2018 | Volume 39 | Number 6 Diabetes Care A Peer-Reviewed Publication and Education a dietetic practice group of the

ON THE CUTTING EDGE Diabetes Care and Education

ADDRESSING THE MENTAL HEALTH NEEDS AND PSYCHOSOCIAL BARRIERS TO SELF-CARE FOR PEOPLE WITH DIABETES

4 Overview of Common Psychosocial Message from the Theme Editor: Barriers among People With Diabetes Hope S. Warshaw, MMSc, RD, CDE, BC-ADM Owner, Hope Warshaw Associates, LLC 7 The Experience of Diabetes Asheville, NC Stigma and the Role Health Care Providers Play The time is now that health care is raising awareness about: the unique providers, including nutrition emotional and mental health needs of Family Relationships and 9 professionals, educate ourselves about people with diabetes, the unique Dynamics as a Psychosocial and attend, with greater intentionality, distress that managing this demanding Barrier in Diabetes to the emotional wellbeing and mental 24/7 disease can cause, the stigma that 12 Cultural Considerations for health needs of people with diabetes swirls around diabetes, the language Counseling Hispanic/Latino-, and their caregivers. This is a critically health care providers and society-at- Black/African- and Rural important, yet often neglected focus of large use to talk about diabetes and to Americans with Diabetes our work to achieve successful diabetes people with diabetes, the need for self-care and management outcomes. person-centered holistic care, the value 16 Practical Techniques to Address The good news is that we’re seeing of peer support, and more. Drawing Psychosocial Barriers among escalating attention to this topic in attention to these topics, educating People with Diabetes recent publications (1), practice papers nutrition professionals about their (2), position statements (3), standards importance and offering a bevy of 19 Applying Minimally Disruptive of care (4,5) and consensus reports (6). additional reading and resources are Medicine in People with Diabetes You’ll see these publications noted and the key objectives of this OTCE. to Overcome Life and Self-care detailed in the pages ahead. Challenges Work on this OTCE began nine months Some of the increased attention has ago when Janice MacLeod, MA, RD, LDN, 24 The Value of Peer Support for been fueled by greater engagement CDE, FAADE, DCE’s amazing OTCE editor, People with Diabetes and How in dialogue, be it via social media/ asked me if I would be the theme editor. Health Care Providers Can Promote in Practice networking or at conferences and other It didn’t take me long to say yes because meetings, between people with diabetes, this is a topic I’ve engaged with and 28 Polonsky’s Pearls for Practice in their caregivers and health care providers, been passionate about for years. The Diabetes Care diabetes-focused organizations and next step was to assemble a diverse their leaders and the diabetes industry. theme team to map out an OTCE on this 30 Diabetes Associations Recognize Some has been fueled by more mental topic. Goal accomplished! The theme Importance of Mental Health and health providers specializing in diabetes team includes Mark Heyman, PhD, CDE, Champion Provider Training care and more research. Collectively this Monique Richard, MS, RDN, LDN, ON THE CUTTING EDGE Anna Norton, MS, and Toby Smithson, leadership in diabetes stigma and the Diabetes Care and Education MS, RDN, LD, CDE, and represents a importance of using person-centered group of individuals with deep clinical language (7). This article is diabetes and nutrition management intentionally placed second because experience as well as, for some, the we hope OTCE readers will explore lived experience of having diabetes the part they play in perpetuating NewsFLASH and On the Cutting Edge are bi-monthly publications of the Diabetes Care and Education for many years. We jointly identified diabetes stigma and how to begin to (DCE) Dietetic Practice Group of the Academy of topics to cover and contacted capable use less stigmatizing language while Nutrition and Dietetics (the Academy). authors. Each theme team member encouraging others in your practice Print Communications Chair: became point person for one or more settings to do so too. And please raise Kathy Warwick, RD, LD, CDE articles and worked with authors and awareness where and when you can! NewsFLASH Editor: Britt Rotberg, MS, RD, BCADM, CDE peer reviewers to craft this cadre of excellent articles. I thank each of them Without a doubt the relationships a On the Cutting Edge Editor: Janice MacLeod, MA, RD, LDN, CDE, FAADE for their dedication to this OTCE! And person with diabetes has with family

On the Cutting Edge Associate Editor: a big thanks to Janice MacLeod, RD, members and others in their daily Sarah Williams, MS, RD, CDE CDE, and other contributors listed orbit can have significant impact on Content printed in these publications does not imply on page 23. their emotional wellbeing and self- a statement of policy or endorsement by the DCE. The care behaviors. Janis Roszler, LMFT, opinions expressed represent those of the authors and do not reflect official policy of the Academy. As you’ll see, we’ve tapped experts RD, LD/N, CDE, a dietitian and

