said this to me?”

Because the bottom line is, if someone feels judged, they won’t communicate. It’s a good thing for all of us to take a step back and evaluate how we’ve been trying to help. If we haven’t been authentic in our desire to help, it’s a good bet our outstretched hands have been batted away.

Everyone needs a friend. I don’t think we can go wrong if we try hard to be one.

EVERYONE NEEDS A FRIEND.I DON’T THINK WE CAN GO WRONG IF WE TRY HARD TO BE ONE.



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INSURANCE, HEALTHCAREPOLICIES & DIABETES

Spring 2016



Gail T Galasko, PhDDOI: http://dx.doi.org/ 10.17125/plaid.2015.36

Researchers advance knowledge through discovery. There is often a significant time lag between when new findings are initially communicated in the scientific literature and when they become generally

disseminated. Therefore, in order to provide the best treatment for those living with diabetes, I would like to encourage those working with diabetes to look at the bigger picture of diabetes and its complications by raising awareness of some newer research findings in the field.

LOOKING AT DIABETES MELLITUS & ITS

COMPLICATIONS

From a Different

Angle



Diabetes is known to result from lack of insulin action. In-sulin is the primary hormone responsible for controlling the storage and utilization of cellular nutrients. Insulin decreas-es blood glucose, stimulates glucose transport into mus-cle and fat, promotes glucose storage as glycogen, inhibits hepatic glucose production, stimulates amino acid uptake and protein synthesis (in both muscle and liver), and inhib-its breakdown of fat and protein. These actions of insulin are known as its short-term metabolic effects, and are the best known effects of insulin. Although the mechanisms by which insulin regulates the above metabolic events are still unknown, it is the deregulation of these functions that is believed to be the cause of insulin resistance in type 2 dia-betes mellitus.

Along with its short-term metabolic effects, insulin acts on almost every cell and tissue in the body where it exerts im-portant regulatory actions. It regulates gene transcription, thus affecting the synthesis of key enzymes, it has important effects on the cell cycle, and it protects cells from apoptosis (programmed cell death). In addition to its growth regulat-ing effects, recent advances have shown that insulin plays an important role in the central nervous system (CNS). Insu-lin is involved in neuronal survival. It regulates neural pro-liferation, apoptosis and synaptic transmission, and it plays a role in memory and cognition. For example, insulin has been shown to protect synapses against Alzheimer’s linked toxins. In short, insulin is a master hormone with multiple effects.

Diabetes mellitus (DM), a group of metabolic syndromes characterized by hyperglycemia, is due to lack of insulin action. In pre-diabetes and type 2 diabetes, cells develop resistance to the actions of insulin. As a result of decreased insulin action, blood sugar concentration increases. This in-crease in blood sugar occurs as a result of decreased glucose transport into fat and muscle, decreased use of glucose in the body, and increased conversion of amino acids into glu-cose (gluconeogenesis).

Conventional wisdom has been that diabetes complications are due to high circulating glucose levels. These complica-tions include kidney failure, peripheral neuropathy, delayed wound healing which may lead to amputations (especially lower limb), risk of heart disease and stroke, hypertension, and sexual dysfunction. While this may be true for some of the complications of diabetes, the evidence suggests that the non-metabolic effects of insulin have a major role in the development of diabetic complications.

For example, periodontal disease and amputations may re-sult from not only high glucose levels, but could also be the result of fibroblast (fibroblasts are the main cells that form connective tissue) changes in the body. It has been docu-mented that fibroblasts isolated from people with diabetes have decreased proliferation and increased apoptosis, which could be the mechanism responsible the delayed wound healing seen in those with periodontal disease and those re-quiring amputations.

A lack of insulin may be the cause of other complications as well. Insulin has been shown to relax blood vessels, and the loss of this effect could result in hypertension. People with diabetes are also more susceptible to infection and have reduced ability to deal with infection. This, too, is probably due to lack of insulin action. Additionally, it has been doc-umented that type 2 diabetes mellitus and insulin resistance are associated with Alzheimer’s. Research is showing that di-abetes impairs hippocampus dependent memory, synaptic plasticity and adult neurogenesis. Evidence of insulin’s pro-tective role in the CNS, documented above, suggests that it is the lack of these actions of insulin that is responsible for these complications of diabetes.

In conclusion, several lines of evidence suggest that a de-crease in the non-metabolic effects of insulin plays an im-portant role in the development of diabetic complications. I believe that further study of insulin signaling, and increased understanding of how insulin causes its many and varied effects, will lead to a better understanding the causes of di-abetic complications. This in turn will lead to better ways to prevent or treat them. We are likely going to find that elevated blood sugar levels are only one facet of diabetes. We should be open-minded to new information, and be ready to widen our thinking about diabetes and its complications to include new directions.


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ABSTRACTObjective: Diabetes is one of the most common chronic illnesses among pediatric patients, and the number of youth living with this condition is expected to grow—particularly among minority ethnic youth. Type 2 diabetes, historically a disease of older over-weight adults, is now being diagnosed in children, along with a rise in childhood obesity. Unfortunately, primary care providers infrequently communicate the weight of pediatric patients. The purpose of this study was to assess communication of weight-re-lated information between providers and Latino children and their parents during well-child office visits.

Research Design and Methods: This study utilized chart reviews and structured interviews to assess the level at which weight-relat-ed information was communicated to Latino children and their parents during well-child office visits.

Results: Results indicated that providers are inconsistent in their provision of weight information and are more likely to include weight-related chart documentation when children are younger and when they have a high body mass index (BMI). Parents’ in-tent to take corrective actions to improve their child’s diet and ex-ercise was more likely when the provider documented that weight information was provided in the child’s chart.

Conclusion: Findings from this study contributed to the develop-ment of a toolkit designed to improve primary care providers’ be-havioral skills for implementation of clinical guidelines, including routine assessment of weight and patient-centered interventions in the treatment of obesity.

Javier I. Rosado, PhD

Suzanne Bennett Johnson, PhD

Angel Rafael Braña-López, MD, MPH, MSBI

Giuliana Farias, PsyDElena Reyes, PhD

DOI:http://dx.doi.org/10.17125/plaid.2015.30

PROVIDER ATTENTION TO WEIGHT OF PEDIATRIC LATINO PATIENTS:Opportunity for Communication to Prevent Type 2 Diabetes


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INTRODUCTIONAccording to the Centers for Disease Control and Preven-tion (CDC), diabetes is one of the most common chronic illnesses among pediatric patients and its prevalence is in-creasing [1]. Estimates indicate the prevalence of diabetes in pediatric patients under the age of 20 at 2.2 per 1,000 [2]. With the dramatic increase in childhood obesity, type 2 diabetes has begun to receive increased attention. In 2001, the SEARCH for Diabetes in Youth study estimated that approximately 3,700 U.S. youth under the age of 20 were being diagnosed with type 2 diabetes annually [3, 4]. Recent estimates project that by 2050 up to 84,131 youth will be diagnosed with type 2 diabetes [5]. Researchers have predicted that the increase in the number of youth living with type 2 diabetes will be primarily among patients of minority ethnic groups – including Hispanic/Latinos [5, 4].

An elevated Body Mass Index (BMI) has been found to be associated with increased insulin resistance and the in-creasing prevalence of type 2 diabetes in youth [6]. Type 2 diabetes can lead to serious health consequences including cardiovascular disease, long-term morbidity and increased mortality [7]. Given the burden of type 2 diabetes and its complications, the American Diabetes Association [8] and the U.S. Preventive Services Task Force [9] recommend screening at-risk individuals for diabetes risk, which in-cludes routine assessment of BMI as a means of improving weight and ultimately lowering the risk for type 2 diabetes.

BMI use has diagnostic benefits during medical encoun-ters since it can facilitate a more scientific and objective identification of obesity – particularly in comparison to visual assessment or ambiguous growth charts [10]. BMI information may also enhance a health provider’s ability to communicate risks to parents by serving as a tool which frames the information as a health concern. Despite the recommendations, research suggests that overweight status and obesity continues to go underdiagnosed in the pediat-ric primary care setting [10, 11]. Perrin, Flower and Am-merman conducted a survey with pediatricians to deter-mine how frequently BMI information was utilized [12]. Their results indicated that only 11% of providers reported always using BMI data to determine if a child was indeed overweight. A 2008 national survey of primary care pro-viders found that less than half of the providers assessed child BMI percentiles regularly and only 18% of providers reported having referred children for further evaluation/management of their weight [13]. Most (58%) reported

never, rarely, or only sometimes tracking their patients’ weight or weight-related behaviors over time. Similarly, few parents and children/adolescents reported being told their weight status by healthcare professionals. CDC data from the 1999-2002 National Health and Nutrition Ex-amination Survey showed that only 36.7% of overweight children and adolescents (ages 2-19) had been told by a healthcare provider that they were overweight [1]. Pediatric minority patients and their families in particular, tend to receive less than optimal information related to nutrition and physical activity [14]. Research on healthcare provider weight assessments for pediatric patients of high risk ethnic groups is rare [15]. Given the rise of obesity and the risk for type 2 diabetes among Latino youth, it is imperative to examine how the problem can be addressed across settings, including primary care.

The purpose of the current study was to assess communica-tion of weight-related information between providers and Latino children and their parents during well-child office visits. We report on how the findings from the study con-tributed to the development of a toolkit designed to help primary care clinicians implement clinical guidelines that recommend routine assessment of weight and patient-cen-tered interventions in the treatment of obesity.

RESEARCH DESIGN AND METHODS

Participants

Participants were Latino parents and children, ages three to seventeen, who presented for a well-child office visit. Par-ticipants were recruited during a 15-month period from the pediatric department of a community health center serving a predominantly Spanish-speaking population lo-cated within a rural agricultural area of Southwest Flor-ida. A total of 495 parents agreed to participate. A very small number (N=23) of high school age adolescents were dropped from the analysis, yielding a final sample of 472 with a mean child age of 6.4 years.

Procedure

The study was approved by the Florida State University In-stitutional Review Board (IRB). During a 15-month peri-od, parents and their children who were identified by the clinic’s intake process as Hispanic were invited to partici-pate in the study. A bilingual research assistant explained


Research

the study to the parents, and interested mothers signed the consent form for an interview and review of their child’s medical record. The interview was conducted immediately following the office visit. All questions were directed to the parent in their preferred language (English or Spanish).