Mention of product names in this publication does who present content on a breadth of licensed marriage and family not constitute endorsement by DCE or the Academy. topics focused on the mental health therapist, offers readers practical All material appearing in the NewsFLASH and and psychosocial barriers to diabetes pointers to work effectively with On the Cutting Edge is covered by copyright and may be photocopied or otherwise reproduced for care. This OTCE issue appropriately people with diabetes and their noncommercial scientific or educational purposes starts with an “Overview of Common loved ones in her article, “Family only, provided the source is acknowledged. Special arrangements for permission are required from the Psychosocial Barriers among People Relationships and Dynamics as a Print Communications Coordinator for any other with Diabetes.” Mark Heyman, PhD, Psychosocial Barrier in Diabetes Care.” purpose. CDE, psychologist, diabetes educator She importantly encourages us to be Subscriptions are available for people who are ineligible for Academy membership for $35 and person with diabetes, details the aware of our biases as we counsel. (domestic) and $40 (international) by sending most common psychosocial barriers a check to: to diabetes care including: emotional Being aware and respectful of unique Linda Flanagan Vahl DCE Administrative Manager barriers, cognitive barriers, social cultural barriers that can play a Academy of Nutrition and Dietetics barriers and coping barriers. significant role in successful 120 South Riverside Plaza, Suite 2190 Chicago, IL 60606-6995 implementation of diabetes self-care Our next article, “The Experience behaviors. In the article, “Cultural Payable to Academy of Nutrition and Dietetics/DCE noting preferred mailing address. of Diabetes Stigma and the Role Considerations for Counseling

©2019 Diabetes Care and Education Healthcare Providers Play,” is Hispanic/Latino-, Black/African- and Dietetic Practice Group/Academy of Nutrition and Dietetics. authored by Susan Guzman, PhD, Rural Americans with Diabetes,” we All rights reserved. Library of Congress National Serials Data Program a psychologist who specializes in engaged several authors to share their ISSN #1070-5945, issued 7/93. diabetes and is well known for her expertise working with people of

STRATEGIC PRIORITY AREAS MISSION GOAL 1: The public trusts and recognizes DCE members as food, Empowering DCE members to nutrition, and diabetes experts be leaders in food, nutrition, and diabetes care and prevention. GOAL 2: DCE members optimize the health of individuals and populations impacted by diabetes VISION Optimizing the health of people GOAL 3: Membership and prospective members view DCE as vital impacted by diabetes using food, to professional success nutrition, and self-management education. these cultures, all who experience a The role and value of various types of References higher than average incidence of peer support for people with diabetes 1. Gonzalvo JD, De Groot M, Rinker J, diabetes. Raquel Franzini Pereira, MS, and their caregivers has been an area Hilligoss AR, Vu AL. Mental health in RDN, CPPM, CSM, shared her expertise of recent research and interest. CEO of people with diabetes: A needs assessment for the diabetes educator. on counseling individuals of Hispanic/ DiabetesSisters Anna Norton, MS, and AADE in Practice. 2018;6(5):30–33. Latino backgrounds. Robin Nwankwo, I went directly to people with diabetes 2. American Association of Diabetes MPH, RDN, CDE, shared her expertise and caregivers to bring you their Educators. AADE Practice Paper: A on counseling individuals of Black/ insights and perspectives about why practical approach to mental health for the diabetes educator. Published African background and Karen R. Bailey, peer support has made a difference in 2018. https://www.diabeteseducator. MS, RD, LD, CDE, and Elizabeth A. their lives with diabetes. An intent of org/docs/default-source/practice/ Beverly, PhD, shared their expertise this article, “The Value of Peer Support practice-documents/practice-papers/ from rural Ohio. Diana M. Naranjo, PhD, for People with Diabetes and How a-practical-approach-to-mental- health-for-the-diabetes-educator--- a psychologist focused on the Health Care Providers can Promote in final-v2.pdf?sfvrsn=2. Accessed psychosocial needs of people and Practice” is to encourage nutrition November 10, 2018. families with diabetes, authored the professionals to refer people you 3. Young-Hyman D, de Groot M, Hill- Briggs F, Gonzalez JS, Hood K, Peyrot introduction and conclusion. counsel to peer support with references M. Psychosocial care for people with to resources that can help you do this. diabetes: A position statement of As the concluding bookend to his As you’ll read, peer support can be life the American Diabetes Association. first article, Mark Heyman, PhD, CDE, changing. Diabetes Care. 2016;39(12):2126–2140. 4. Beck J, Greenwood DA, Blanton L, authored “Practical Techniques to et al. 2017 National Standards for Address Psychosocial Barriers Among Next in our lineup of articles is Diabetes Self-Management and People with Diabetes.” Recognizing “Polonsky’s Pearls for Practice in Support. Diabetes Care. 2017; that nutrition professionals are not Diabetes Care,” an interview I 40(10):1409–1419. 5. American Diabetes Association. trained psychologists, Heyman offers conducted with William Polonsky, PhD, Lifestyle Management: Standards us a multitude of easy to implement CDE. Bill’s work spans decades and has of Medical Care in Diabetes – 2018. techniques to integrate into our been a force behind bringing attention 2018;41(suppl 1):S38–S50. counseling to address psychosocial to the mental health needs of people 6. Davies MJ, D’Alessio DA, Fradkin J, et al. Management of Hyperglycemia barriers to self-care. with diabetes. This interview integrates in Type 2 Diabetes, 2018. A Consensus research findings, techniques and a Report by the American Diabetes The next article, “Applying Minimally wealth of experiential wisdom. Association (ADA) and the European Disruptive Medicine in People with Association for the Study of Diabetes (EASD). Diabetes Care. 2018; Epub Diabetes to Overcome Life and Self- This OTCE issue wraps up with ahead of print. https://doi. care Challenges,” written by Kasey R. “Diabetes Associations Recognize org/10.2337/dci18–0033. Boehmer, PhD, MPH, Jennifer E. N. Importance of Mental Health and 7. Dickinson JK, Guzman SJ, Maryniuk Fedie, RDN, LD, Susan E. Marschke, Champion Provider Training,” a MD, et al. The Use of Language in Diabetes Care and Education. The RDN, LD and Victor M. Montori, MD, roundup of actions and projects the Diabetes Educator. 2017;43(6): MSc, introduces readers to a relatively American Diabetes Association, JDRF 551–564. new practical counseling approach. and American Association of Diabetes Minimally Disruptive Medicine (MDM) Educators are engaged with to raise has gained attention as an approach the awareness and skill level of health that illustrates the difficulties of care providers targeting emotional implementing self-care that wellbeing and mental health in the emanates from an imbalance of outcomes of people with diabetes. workload and capacity. Using the MDM framework, which is being We hope this OTCE expands your implemented by RDNs Fedie and knowledge, provides references to Marschke in a research study, can access further reading and offers help nutrition professionals reduce resources to improve the care and treatment burden and increase a counsel you offer people with person’s capacity for self-care. diabetes and their caregivers. Enjoy the read!