Interview questions were adapted from a previously devel-oped questionnaire designed to measure parent reactions to BMI screenings [16, 17]. Interview questions addressed only the child being seen on the day of the office visit, even if the parent had other children – present or not. Questions assessed parental endorsement of whether or not the treating primary care provider (i.e., physician or nurse practitioner) addressed the child’s weight (e.g., “During today’s office vis-it, did the doctor talk to you about your child’s weight?”), and parental intent to take action in order to improve their child’s weight (e.g., “After today’s office visit, do you plan to change what your child eats or how much exercise your child gets?”). Questions also assessed parental concern about the child’s weight (e.g., “Are you concerned or worried about your child’s weight?”). Demographic information collected included the child’s country of origin, school grade, and eli-gibility for free or reduced price lunch.

After the provider completed documentation of the office visit, each child’s chart was reviewed. Charts were in the form of an electronic health record, thus the software pro-vided BMI data calculated from height and weight infor-mation entered by nursing staff on the date of the office visit. Using this information, children were placed into one of four weight categories: obese (BMI percentile ≥ 95); overweight (BMI percentile ≥ 85 and <95); healthy (BMI percentile ≥ 5 and < 85); and underweight (BMI percentile < 5) [18]. Charts were also reviewed for provider documen-tation related to the child’s weight status. Documentation was treated as a dichotomous variable (yes, documentation was included or no, documentation was not included). The following provider actions were considered as valid forms of documentation: free-text indicating that counseling was giv-en during office visit; referral provided to nutrition; referral provided to behavioral health (for assistance in treatment of overweight); referral provided to other relevant specialty (e.g., endocrinology); and ICD-9 diagnoses of overweight/obesity applied. A total of four providers (one nurse practi-tioner and three physicians/pediatricians) rendered services to the children participating in this study.

Data Analysis

Descriptive data were presented as means, standard devia-tions (SDs), frequencies, and percentages. Multiple regres-sion models were run to determine predictors of provider documentation of a child’s weight status in the medical record (yes/no), parental report that the provider gave at-tention to weight during the office visit (yes/no), and paren-tal intent to take corrective actions to improve their child’s weight (yes/no). Model assumptions were checked and validated (independently/identically distributed errors, in-dependence between predictors). Data were analyzed using Stata, version 11.

RESULTSAll children were of Hispanic ethnicity, with the majority of Mexican descent (Table 1). The sample was predominate-ly in preschool or elementary school and almost all of the school-age children qualified for free or reduced price school meals, reflecting the low socio-economic status of the sam-ple. The majority of participating parents were mothers; the mean age of parents was 32.1 years. Table 1 displays classi-fication of participants by weight category. Close to 47% of children were either in the obese (27.0%) or overweight (20.1%) category.

Level of Attention Given to Weight

Table 2 depicts the percentage of children whose chart in-cluded weight-related documentation, and also reports the percentage of parents who endorsed that the provider spoke to them about their child’s weight during the same visit. For the healthy weight group, charts of males included docu-mentation more often than those of females; in the over-weight and obese categories, the opposite was true. Howev-er, no significance was found when the gender effects were examined in the obese (x2 = 0.8598, p = 0.3538), over-weight (x2 = 0.0009, p = 0.9756) and healthy (x2 = 0.0885, p = 0.7661) categories. Across weight categories, weight lev-el did have a significant effect on provider documentation for both males (x2 = 9.5880, p = 0.0083) and females (x2 = 17.9307, p < 0.0001). The higher a child’s weight, the more likely the provider was to include chart documentation, re-gardless of the child’s gender.


Research

Table 1: Characteristics of the Study Sample (N =472)

Characteristic N % or mean (SD)

Child Gender MaleFemale

241231

51.1%48.9%

Parent GenderMale/Father Female/MotherOther Guardian

2143714

4.4%92.6%3.0%

Child Hispanic EthnicityMexicoGuatemalaOtherCubaPuerto RicoEl Salvador

3577726532

76.0%16.4%5.5%1.1%0.6%0.4%

Parent AgeChild AgeChild Grade Level

PreschoolElementaryMiddle School

Free or Reduced School Meal

25216654306

32.1 (6.6)6.4 (3.2)

53.4%35.2%11.4%97.5%

Child BMI 471 18.8 (4.3)

Child BMI percentileObese > 95th percentileOverweight >85th to <95th percentile Healthy > 5th to < 85th percentile Underweight < 5th percentile

126942434

27.0%20.1%52.0%0.9%

A greater number of parents reported that the provider com-municated their child’s weight than the number of charts documenting that weight was discussed, indicating that perhaps providers did not always include documentation despite having addressed the child’s weight with parents. Several non-significant gender differences were observed when examining parental report of provider attention to weight. In the healthy weight category, parents of males re-ported that weight was discussed more often than parents of females; in the overweight and obese categories, parents of females more frequently endorsed provider attention to weight.

Table 2. Weight Documentation in Chart and Parent Report of Information (N = 472)Characteristic % Children

with Chart Documentation

Addressing Weight

% Parents Endorsing Provider Addressed Weight

All Male Female

29.92%29.03%30.83%

70.00%70.45%69.57%

Obese All Male Female

50.39%46.27%55.00%

73.68%71.19%76.36%

Overweight All Male Female

25.51%23.68%26.67%

63.83%61.11%65.52%

Healthy Weight All Male Female

21.83%22.96%20.51%

70.51%72.50%68.42%

Attention to Weight by Provider

Table 3 indicates the percentage of charts including weight documentation, across three weight categories, by each of the four providers included in the study. It also includes the percentage of parents who endorsed that the provider spoke to them about their child’s weight. Consistency of documen-tation varied among providers. Provider 3 most frequently included documentation across all three weight categories: obese (69.4%), overweight (43.3%), and healthy (33.7%). Provider 2 did not include chart documentation for over-weight or healthy weight children and infrequently docu-mented the weight of obese children (19.2%). Similarly, for all weight categories, parents least often endorsed Provider 2 having discussed their child’s weight: obese (22.7%), over-weight (12.5%), and healthy (22.6%). Given the frequency of chart documentation included by Provider 3, as expected, parents whose children were treated by that provider fre-quently endorsed that their child’s weight was addressed. Although Provider 1 was not as consistent as Provider 3 in documenting in their child’s chart, parents endorsed that both providers discussed weight at similar rates.


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Table 3. Weight Documentation in Chart and Parent Report of Information by Provider (N = 472)Weight Status & Provider

% Children with Chart

DocumentationAddressing

Weight

% Parents Endorsing Provider Addressed Weight

Obese Provider 1 Provider 2 Provider 3 Provider 4

35.7%19.2%69.4%47.4%

84.6%22.7%89.7%76.5%

Overweight Provider 1 Provider 2 Provider 3 Provider 4

4.8%0%

43.3%13.3%

81.8%12.5%81.5%47.1%

Healthy Weight Provider 1 Provider 2 Provider 3 Provider 4

2.2%0%

33.7%10.0%

84.8%22.6%84.4%47.8%

Parental Report of Intent to Take Corrective Action

Following the office visit, parents were asked if they intend-ed to engage in some form of corrective action (e.g., change child’s diet or exercise) to improve their child’s weight. Figure 1 compares the percentage of parents who reported intent to take action when the provider documented hav-ing discussed weight versus when no documenta-tion of weight status was included in the medical record. Parents more frequently reported plans to take corrective action when weight-related doc-umentation was included by the provider in the child’s chart (65.69%) than when no documenta-tion was included (40.46%). A two sample z-test on these proportions yields a p-value of 0.0003, thus indicating that these percentages are signifi-cantly different.

Predictors of Provider Documentation, Parental Report of Provider Attention to Weight, & Parental Intent to Take Correc-tive Action

Table 4 depicts the multiple regression results predicting provider documentation of a child’s weight status in the medical record, parental re-

port that the provider gave attention to weight during the office visit, and parental intent to take corrective actions to improve their child’s weight.

The provider, child’s weight status (obese or overweight), child’s age, gender, and whether or not the parent was con-cerned about the child’s weight were tested as predictors of the provider including weight-related documentation in the child’s medical record. Significant predictors included indi-vidual provider, obese weight status, child age, and parental concern about the child’s weight. Provider number 3 was most likely to document weight-related information in a child’s chart. Overall, providers were more likely to include chart-documentation if the child was obese (vs. overweight). Charts of older children were more likely to include doc-umentation. If a parent reported being concerned about his/her child’s weight, the provider was also more likely to include documentation in the child’s medical record.

For the outcome variable of parental report that the provid-er did discuss weight during the office visit, only provider documentation and child’s age were significant predictors. When a provider included weight documentation in the medical record, parents were more likely to indicate that the provider did in fact communicate their child’s weight during the office visit. Parents of younger children were especial-ly more likely to indicate that the provider addressed their child’s weight status during the office visit.

When examining predictors of parent’s intent to take some form of corrective action to improve their child’s weight,

Figure 1. Provider Documentation andParent Intent to take Corrective Action

0

10%

20%

30%

40%

50%

60%

70%

80%

65.69%

40.46%

ProviderDocuments

Chart

No ChartDocumentation

Documentation of Weight in Medical Chart


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several predictors were significant: child age, overweight or obese status, parental report that a provider addressed weight during the office visit, and parental concern about their child’s weight. Parents were more likely to report in-tent to take action with older children. Additionally, par-ents were more likely to report intent to take action if their child’s weight was either overweight or obese. If a parent reported that their child’s provider discussed weight during the office visit, and/or if parents were concerned about their child’s weight, they were more likely to report intent to take corrective action.

CONCLUSIONFindings in this study provide further evidence of the high prevalence of overweight/obesity status among Latino chil-dren – a finding that highlights the increased risk for type 2 diabetes among this population. Despite the risk, results

indicate that providers are inconsistent in their provision of weight information during well-child office visits. Lack of documentation may explain some of these inconsistencies as parents in this study endorsed provider attention to weight more often than what was documented in their child’s med-ical record. Providers were more likely to include chart doc-umentation for older children and for obese children. In-terestingly, overweight status was not a significant predictor of provider attention to weight. Providers were also more likely to include documentation for children of parents with concerns about their child’s weight. While it is encouraging that parental concern may have triggered additional atten-tion from the provider, parents may not always recognize their child’s overweight status [19]; this may be even more common among Latino parents [10, 20, 21]. Providers of pediatric primary care are well positioned to “catch” these otherwise missed opportunities to raise parental awareness, particularly as children are frequently seen for preventive care and treatment of common illnesses [20, 22]. Encoun-

Table 4. Multiple Regression Results for Provider Documentation, Parental Report of Provider’s Attention to Weight, Parental Intent to Take Corrective ActionOutcome variable and predictors Coefficient p Provider documentation of the child’s weight statusProviders (w.r.t.provider1) 2 3 4Child Obese (yes/no)Child Overweight (yes/no)Child AgeChild GenderParental Concern (yes/no)

-0.85243092.6759680.99733281.9313490.28489930.13281780.0859041.189475

0.171<0.001 0.056<.001 0.490 0.003 0.770<0.001

Parent report of provider’s attention to weightProvider Documentation (yes/no)Child AgeChild GenderChild Obese (yes/no)Child Overweight (yes/no)Parental Concern (yes/no)

2.363136-0.07062840.0072322-0.3183499-0.4743096-0.5421538

<0.001 0.045 0.975 0.314 0.100 0.062

Parent’s intent to take action (yes vs no)Child AgeChild GenderChild Overweight (yes/no)Child Obese (yes/no)Provider Documentation (yes/no)Parental report of provider attention (yes/no)Parental Concern (yes/no)

0.08684510.18393070.58865591.1479240.32335850.71711542.058191

0.014 0.428 0.039<0.001 0.231 0.010<0.001


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ters with providers also present an opportunity to identi-fy and address parental misperceptions of their children’s weight status [15].

Parents in this study were more likely to endorse intent to take corrective actions to improve their child’s diet and ex-ercise when they also reported that their provider discussed the child’s weight during the clinic visit. Additional research is needed to determine to what extent provider counseling around weight leads to actual behavior change.

This study is limited by data collection at a single site, as well as by the use of a convenience sample. Given the study design, there are cross-sectional limitations, such as the in-ability to infer causality. The structured interview utilized included a yes/no question to ask parents if the provider ad-dressed their child’s weight; further studies may consider us-ing more in depth methods to better assess the quality/type of information they perceived having received. Future stud-ies may also use direct observations to assess what weight in-formation is provided during office visits. While interviews conducted for this study were in the subject’s preferred lan-guage, the study did not analyze if English or Spanish was used during the office visit. The extent to which this may have influenced patient-provider communication around weight needs further analysis.

Future Directions: The HealthyMe Toolkit

Results of this study highlight two significant findings. First, primary care providers are not consistently communicating weight status, and thus missing an opportunity for early in-tervention and prevention of chronic diseases such as type 2 diabetes. Second, clinician attention to weight is a predictor of parent report to take corrective action – an encouraging finding. These results highlight the need for interventions to improve provider attention to weight. Organizations such as the American Academy of Pediatrics [22] have provid-ed guidelines with clear recommendations and protocols around obesity treatment. These include recommendations that healthcare providers follow a patient-centered approach, assess patient readiness to change and incorporate behavior-al interventions to engage patients in positive health behav-iors according to their level of readiness to change. However, several obstacles to the provision of weight counseling have been identified including lack of office time [19, 23-25] and lack of comfort or skill around counseling families [13, 10, 20, 21, 26].

In response to these barriers, the Healthy Me Toolkit [27]

was developed as a set of behavioral interventions, or tools, that can be used to 1) assess a young patient’s readiness to change (i.e., to adopt positive health behaviors); and 2) mo-tivate youth to adopt agreed upon positive health behaviors specifically aimed at addressing or preventing obesity and its health consequences, such as type 2 diabetes and other chronic conditions. The tools are based on the Transtheoret-ical Model of Behavior Change [28] and incorporate behav-ioral interventions and motivational interviewing principals [29]. The toolkit provides worksheets designed to be uti-lized as discussion guides to facilitate dialogue between the healthcare provider and the patient. Using the worksheets, providers can help patients set realistic, achievable goals and monitor their new behaviors that produce and maintain weight loss. Future research will evaluate the impact of the Healthy Me Toolkit at improving provider self-efficacy in obesity treatment and its effectiveness at helping pediatric patients move through the stages of change – and ultimately maintaining positive behavior change and a healthy weight status.

ACKNOWLEDGEMENTSPortions of this study were funded by the Robert Wood Johnson Foundation through its national program, Salud America! Support for the development of the Healthy Me Toolkit was received by the Florida Department of Health. The final three co-authors listed contributed equally to the development of this manuscript. No financial disclosures were reported by the authors of this paper.

F o r A H e a l t h i e r C o m m u n i t y


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16. Johnson SB, Pilkington LL, Deeb LC, Jeffers S, He J, Lamp C. Prevalence of overweight in north Florida elementary and middle school children: effects of age, sex, ethnicity, and socioeconomic status. J Sch Health. 2007;77(9):630–6. DOI: http://dx.doi.org/10.1111/j.1746-1561.2007.00243.x.

17. Rosado JI, Johnson SB, McGinnity KA, Cuevas JP. Obesity among Latino children within a migrant farm-worker community. Am J Prev Med. 2013;44 Suppl 33:S274-81. DOI: http://dx.doi.org/10.1016/j.ame-pre.2012.11.019.

18. Krebs NF, Himes JH, Jacobson D, Nicklas TA, Guilday P, Styne D. Assessment of child and adolescent over-weight and obesity. Pediatrics. 2007;120 Suppl 4:S193–228. DOI: http://dx.doi.org/10.1542/peds.2007-2329D.


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19. Kubik MY, Story M, Davey C, Dudovitz B, Zuehlke EU. Providing obesity prevention counseling to chil-dren during a primary care clinic visit: results from a pilot study. J Am Diet Assoc. 2008;108(11):1902–6. DOI: http://dx.doi.org/10.1016/j.jada.2008.08.017.

20. Perrin EM, Finkle JP, Benjamin JT. Obesity preven-tion and the primary care pediatrician’s office. Curr Opin Pediatr. 2007;19(3):354–61. DOI: http://dx.doi.org/10.1097/MOP.0b013e328151c3e9.

21. Waldrop J, Ferguson LA. Pediatric overweight or obesi-ty: does the label really matter? J Am Acad Nurse Pract. 2008;20(5):251–8. DOI: http://dx.doi.org/10.1111/j.1745-7599.2008.00315.x.

22. Barlow SE, Expert Committee. Expert committee rec-ommendations regarding the prevention, assessment, and treatment of child and adolescent overweight and obesity: summary report. Pediatrics 2007;120 Suppl 4:S164-92. DOI: http://dx.doi.org/10.1542/peds.2007-2329C.

23. Whaley SE, McGregor S, Jiang L, Gomez J, Harrison G, Jenks E. A WIC-based intervention to prevent ear-ly childhood overweight. J Nutr Educ Behav. 2010;42 Suppl 3:S47–51. DOI: http://dx.doi.org/10.1016/j.jneb.2010.02.010.

24. McKee MD, Deen D, Maher S, Fletcher J, For-nari A, Blank AE. Implementation of a pilot prima-ry care lifestyle change intervention for families of pre-school children: lessons learned. Patient Educ Couns. 2010;79(3):299–305. DOI: http://dx.doi.org/10.1016/j.pec.2010.02.025.

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27. Rosado JI, Farias G, Reyes E, Braña-López A. The healthy me toolkit: behavioral interventions for adoles-cent obesity [Internet]. Immokalee: The Florida State University College of Medicine; 2015 [cited 2015 Feb]. <http://www.healthymeflorida.com>.

28. Prochaska JO, Johnson S, Lee P. The transtheoretical model of behavior change. In: Shumaker SA, Ockene JK, Riekert KA, editors. The handbook of health behav-ior change. 3rd ed. New York: Springer; 2009. p. 59-83.

29. Miller WR, Rollnick S. Motivational interviewing: pre-paring people to change. 2nd ed. New York: Guilford Press; 2002.



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TECHNOLOGY INNOVATIONS

& DIABETES

Fall 2016


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ABSTRACTObjective: Little data exists regarding the emerging population of adults diagnosed with type 2 diabetes (T2DM) at a younger age. This study was conducted to gain insight related to diabetes distress and self-efficacy among adults diagnosed with T2DM be-tween 18-40 years of age.

Research Design and Methods: : Individuals diagnosed with T2DM between 18-40 years of age (n = 118) completed an online survey in either English or Spanish. The survey included two validated scales to understand levels of diabetes distress and self-efficacy. Independent samples t-tests were conducted to examine differ-ences among gender, while Pearson correlation coefficients were conducted to examine the relationships of current age, age of di-agnosis, duration of diabetes, HbA1c values, and insulin use with multiple domains of diabetes distress and self-efficacy.

Results: Both regimen-related distress and interpersonal distress were reported at levels worthy of clinical attention. Overall di-abetes-related distress, emotional-burden, and physician-relat-ed distress were slightly below the level of clinical significance. Bivariate analysis suggests strong positive relationships between HbA1c values and each domain of diabetes distress. Additionally, negative correlations were found between insulin use and overall diabetes distress, emotional-burden, physician-related distress, regimen-related distress, and interpersonal distress.

Conclusions: Findings suggest adults diagnosed with T2DM at a younger age experience levels of diabetes distress worthy of clin-ical attention, particularly regarding regimen-related and inter-personal distress. T2DM programs should include psychosocial education and communication strategies for improving social support to enhance overall quality of life for this population.

Ashley N. Wingert, MPH

L. Nicole Johnson, Dr.PH., M.P.H., M.A.

Stephanie T. Melton, M.A., M.P.H.


UNDERSTANDING STRESS AMONG ADULTS DIAGNOSED WITH TYPE 2 DIABETES AT A YOUNGER AGE


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INTRODUCTIONType 2 diabetes (T2DM) is typically considered a late-on-set, adult disease; however, with the overall population rise in childhood obesity and decrease in physical activity, there has been a significant increase in the number of young adults diagnosed with T2DM [1]. An analysis of diabetes trends among American youth funded by Centers for Dis-ease Control and Prevention (CDC) and National Institutes of Health (NIH) found the prevalence of T2DM increased 21% among youth under 20 years of age from 2001-2009 [2]. Given the recent development of this population of adults diagnosed with T2DM at a younger age, little data exists regarding their general experiences. This study and its results attempt to address this shortage of data, and aims to reveal evidence of this population’s interaction with phy-sicians regarding stress factors, psychosocial health, and self-management.

Media and health care professionals typically focus on the physical complications that can result from life with T2DM. There are, however, significant psychosocial challenges asso-ciated with diabetes which are often unaddressed and war-rant discussion. As the literature attests, diagnosis of T2DM can lead to emotional distress regarding lifestyle changes, adjustments with relationships, and social networks [3]. Upon receiving a T2DM diagnosis, younger adult patients (under 65 years old) were more likely to experience anxi-ety as a result of their diagnosis [4]. Furthermore, younger adults (18-44 years of age) with chronic diseases were also more likely to report lower social support compared to older adults, resulting in lower health-related quality of life and social well-being [5].

T2DM is a complex disease and self-management can be difficult for many. Self-efficacy, the perceived ability to perform a health behavior, is largely believed to influence the behaviors individuals adopt and maintain [6]. A study conducted by Sakar, Fisher, and Schillinger found that self-efficacy was associated with diabetes self-management behaviors across race/ethnicity and health literacy levels [7]. Another study determined greater self-efficacy predicated more frequent blood glucose testing, less frequent skipping of medication and binge eating, and closer adherence to an ideal diet in individuals living with T2DM [8]. Findings from these studies suggest self-efficacy is important for the successful management of diabetes.

Although higher self-efficacy is linked to successful diabetes management, it is important to recognize that even when diet, physical activity, and medication are properly main-tained, blood sugar levels may not be effectively controlled because stress can act as a confounder. Everyday life stressors such as work deadlines and family disagreements can ex-acerbate diabetes management challenges [3]. It has been suggested that diabetes-related stress affects the ability to self-manage diabetes, thus negatively impacting metabolic control and psychological well-being [3, 9, 10]. Beverly and colleagues affirmed the overwhelming nature of life with di-abetes in a study of T2DM patients who revealed that they often felt they could never do enough to successfully man-age their diabetes. In this work, researchers noted a “sense of hopelessness characterized by an increased vulnerability” related to disease management [11, p. 1184]. Another study found participants with higher diabetes-related distress had more complications and poorer glucose control than those with lower diabetes-related distress [12]. These findings highlight the significant impact of diabetes-related distress and suggest diabetes self-care measures may cause additional stress for individuals with T2DM. In fact, researchers found diabetes distress, defined as extreme anxiety specifically re-lated to diabetes, to be the most prevalent long-lasting factor associated with hyperglycemia in T2DM [13].

Since young adults diagnosed with T2DM represent a rel-atively new population, very little research has been con-ducted to understand the experiences of living with diabetes among this population. This research sought to investigate if and how well health care professionals were communicat-ing with their young adult patients about their psychosocial health and gauge patients’ levels of diabetes distress, partic-ularly in regard to regimen-related and interpersonal distress since these forms of distress significantly affect self-manage-ment efficacy.

In general, studies pertaining to diabetes tend to center around either adults with diabetes ages 55+ or children at risk for developing diabetes. Hence, the population of young adults living with T2DM is under-represented in the scientific literature. In response to this identified gap in the literature, this study describes quantitative analysis conduct-ed as preliminary exploration of the experiences of adults diagnosed with T2DM between the ages 18-40 years.


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RESEARCH DESIGN AND METHODS

Aims

The aims of this study were to assess the levels of self-efficacy and diabetes-related distress among adults diagnosed with T2DM between the ages 18-40 years.

Specific research questions included:

1. To what extent do adults diagnosed with T2DM at a younger age perceive diabetes care and management self-efficacy?

2. To what extent do adults diagnosed with T2DM at a younger age experience distress as a result of their dia-betes?

Data Collection

Quantitative data were gathered through the collection of anonymous, online survey responses. The survey included pertinent demographic questions such as gender and level of education. Insulin usage, along with two validated scales to measure diabetes management self-efficacy and diabetes-re-lated distress, were also included.

Measures

Diabetes Care and Management Self-EfficacyDiabetes management self-efficacy among participants was determined using the short form of the Diabetes Empower-ment Scale (DES-SF) [14]. This scale was designed to pro-vide a brief, overall assessment of the self-efficacy of people with diabetes through statements such as, “In general I be-lieve that I am able to turn my diabetes goals into a workable plan,” and “In general I believe that I can ask for support for having and caring for my diabetes when I need it.”

For the original DES, Anderson and colleagues calculated validity, reliability, and utility as a measure of diabetes-relat-ed self-efficacy [15]. Validity was established through com-parison with two previously validated subscales of the Dia-betes Care Profile (DCP): the DCP Positive Attitude scale and the DCP Negative Attitude scale. Additionally, factor and item analysis were conducted to develop subscales that were coherent, meaningful, and had an acceptable coeffi-cient α. The psychometric analyses from this study (n = 375) resulted in a 28-item DES (α = 0.96) with three sub-

scales: Managing the Psychosocial Aspects of Diabetes (α = 0.93), Assessing Dissatisfaction and Readiness to Change (α = 0.81), and Setting and Achieving Goals (α = 0.91). The correlations between the three DES subscales and the DCP Positive Attitude scale ranged from 0.32 to 0.59, in-dicating that patients with greater levels of self-efficacy had a more positive outlook about their diabetes. The correla-tions between three DES subscales and the DCP Negative Attitude scale ranged from 0.38 to 0.59, indicating that pa-tients with greater levels of self-efficacy have a less negative outlook on their diabetes [15]. Additionally, Anderson and colleagues found the DES had positive correlations with the self-reported Diabetes Understanding scale, indicating that patients with greater levels of self-efficacy have a better un-derstanding of diabetes [15].

To allow for brief overall assessment of diabetes-related self-efficacy, Anderson et al. developed an eight-item short form of the DES (the DES-SF) [14]. The DES-SF was created by choosing the item from the 28 DES items with the highest item to subscale correlation from each of the original conceptual domains. The reliability of the DES-SF using the original data set was α = 0.85. The DES-SF was then administered in a new study (n = 229) that resulted in a reliability of α = 0.84 [14].

Participants responded to each question on a Likert scale ranging from 1 (strongly disagree) to 5 (strongly agree). The scale was scored by averaging the scores of all completed items with higher scores indicating greater levels of self-ef-ficacy.

Diabetes-Related DistressDiabetes-related distress was examined through the Diabetes Distress Scale (DDS) which explores overall diabetes distress and is broken-down into four subscales: emotional-burden, physician-related distress, regimen-related distress, and di-abetes-related interpersonal distress [16]. The validity and reliability of the DDS scale was determined through the in-strument’s inclusion in a larger battery of questionnaires used in diabetes studies at four diverse sites (n = 725). Explor-atory factor analysis revealed four factors consistent across sites that matched the critical content domains (emotional burden, physician-related distress, regimen-related distress, and diabetes-related interpersonal distress). The mean cor-relation between the four subscales was high (r = 0.82), but the pattern of inter-scale correlations suggested that the sub-scales, although not totally independent, tapped into rel-atively different areas of diabetes-related distress. Internal reliability of the DDS and the four subscales was adequate


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with the overall DDS α = 0.93, emotional burden α = 0.88, physician-related distress α = 0.88, regimen-related distress α = 0.90, and interpersonal distress α = 0.88. Validity co-efficients yielded significant correlations with the Center for Epidemiological Studies Depression Scale, meal planning, exercise, and total cholesterol [16]. In addition, Ortiz-Para-da, Baeza-Rivera, and Myers conducted a study to deter-mine the psychometric properties of the DDS in T2DM Chilean patients using reliability analysis, exploratory factor analysis, and correlations with depressive symptoms scale. HbA1c biomarkers were conducted with a T2DM sample (n = 76) from Temuco City, Chile. The results revealed a reliability of α = 0.74, a four-factor structure, and evidence for convergent validity with both the depressive symptoms scale and HbA1c marker [17]. Hence, the DDS was found to have acceptable psychometric properties that allow for the assessments of four subscales in both clinical and re-search settings.

The DDS is a 17-item measure that uses a Likert scale to score each statement from 1 (no problem) to 6 (a serious problem). Statements include: “Feeling that diabetes is tak-ing up too much of my mental and physical energy every day,” and “Feeling that my doctor doesn’t give me clear enough directions on how to manage my diabetes” [16]. The authors of the DDS determined a mean item score of 3 or higher to be a level of distress worthy of clinical attention.

Participants

Participants were recruited for the study through the dis-semination of flyers and advertisements via email and so-cial media websites such as Facebook. Community partners including the American Diabetes Association, TuDiabe-tes, and Diabetic Living assisted with dissemination of the anonymous online survey by including information about the study in their newsletters, emails, and company Face-book pages. The online survey link was made accessible for one year, with survey reminders consistently emailed and posted to media websites throughout the year to encourage participation.

Participants self-selected to participate and were eligible if diagnosed with T2DM between the ages of 18-40, possessed English or Spanish language skills, and had access to a com-puter with internet services. A total of 118 individuals met the eligibility requirements with a subset of willing partici-pants (n = 24) excluded due to missing (n=3) or incomplete data (n=21).

Research procedures were approved by the University of South Florida Institutional Review Board. Informed con-sent was obtained from participants. As an incentive for re-sponding to the survey, participants were offered the oppor-tunity to participate in a $50 e-gift card drawing with one winner selected for every twenty-five participants.

Data Analysis

The levels of both self-efficacy and diabetes-related distress were determined using the mean scores on the DES-SF and DDS. In addition, the mean scores for each distress subscale were also calculated to note specific areas of distress.

Bivariate analysis examined the relationships between cur-rent age, age at diagnosis, duration of disease, HbA1c mea-sures, insulin use with self-efficacy, overall diabetes-related distress, and each distress subscale through Pearson cor-relation coefficients. Similarly, differences among men and women were examined using independent samples t-tests. All statistical analyses were performed using SPSS (IBM Corp., v. 22).

RESULTSParticipants were predominantly Caucasian females with a mean HbA1c value of 7.53 (Table 1). The mean age of participants at diagnosis was 30 and approximately half of participants used insulin to help manage their diabetes in addition to non-insulin medications.

Diabetes Care and Management Self-Efficacy

Participants reported a mean score of 3.44 (SD = .80) on the DES, indicating adults diagnosed with T2DM at a younger age feel confident in their ability to properly manage their diabetes and meet their diabetes goals. An independent sam-ples t-test revealed no significant differences in self-efficacy between men and women. Likewise, Pearson correlation coefficients found no significant correlations between cur-rent age, age at diagnosis, duration of disease, insulin use, or HbA1c score with diabetes management self-efficacy.

Diabetes-Related Distress

The mean score for overall diabetes-related distress was 2.78 (SD = 1.15), below the 3.0 level of clinical significance. Likewise, the mean score for emotional-burden was slightly


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Table 1 - Characteristics of Younger Adults Living With DiabetesParticipants (N = 118)

Characteristic Frequency (n) % Valid

Age in years Mean = 38.47, SD = 8.72, Range = 18-60

Age diagnosed with T2DM Mean = 30.00, SD = 8.63

HbA1c at last physician visit Mean = 7.53, SD = 1.76, Range = 5.0-13.3

Gender Female 83 70.3% Male 35 29.6%

Race / ethnicity White 87 73.7% African American 5 4.2% Latino / Hispanic 6 5.1% Asian / Pacific Islander 6 5.1% Native American / Alaskan Native 5 4.2% Multi-racial / Multi-ethnic 9 7.6%

Marital status Single 36 31.9% Married 63 55.8% Divorced 7 6.2% Separated 4 3.5% Widowed 1 .8% Other 2 1.8% Level of education Less than high school 1 .8% High school / GED 17 14.7% Some college 28 24.1% College degree 43 37.1% Some graduate school 9 7.8% Graduate degree 18 15.5%


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below the same 3.0 level of clinical significance (2.88, SD = 1.27), as was the mean score for physician-related distress (2.60, SD =1.16). The subscales for regimen-related distress (3.26, SD = 1.40) and interpersonal distress (3.00, SD = 1.44), however, were reported at levels worthy of clinical attention.

Independent samples t-tests revealed no statistically signif-icant differences between men and women for any of the diabetes-related distress domains. Similarly, Pearson correla-tion coefficients found no significant associations between current age, age at T2DM diagnosis, or duration of disease with any of the distress measures.

Pearson correlation coefficients did reveal significant cor-relations between HbA1c measures and each diabetes-relat-

ed distress domain at the 0.01 level: overall diabetes-relat-ed distress (r = .50), emotional-burden distress (r = .56), interpersonal distress (r = .51), regimen-related distress (r = .43), and physician-related distress (r = .41) at the 0.01 level. These findings suggest a strong positive relationship between HbA1c and overall diabetes-related distress, emo-tional-burden distress, interpersonal distress, regimen-re-lated distress, and physician-related distress. Hence, higher HbA1c measures are associated with greater levels of overall diabetes-related distress and each distress subscale. Pearson correlation coefficients also revealed weak negative relation-ships between insulin use and overall diabetes distress (r = -.29) at the 0.01 level, and emotional-burden (r = -.24), physician-related distress (r = -.26), regimen-related distress (r = -.24), and interpersonal distress (r = -.26) at the 0.05 level.

Table 1 - Characteristics of Younger Adults Living With DiabetesHealth insurance coverage Covered under parent plan 8 8.1% Student health insurance plan 1 1.0% Employer sponsored plan 77 77.8% Medicaid 13 13.1%

Family members with T2DM Yes 60 73.2% No 22 26.8%

Use of non-insulin medications to manage diabetes Yes 58 71.6% No 23 28.4%

Use of insulin to manage diabetes Yes 43 50.6% No 42 49.4%

Health Professionals seen within last year Endocrinologist 45 38.1% Registered nurse 27 22.9% Primary care physician 90 76.3% Diabetes educator 32 27.1% Dietician 26 22.0% OB-GYN 21 17.8% Psychologist / Psychiatrist / Therapist 19 16.1%


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Forty-three percent of participants reported a clinically sig-nificant score of 3.0 or higher for overall diabetes-related distress. In addition, over half of the participants (57%) re-ported a significant score for regimen-related distress, 50% reported a significant score for interpersonal distress, and 45% reported a significant score for emotional-burden dis-tress. These findings indicate adults diagnosed with T2DM at a younger age experience levels of diabetes distress worthy of clinical attention in relation to management regimen and psychosocial well-being.

Correlations between Self-Efficacy and Diabetes-Re-lated Distress

Respondent’s level of self-efficacy was strongly correlated with overall diabetes-related distress (r = -.46), emotion-al-burden (r = -.47), regimen-related distress (r = -.44), interpersonal (r = .39), and physician-related distress (r = .38). The strong inverse relationships between self-efficacy and each domain of diabetes distress indicate lower levels of self-efficacy is associated with greater levels of diabetes-relat-ed distress.

DISCUSSIONCreating an anonymous online survey was useful for en-gaging an emerging, difficult-to-reach population. Findings from this study indicate adults diagnosed with T2DM at a younger age experience a level of diabetes distress worthy of clinical attention in relation to management regimen and interpersonal support. Additionally, results revealed a large percentage of adults diagnosed with T2DM at a younger age (43%) experience clinically significant levels of diabetes distress.

A strong, positive relationship exists between HbA1c scores and overall diabetes-related distress, emotional-burden dis-tress, and interpersonal distress along with a moderate posi-tive relationship between HbA1c score and physician-relat-ed distress. This indication that higher HbA1c measures are related to greater levels of diabetes-related distress is con-sistent with previous research. Several studies reported that life challenges associated with diabetes may cause additional stress for individuals with T2DM, resulting in a negative impact on psychological well-being and metabolic control [3, 10]. Karlsen and colleagues, for example, found adults with both type 1 diabetes and T2DM experienced difficul-ty managing their diabetes during the winter months when

diets included more enriched foods (e.g. holiday celebra-tions) and poorer conditions for physical activities. Partic-ipants generally did not know how to compensate for less physical activity and greater carbohydrate intake, resulting in self-blame for the poorer HbA1c value during the win-ter season, which negatively impacted their psychological well-being [10]. Researchers have also reported that higher HbA1c levels were associated with greater diabetes-specif-ic emotional distress [18]. Additionally, Schabert, Browne, Mosely, and Speight found diabetes-related stigma was ex-perienced across life domains, including at the workplace and in romantic relationships [19]. The same research found that diabetes-related stigma had a significant negative im-pact on psychosocial well-being; therefore, the social stigma associated with diabetes may partially account for the clini-cally significant levels of interpersonal distress found in this study. Young adults may be particularly vulnerable to stress from diabetes-related stigma due to new social experienc-es, relationships, and work environments common during young adulthood.

The association between self-efficacy and diabetes-related distress is consistent with previous findings in similar popu-lations. Nouwin and associates found that more self-effica-cious participants reported less diabetes distress in a sample of adolescents with type 1 diabetes [20]. Likewise, Delahan-ty and colleagues found that greater diabetes-related distress among adults with T2DM was explained by greater diabe-tes self-care burden and lower levels of self-efficacy [18]. Hence, individuals who felt more confident in their ability to properly manage their diabetes and reach their diabetes goals were less likely to experience high levels of diabetes-re-lated distress.

Strengths and Limitations

Findings from this study should be considered in context of certain methodological limitations. While the online survey allowed for geographic diversity, participants may not be representative of the overall population of younger adults diagnosed with T2DM. Furthermore, researchers ex-perienced difficulty in the recruitment of males, minority populations, and those with low education levels. Due to the recent emergence of young adults with T2DM, the so-cial stigma associated with T2DM, and the general difficulty recruiting minority populations (who are more likely to be diagnosed withT2DM) to participate in research, the sam-ple size for this study is relatively small [19, 21, 22]. Gener-alizability to the larger population is therefore limited with


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these findings. As with all surveyed responses and self-report measures (e.g. HbA1c), there is a possibility of socially desir-able responding, though data were collected anonymously to address this issue.

Offering the survey in both English and Spanish allowed for greater participant inclusion. However, few Spanish-based surveys received responses. Similarly, offering the survey online was useful for obtaining geographical diversity and allowing for greater participation, but only a relatively small number of individuals who clicked on the survey link actu-ally completed the survey. Hence, although the ads fostered interest in the study, individuals were not necessarily moti-vated to participate.

Future studies should recruit a larger sample that is repre-sentative of the population of younger adults with T2DM. Researchers should consider recruiting participants from settings such as county health departments and hospital emergency rooms [23]. Future studies should also exam-ine how diabetes-related distress, self-efficacy, and coping methods may vary depending on life-stage (e.g. college and starting a family).

CONCLUSIONS AND IMPLICATIONS FOR PRACTICEThis study provides preliminary insights into the stress ex-perienced by younger adults with T2DM. Although par-ticipants reported confidence in their ability to manage diabetes, they also expressed levels of regimen-related and interpersonal distress worthy of clinical attention. Addition-ally, higher HbA1c measures were associated with greater levels of diabetes-related distress, both overall and in regards to each subdomain. This study confirms the emotional and social vulnerability young adults experience in conjunc-tion with diabetes self-management challenges [11]. While results from this study do coincide with findings from re-search conducted among other populations with diabetes, it is important to note the significance of these findings in relation to young adults with T2DM.

This population has expressed needs that may not be ad-dressed in the health care setting. To address the needs of patients, health care professionals should communicate with patients about their psychosocial health and gauge patients’ levels of diabetes distress, particularly in regard to regi-men-related and interpersonal distress since these forms of

distress significantly affect self-management efficacy. Inter-ventions focusing on psychosocial issues may be useful for this population, as well as those focusing on easing the bur-den of the diabetes management regimen. There are many opportunities for greater understanding of this emerging population. Future studies should examine diabetes distress in young adults with T2DM using a larger, more repre-sentative population, explore effective coping mechanisms for this population, and evaluate effective intervention and communication strategies.

ACKNOWLEDGEMENTSAll authors contributed to the study design, data collection, analysis and manuscript reporting. The authors have no conflict of interests to disclose.

The content of this manuscript is guaranteed by the authors. This research is funded by The Patterson Foundation. This work has been previously presented at the 2014 meetings of American Diabetes Association and the American Associa-tion of Diabetes Educators.

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12. Nozaki T, Morita C, Matsubayashi S, Ishido K, Yokoyama H, Kawai K, et al. Relation between psychosocial variables and the glycemic control of patients with type 2 diabetes: a cross-sectional and prospective study. Biopsychosoc Med. 2009;3:4-12. DOI: http://dx.doi.org/10.1186/1751-0759-3-4.

13. Fisher L, Skaff MM, Mullan JT, Arean P, Glasgow R, Masha-rani U. A longitudinal study of affective and anxiety disor-ders, depressive affect and diabetes distress in adults with type 2 diabetes. Diabetic Med. 2008;25(9):1096-101. DOI: http://dx.doi.org/10.1111/j.1464-5491.2008.02533.x.

14. Anderson RM, Fitzgerald JT, Gruppen LD, Funnell MM, Oh MS. The diabetes empowerment scale-short form (DES-SF). Diabetes Care. 2003;26(5):1641-2. DOI: http://dx.doi.org/10.2337/diacare.26.5.1641-a.

15. Anderson RM, Funnell MM, Fitzgerald JT, Marrero DG. The Diabetes Empowerment Scale: a measure of psychoso-cial self-efficacy. Diabetes Care. 2000;23(6):739-743. DOI: http://dx.doi.org/10.2337/diacare.23.6.739.

16. Polonsky WH, Fisher L, Earles J, Dudl RJ, Lees J, Mullan J, et al. Assessing psychological stress in diabetes: development of the Diabetes Distress Scale. Diabetes Care. 2005;28(3):626-31. DOI: http://dx.doi.org/10.2337/diacare.28.3.626.

17. Ortiz-Parada MS, Baeza-Rivera MJ, Myers HF. Psychometric properties of theDiabetes Distress Scale (DDS) in a sample of Chilean diabetic patients [Internet]. Terapia Psicológica. 2013;31(3):281-286. < http://teps.cl/2013-en/psychomet-ric-properties-of-the-diabetes-distress-scale-dds-in-a-sam-ple-of-chilean-diabetic-patients?lang=en>.

18. Delahanty LM, Grant RW, Wittenberg E, Bosch JL, Wex-ler DJ, Cagliero E, Meigs, JB. Association of diabetes-re-lated emotional distress with diabetes treatment in pri-mary care patients with Type 2 diabetes. Diabetic Med. 2007;24(1):48-54. DOI: http://dx.doi.org/10.1111/j.1464-5491.2007.02028.x.

19. Schabert J, Browne JL, Mosely K, Speight J. Social stigma in diabetes. The Patient. 2013;6(1):1-10. http://dx.doi.org/10.1007/s40271-012-0001-0.

20. Nouwin A, Urquhart Law G, Hussain S, McGovern S, Napier H. Comparison of the role of self-efficacy and ill-ness representations in relation to dietary self-care and diabetes distress in adolescents with type 1 diabetes. Psy-chol Health. 2009;24(9):1071-84. DOI: http://dx.doi.org/10.1080/08870440802254597.

21. Centers for Disease Control and Prevention. Distribution of age at diagnosis of diabetes among adult incident cases aged 18-79 years, United States, 2011 [Internet]. Atlanta: The Centers [rev. 19 Nov 2013; cited 2014 Dec]. <http://www.cdc.gov/diabetes/statistics/age/fig1.htm>.

22. Corbie-Smith G, Thomas SB, St George DM. Distrust, race, and research. Arch Intern Med. 2002;162(21):2458–63. DOI: http://dx.doi.org/10.1001/archinte.162.21.2458.

23. Hasnain-Wynia R, Baker DW, Nerenz D, Feinglass J, Beal AC, Landrum MB, et al. Disparities in health care are driv-en by where minority patients seek care: examination of the hospital quality alliance measures. Arch Intern Med. 2007;167(12):1233-9. DOI: http://dx.doi.org/10.1001/archinte.167.12.1233.


MENTAL HEALTH & DIABETES

Spring 2017

PLAIDPeople Living with And Inspired by Diabetes®


Research

ABSTRACTObjective: Young adults with type 1 diabetes face multiple chal-lenges managing their disease and navigating the life transitions of emerging adulthood. This places them at increased risk for poor health and psychological outcomes. The purpose of the present formative evaluation study was to assess the impact of diabetes on their lives and identify salient messages for health promotion using an online photo-elicitation technique.

Research Design and Method: Thirty young adults participated by submitting photographs and written narratives describing how diabetes has impacted their lives.

Results: Diabetes negatively impacts young adults’ social connec-tions, identity, and self-perceptions; yet, mechanisms for coping and personal growth were identified among participants.

Conclusions: Young adults with diabetes face significant challenges in coping with the disease; however, they are able to reframe their experience in positive ways using effective coping strategies, such as communicating with others who understand what life with di-abetes is like and developing social connections.

Stephanie T. Melton, M.A., M.P.H.

L. Nicole Johnson, Dr.PH., M.P.H., M.A.


USING PHOTO-ELICITATION TO EXPLORE YOUNG ADULT PERSPECTIVES ON COPING WITH DIABETES


®


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INTRODUCTIONFor young adults living with type 1 diabetes (T1D), life is wrought with daily challenges. Managing T1D involves a host of personal behaviors like daily insulin injections, blood glucose monitoring, and dietary and physical activity regulation [1]. The goal of self-management is to maintain normalized blood glucose levels and avoid complications. Advances in technology and treatment options have sig-nificantly improved the longevity and health outcomes for people with T1D, yet despite advances in treatment and technology, young adults with diabetes are at risk for serious health threats such as microvascular complications, anxiety, depression, and gaps in clinical care [2, 3]. The psychologi-cal impacts of diabetes resulting in depression, anxiety, and distress can negatively affect self-management and quality of life, especially for young people [4]. Balfe and colleagues found that young adults with type 1 diabetes experienced distress regarding their daily management needs, stigma, and worry about their future [5]. In a study by Palladino et al. [6], emerging adults with diabetes report lower level of life satisfaction and life purpose than peers living without type 1 diabetes. Management challenges are often compli-cated by developmental transitions of emerging adulthood such as attending college, obtaining employment, or living independently [7].

Given the additional strain diabetes can pose in the lives of young adults, understanding the factors that impact self-per-ception and coping are crucial for addressing and discussing their needs [8].The goal of our study was to assess the in-trinsic beliefs and experiences of young adults using their own voices. The use of photography and narrative allowed young adults’ voices to be communicated in an engaging and empowering way. This qualitative study was conducted as a component of a formative evaluation of the experiences and perceptions of young adults living with type 1 diabetes.

METHODSThis project follows the tradition of participatory visual methodologies in health and community research. In par-ticular, it borrows aspects of photo-elicitation [9], a tech-nique in which images are provided by the researcher, or created by participants, to guide and enhance the depth of interviews with individuals [10]. The images serve as a con-duit for communicating tactic information that participants may take for granted in a traditional interview or focus group setting.

Image-based research methods have gained popularity in social science and health research because the use of images helps elicit and communicate personal and tactic percep-tions [11, 12]. Photography-based techniques offer strengths for qualitative inquiry, and the use of images allows for an alternate means of reflective communication [13]. Partici-pants take on an active role in research by determining what is photographed and hence guide the data collection [14-16]. Furthermore, the depth of response is enhanced be-cause the reflection process begins with the action of taking the photograph and thinking through its composition and meaning, and then the explanation of the image becomes the key focus in analysis. The combination of the image and the context in which it was created reflects the individual’s environment and perceptions [17]. This technique provides a flexible format for a range of research designs, and it elic-its information about cultural domains, physical artifacts, experiences, and environments. This methodology has also been effective in researching patient health experiences. Spe-cifically, photos have been used as integral components in studies of the experiences of adolescents with established re-nal failure [18], women’s experiences of chemotherapy [19], and employees’ perceptions and barriers to healthier di-etary and physical activity choices [20]. Furthermore, visual methods have been shown to be useful in developing health promotion messages to encourage physical activity with old-er Hispanic women [21]. The qualities of photo-elicitation make this a useful technique for exploring a chronic disease experience like diabetes that impacts all facets of one’s life.

In our study, photo-elicitation was used to assess how dia-betes impacts young adults’ experiences and self-perception. This project was a component of a formative evaluation of the efficacy of the Students With Diabetes model. Students With Diabetes (SWD) is a national organization for young adults ages 18-30 living with diabetes. The goal of the or-ganization is to promote healthier living with diabetes by providing social support and diabetes education. SWD fa-cilitates the creation of local chapters, provides diabetes edu-cation programs and resources, and hosts conferences. These programs are offered in-person and virtually.

The SWD evaluation included a survey component and a qualitative component. In the larger evaluation study, a sample of SWD members (n=76) completed a survey and HbA1c blood glucose measure while attending the 2013 SWD National Conference. The survey included quality of life measures and customized questions about participants’ experiences with the SWD program and its effects on their diabetes self-management and coping. The purpose of the


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evaluation was to assess the challenges young adults in this population face in managing diabetes, identify benefits of SWD participation, and identify ways to address young adults’ challenges through SWD program development. This photo-elicitation project was designed as a comple-mentary project to the survey study to specifically inform program planning and the development of a national social marketing campaign among SWD members.

PARTICIPANTSParticipants were recruited for the study through the Stu-dents With Diabetes membership base. The eligibility cri-teria included having type 1 diabetes and being 18-30 years old. Thirty young adults participated. All but two partic-ipants were female. The mean age was 22.2 (range 18-30 years). The average years of disease duration was 10.5 years (range 6 months-21 years). The participants resided across the United States, and all participants had access to com-puters, digital cameras or smart phones, and internet con-nections.

Due to the geographic dispersal of SWD participants across the United States, the study was designed to be completed electronically through online recruitment, email communi-cation, and a website for submissions. SWD members were targeted in recruitment efforts. Study flyers and advertise-ments were disseminated by email to the SWD member-ship database and posted on social media sites such as the SWD Facebook page and SWD Twitter page. Participants were given three months to respond to study advertise-ments. Willing participants self-selected and responded to study advertisements. Participants were provided with in-formation on the study, along with instructions for creat-ing and submitting both an image and a written narrative that responded to the research question. The study used an open-ended research prompt, “What does diabetes mean to you?” Additional cueing questions were provided to assist in writing the narratives. The additional questions were: “Who or what is in the photo?”, “What is happening in the photo?”, and “How does this photo capture what diabetes means to you?”

Through email, participants were given submission instruc-tions and directed to a submission site where consent was obtained, image and written narrative submissions were up-loaded, and a brief questionnaire was completed with basic demographic questions. Each participant used their own digital camera or smart phone to create either one photo-

graph or a collage of photos constituting one master image, along with an accompanying narrative. If necessary, a camera would have been offered for use in this project; however, this was not necessary. Using their own camera was determined not to be a barrier to participation for this population. Fur-ther, we had concern that providing a film-based camera to participants might be considered out-of-date technology [22] and would have decreased participation.

Research procedures were approved by the University of South Florida Institutional Review Board. Informed con-sent was obtained from participants through an online form. Contact information was provided to participants so that questions about the consent process could be addressed by the researchers. To further address ethical considerations, participants were informed that their images may be used for publication purposes, and that submissions could be dis-played at an exhibit during the 2013 SWD National Con-ference, which coincided with the end of the data collection phase. At the conference, thirteen participants provided permission for images and narratives to be displayed in the form of an art exhibit. Participants were also informed that including likenesses of themselves or other people in the photos was at their discretion, and that permission should be obtained before photographing other people. These steps were deemed important for protecting the privacy of the participants. Participants were offered a $20 e-gift card for participation.

ANALYSISPhotos were analyzed for content, and narratives were the-matically analyzed using Atlas.ti v.7 qualitative data analysis software (GmbH, Germany). A grounded theory approach was taken in that a priori codes were not established; rather, the codes inductively emerged from the data. The analysis began with multiple readings of the narratives and reviews of the photographs. Following the initial reading of the nar-ratives, open codes were applied to text line by line [23]. Repeated readings resulted in the refinement of codes and the creation of groups of codes into themes. The same pro-cess was followed to categorize the content and composition of the photographs. The codes were reviewed by the second author, and the coding was refined until full inter-coder agreement was reached for all data [24].


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RESULTSThe composition of the photos provided a look at the daily lives of the participants. The photographs were comprised of a variety of images and reflected the themes expounded upon in the narratives. The participant was included as a subject in 16 of the photo submissions, 7 submissions included peers, and 4 submissions included family members. Im-ages of diabetes supplies and equipment were cap-tured in 11 submissions. A total of 8 images were creatively constructed to portray an abstract con-cept or to be artistic. These images included care-fully constructed scenes of diabetes supplies, or people positioned in formation for visual effect. In one photo provided by a 20 year-old female, a circle of clasped hands is captured in sepia tones symbol-izing the strength gained from social connections (Figure 1). In another image, a blue bull’s eye target is shot with insulin syringes around the perimeter, indicating how challenging it is to reach the center goal of consistently maintaining in-range blood glu-cose measures (Figure 2). Another submission was a scene of a country road that symbolized the diabetes journey experienced by a 26 year-old female (Figure 3).

Diabetes supplies played a prominent place in many photographs. In one photograph, a 20 year-old woman arranged glucose meter test strips and insulin pump insertion sites in a heart shape at her feet while displaying her insulin pump (Figure 4). The remaining images were straightforward in their composition and typically included photos of fami-ly members or friends with smiling faces.

The desired outcome of the study was to gather a breadth of perspectives about diabetes. This was accomplished through an open-ended research question that resulted in four over-arching themes. The themes described the challenges dia-betes poses in lives, ways to cope with type 1 diabetes, how diabetes has affected identities and self-perception, and how diabetes encourages young adults with diabetes to give back.

CHALLENGES Diabetes presents struggles that impact all aspects of daily life. The challenges presented in the submissions were cate-gorized as physical, emotional, and social. The physical pain and difficulty controlling diabetes was described repeatedly. In order to maintain diabetes control, participants explained they must engage in physical tasks such as checking blood glucose, monitoring diet, exercising, and administering in-sulin and other medications. These daily tasks can be bur-densome and painful. Furthermore, the tasks of diabetes “don’t stop.” Diabetes self-care is unrelenting. One 19 year-old male participant likened the monotony of diabetes man-agement to a football stadium in his photo and narrative. He explained,

Figure 1


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“The repetitive and parallel arrangement of seats and stairs reminds me of my daily routine. Although check-ing blood sugar, correcting insulin dosage and bolusing [with insulin] can become monotonous, their signifi-cance should not be undermined…every finger prick, injection, and [insulin pump] site change contributes to the overall goal of effective diabetes management..”

Furthermore, diabetes was often described as “uncontrol-lable.” The participants have diabetes tools and technology such as insulin, blood glucose meters, insulin pumps, and continuous glucose meters at their disposal, yet it is still challenging to maintain blood glucose values within a de-sired range. Despite the significance of the physical discom-fort and pain of diabetes, the emotional pain of the disease was described as more onerous. The emotional challenges were described as more difficult to handle and mentioned more frequently across participants. Fear of complications from diabetes, feeling different from peers, and frustrations with management obstacles resulted in feelings of isolation, worry, and hopelessness. The emotional toll of diabetes was described as profound and something participants often cannot fully handle. This can leave young adults vulnerable to diabetes distress.

For some participants, the emotional toll became a personal trial. As a 21 year-old woman stated, “We bleed internal-ly, silently, invisibly…No one sees our pain, nor our joy—which they likely would understand even less…Why must I bear all to see, just to prove that I struggle constantly?” Feeling isolated in their emotions is a common theme.

The narratives also indicated how diabetes can impact so-

cial relationships. Diabetes affects relationships with fam-ily, peers, and friends. An emotional toll is also carried by parents, as well as other family members and friends who worry about the health and well-being of the young adult with T1D. This was explained by a 29 year-old woman as, “It [Diabetes] involves everyone I love and everyone who cares about me.” Management of diabetes can be a source of conflict, especially with family members or significant others. Furthermore, they described experiencing rejection from peers due to their diabetes. This further led to feelings of isolation for several participants.

COPING STRATEGIESFinding ways to cope with the demands of diabetes took on multiple forms. These coping strategies included shar-ing with others who have diabetes, deepening of spiritual faith, taking advantage of diabetes technology and tools, and maintaining a sense of humor about “uncontrollable” frustration in life with diabetes. These young adult partic-ipants recognized social connections as powerful coping mechanisms. Seeking out social support, and giving back to others helps them take personal responsibility for their lives and disease.

Several young adults in this study indicated that they use technology to cope. This was reflected in the narratives and in the content of the photographs. Items like insulin pumps are symbols of their experience worn on their bod-ies and often visible to others. Family and friends provide instrumental assistance in diabetes care, and are therefore seen as coping tools. Spiritual faith was mentioned by sev-

eral participants as a way of gaining per-sonal strength. This notion was explained by a 19 year-old woman who attributes her faith to helping her handle her diabe-tes diagnosis a year ago. She stated that, “what gets me through every single day is the faith I have in God, knowing that His love for me is unconditional and that He has great plans for my life.” Finding strength through personal beliefs helped participants aspire to better management, and humor helps when things do not go well. Humor about diabetes allowed these young adults to cope with the negative emotions, and as one female participant wrote, “laugh through the tears.”

Figure 2


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Finding other people who under-stand what life with diabetes is like was a fundamental coping mecha-nism for many participants in this study. As one young woman stated, “Diabetes is a very lonely disease, and although insulin is the best physical medicine, a community of friendship and understanding can have such a powerful impact and save lives as well.” The idea of con-necting with others who can relate is reported as extremely powerful in combatting the loneliness from feeling different due to diabetes. Connecting with the type 1 diabetes community allowed young adults in the study to feel normal and “more than the girl with the disease.” One 29 year-old female participant ex-plained that, “Everything I do will always be different than what others do. Sure I can do the same things as others but whatever I do diabetes is always there, a part of the experience, a part of the equa-tion.” Their experiences with the struggles of diabetes also lead many of them to want to give back to the diabetes com-munity. Volunteering, advocating, and pursuing careers in diabetes-related fields are mechanisms to turn their struggles into positive action. A young woman who has had diabe-tes for seven years stated that diabetes “is a continuous race where the only winners are those that keep running, despite any obstacle put in their way. It is using your own discord to help someone else going through the same thing.” Giving back helped many young adults in this study feel their strug-gle is worthwhile, and several participants reported finding personal strength by witnessing the accomplishments of others who are like them.

TRANSFORMATIONA dominant theme among respondents concerned the trans-formative experience of diabetes, which often resulted in increased personal responsibility and renewed outlooks on life. Taking control of diabetes and their own lives was a salient theme among the sample. Many described the self-ef-ficacy they gained by coming through past challenges and recognizing the positive effects of diabetes. As a 21 year-old young woman stated,

“I am grateful for my diabetes because….It motivates me to be healthy. It has taught me that balance of all things in life is crucial. It has made me organized. It has taught me to stand up for myself. It has taught me to believe in mind over matter. It has challenged me to break out of my comfort zone. It always keeps life interesting.”

Through these personal reflections, several participants ac-knowledged the negative effects of diabetes, but most high-lighted the lessons gained from life with diabetes and how diabetes has uniquely shaped who they are. This acknowl-edgement of how diabetes has changed them was described by a 19 year-old woman as, “I’m not saying diabetes is a great gift. It sucks! But I know I wouldn’t be this successful in life without it. I’m able to value life and follow my dreams to its fullest. It has taught me independence, gratitude and most importantly adversity.”

DISCUSSIONPhoto-elicitation was useful for identifying internalized coping strategies and understanding personal experiences. Through this approach we were able to identify key issues

Figure 3


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that affect young adults in this population, and determine next steps in the development of the SWD program. The open-ended approach was useful in capturing a variety of perspectives of how diabetes affects young adults. The pho-to-elicitation method allowed participants to control their self-representation and resulted in rich descriptions of per-sonal life with diabetes. The challenges young adults face are significant. The emotional strain and distress described among this sample resonate with previous research identi-fying psychological issues among people with diabetes [4]. Diabetes distress was expressed by participants in descrip-tions of the pain, frustrations, and unrelenting nature of car-ing for diabetes. As previous studies have reported, young adults in the study struggle to cope with diabetes [8], yet participants identified tools that help them function and thrive. Coping strategies included using available diabetes technology and tools, using humor to diffuse stress, relying

on spiritual faith, connecting with others and giving back. Sharing their experiences and seeing the accom-plishments of other people with diabetes was unique-ly gratifying for these young adults. This was a core theme throughout this study, and it demonstrates the benefits of peer mentoring and support highlighted in previous research on young adults with diabetes [25]. Social connections allow for these young adults living with a chronic condition to feel normal with others like themselves. Participants described how connecting with the diabetes community socially and giving back to others helps to alleviate the isolation they feel from being different than their peers. It also allowed for ex-pressing gratitude and a means to reframe their per-sonal struggles into a larger meaning. Reframing the negative aspects of diabetes into positive, self-affirming thoughts has been found to be a useful mechanism for coping, especially during the young adult transition period [26]. Through overcoming personal obstacles and illness, many of these young adults reported find-ing meaning and motivation to live healthier lives and help others live better as well. Future research could further explore the role of reframing chronic disease experiences for positive coping and personal growth [27].

Key themes from this assessment were used for pro-gram development including the need to address psy-chosocial issues in relationships, the need for up to date information on diabetes technology, and the im-portance of social support. This insight served as kin-dle for a social marketing campaign to engage young adults in the diabetes community by serving others

and advocating for diabetes. One outcome is the #SWD-Serves campaign, which is a way for SWD members to share their diabetes community service endeavors through social media. It highlights the positive contributions young adults with diabetes are making in their communities by sharing stories of service. This campaign is supplemented by edu-cational programs on advocacy and service projects such as a mentor pilot project that links young adults newly diag-nosed with type 1diabetes with volunteer peer mentors.

In this study, photo-elicitation methods were useful in the process of revealing the perceptions of this well-defined group. The potential weaknesses of the study are the small convenience sampling, which limits generalizability. The study is a component of a larger evaluation, and therefore, the present photo-elicitation method cannot be judged as a standalone method. However, the visual images proved to

Figure 4


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be a powerful form of self-expression for participants. The study also benefited from the reach and scope of recruiting made possible with internet-based interactions. Participants had time to consider and design their photo presentations and to compose their narratives of the photo. The creative staging of images and emotional depth of the narratives was made possible due to the extended time frame. The partic-ipants in this study were familiar with digital technologies and photography, and had access to a digital camera or cell phone to capture the pictures. This tech-savvy sample may be inherently different from the general population of young adults with diabetes. The participants’ willingness to share their images and stories may reflect other intrinsic differenc-es as well. In this study, the inclusion of images and narra-tives provided for rich contextual details. The results provide insights into the kinds of messages and images that resonate with this young adult population, and allowed participants to construct their own self-representation and voice.

ACKNOWLEDGEMENTSBoth authors contributed to the study design, data collec-tion, analysis and manuscript reporting.

The authors have no conflict of interests to disclose.

The content of this manuscript is guaranteed by the au-thors. This research is funded by The Patterson Foundation. This work has been previously presented at the meetings of American Public Health Association, and the American As-sociation of Diabetes Educators.

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MEASURINGSUCCESS

Fall 2017



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By Rebecca Harrington, MSLIS, AHIPDOI: http://dx.doi.org/10.17125/plaid.2015.39

Communication between provider and patient goes both ways. In order to get the most out of time spent during visits, providers and patients should consider the sample questions and tips included in this article to help facilitate communication.

THE PROVIDER’S PERSPECTIVEHealthcare providers recognize that with only 5 to 10 min-utes per average consultation, there is little time for meaning-ful dialogue between patient and provider. Asking patients “What is the most difficult part of living with diabetes?” or “What are your greatest concerns about your diabetes?” can often get right to the heart of the matter.

TWO SIDES OF THE SAME STORY:Communication Can Get Everyone on the Same Page and Lead to Happier Endings

Sample Questions for ProvidersFollow-up questions:• Confirm your understanding by repeating the

patient’s concerns back: “Let’s make sure we talk about __ and __. It sounds like you also want to make sure we cover __. If we can’t get to the other concerns, let’s…”

• Screen for emotional distress/depression: “Have you been feeling down or overwhelmed? Are you having problems sleeping or concentrating?” Using a short questionnaire, such as the WHO-5 (http://www.dawnstudy.com/News_and_activities/Doc-uments/WHO-5.pdf ), can help to monitor emo-tional well-being in patients.

• Explore barriers: “What do you think would help overcome any problems you might have with the treatment plan?”

• At the end of the appointment, be sure to ask “What questions do you have about what we dis-cussed today?”

Other tips to improve communication include:• introduce yourself to everyone in the room;

• consider the patient’s cultural background and use appropriate gestures, eye contact, and body language;

• explain rationale for tests and treatments in plain language;

• review possible side effects;

• provide written materials in the patient’s pre-ferred language when possible;

• discuss treatment goals to ensure mutual under-standing and agreement;

• assess the patient’s ability and motivation to car-ry out the plan;

• verify comprehension by asking the patient to repeat instructions; and

• summarize visit and review next steps.


THE PATIENT’S PERSPECTIVEMost patients with diabetes receive their care from a primary care physician. Primary care doctors’ appointments are usu-ally scheduled at 15-minute intervals; these appointments need to be as efficient as possible. It’s important to bring:

• the results of any home tests, such as blood sugar or blood pressure levels;

• a list of all medications (including over-the-counter), noting the doses and the frequency; and

• estimates of daily living habits (eating, drinking, exer-cise, smoking, and sleeping).

Patients who write down questions in advance are more like-ly get their questions answered since they are not struggling to find the right words. Ranking questions in order of pri-ority ensures the most important questions are addressed.

Sample Questions for Patients• What are my ABC values (A1C, blood pressure,

and cholesterol), and what do these values mean? What should my targets be?

• How do I take my medications? What should I do if I miss a dose? What are the side effects of these medications?

• What kind of dietary guidelines should I be fol-lowing? How can I eat healthy on the go—like on weekends, at work, and when going out?

• How often should I check my blood sugar level at home? Should I do it at different times of the day? How can I use the information from this monitoring to better manage my diabetes?

• What are the complications of diabetes? What lab tests or examinations do I need to get on a regular basis to lower my risk of complications?

• I have other medical problems. How can I best manage these conditions together?

• What are the signs and symptoms of low blood sugar? How do I treat low blood sugar?

• What are the signs and symptoms of high blood sugar?

• When should I test for ketones, and how do I do it?

• How should I take care of my diabetes when I am sick?

• Who else do I need to see for my diabetes care (eye doctor, endocrinologist, podiatrist, dentist, and dietitian)?

• What were the results of my lab tests? May I have a copy of my results? What do they mean?

• What if I am having a hard time dealing with di-abetes?

• How can I find out about local diabetes education programs?

• What resources are available if I’m having trouble paying for diabetes supplies?

• When should I schedule my next routine visit and how often should I be coming for appointments?

• What should I focus on prior to my next visit?

Other tips to improve communication include:• take off your shoes and socks to remind your doc-

tor to check your feet;

• bring up any physical or emotional issues, such as trouble sleeping or feeling anxious; and

• make the next appointment at the end of the cur-rent appointment.


Moving Forward

REFERENCES1. DAWN™ Dialogue tools [Internet]. Novo Nordisk;

2014 [cited 2015 Apr 20]. Available from: http://www.dawnstudy.com/toolsandresources/dawndialoguetools.asp

2. Diabetes - what to ask your doctor - type 2 [Inter-net]. A.D.A.M. Medical Encyclopedia. Atlanta (GA): A.D.A.M., Inc.; [updated 2012 Dec 11; cited 2015 Apr 11]. Available from: http://www.nlm.nih.gov/medline-plus/ency/patientinstructions/000217.htm

3. Dimensions of patient-centered care [Internet]. Nation-al Diabetes Education Program (US); [cited 2015 Apr 15]. Available from: http://ndep.nih.gov/hcp-business-es-and-schools/practice-transformation/patient-cen-tered-interactions/dimensions-of-patient-care.aspx

4. Frankel RM, Stein T. Getting the most out of the clini-cal encounter: the four habits model. J Med Pract Man-age. 2001 Jan-Feb;16(4):184-91.

5. Funnell M. Five questions to ask your health care team about your type 2 diabetes [Internet]. National Diabe-tes Education Program (US); 2012 Apr [cited 2015 Apr 20]. Available from: http://ndep.nih.gov/media/five_questions_to_ask_your_health_care_team_508.pdf

6. Haupt A. How to maximize a doctor visit: to get the most out of those 15 minutes, start preparing before you arrive [Internet]. U.S. News and World Report Health; 2011 July 26 [cited 2015 Apr 20]. Available from: http://health.usnews.com/top-doctors/arti-cles/2011/07/26/how-to-maximize-a-doctor-visit

7. Nine questions for your diabetes care team [Internet]. Joslin Diabetes Center; 2015 [cited 2015 Apr 20]. Available from: http://www.joslin.org/info/9_ques-tions_for_your_diabetes_care_team.html

8. Ten questions to ask your doctor [Internet]. Men’s Health; 2015 [cited 2015 Apr 20]. Available from: http://www.menshealth.com/spotlight/diabetes/doc-tors-questions.php

9. Type 2 diabetes: preparing for your appointment [In-ternet]. Mayo Clinic; 2014 Jul 24 [cited 2015 Apr 12]. Available from: http://www.mayoclinic.org/diseases-conditions/type-2-diabetes/basics/prepar-ing-for-your-appointment/con-20031902


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Future TopicsNEXT ISSUE - FALL 2015PREGNANCY & DIABETESWe are currently accepting submissions for the Pregnancy & Diabetes issue of The PLAID Journal to be published in Fall 2015. We invite you to submit your original research highlighting the challenges and successes of pregnancy for people with diabetes. We are looking for articles on relation-ships between pregnancy and all types of diabetes, includ-ing type 1, type 2, and gestational. We aim to share how guidelines, technology, new therapies, better practices, and research help people with diabetes to make informed deci-sions and find success in having children.

We are also looking for audience perspectives on the top-ic of Pregnancy & Diabetes for the Fall 2015 issue of The PLAID Journal. If you are a physician, CDE, midwife, or other healthcare professional who has insights on pregnancy and diabetes, we want to hear from you. If you are a person with diabetes who has found success in having children, and you would like to share your experience, we would also like to hear from you. Email us at [email protected] with your proposal for an audience perspective, and a member of the Editorial Team will follow up.

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