3 Overview of Common Psychosocial Barriers among People With Diabetes

Mark Heyman, PhD, CDE Founder and Director, Center for Diabetes and Mental Health San Diego, CA

Introduction management may be due to overwhelming (4) and it can feel like Although there have been many inadequate family and/or social it requires constant attention and advancements made in diabetes support, misinformation or vigilance. These ongoing behavioral treatment, many people with inaccurate beliefs about illness demands, combined with worry diabetes (PWD) still have a difficult and treatment, emotional distress/ about disease progression and time achieving optimal glycemic depressive symptoms, or deficits in complications often cause people to management (1). Effective problem-solving or coping skills (3). have significant emotional distress treatments only work if people follow These psychosocial barriers can (5). Diabetes can also increase the their treatment plan and actively be challenging to identify and risk of other psychological engage in diabetes management. oftentimes can be difficult for PWD conditions, including depression The daily tasks involved in managing to overcome. This reality makes it all and anxiety (6). Research shows that diabetes can be difficult, and many the more important for health care one in four PWD have depressive people have various psychosocial providers (HCPs) to become familiar symptoms (7) which include barriers that impact their ability to with these barriers to more depressed mood, lack of energy and manage diabetes. Therefore, it is effectively work with their clients. motivation, difficulty concentrating critical for registered dietitian and feelings of hopelessness and nutritionists (RDNs) who work with Emotional Barriers helplessness. The lifetime PWD to learn about and recognize Emotional challenges can be barriers prevalence of generalized anxiety the common psychosocial barriers to to optimal diabetes management. disorder (GAD) in people with T1D diabetes care so they can help their Emotions can have both a direct or T2D has been reported to be clients identify, and support them in and indirect impact on self-care 19.5% (8). It should be noted that overcoming, these barriers. behaviors. For example, if someone is these statistics do not include the overwhelmed or burned out by the people who experience symptoms This first article provides an overview daily tasks of managing diabetes, of diabetes distress such as anger, of the most common psychosocial or if they are experiencing symptoms frustration and guilt. Review the barriers to diabetes management. that impact their motivation, sidebar “Differentiating between Specifically, it reviews how emotions, concentration or self-worth, these Depression and Diabetes Distress.” thoughts, lack of social support, emotions can have a direct impact problem-solving and coping skills on their diabetes care. In addition, Cognitive Barriers can be barriers to diabetes self-care people may experience emotions Thoughts and beliefs about diabetes, behaviors. This article then presents a that overwhelm them and distract commonly known as cognitive framework that RDNs can use to help them from the task at hand, even if distortions, can also be barriers to clients identify their barriers to that task is diabetes care. diabetes management. Cognitive diabetes care. distortions are defined as errors in It is common for PWD to experience thinking that negatively skew the Psychosocial barriers are defined “as emotions that potentially impact way a person sees themselves, other the psychological and interpersonal their self-management behaviors. people, and the world (9). Although factors that impede diabetes The experience of living with type 1 these patterns of thinking are management or diabetes-related (T1D) or type 2 diabetes (T2D) is common in people both with and quality of life” (2). Suboptimal self- often described as frustrating and without diabetes, they are not 4 accurate and cause negative someone provides something who lack these coping skills often emotions, making behavior change tangible, like a ride to the pharmacy find that this is a barrier to diabetes difficult. Cognitive distortions tend to or babysitting while their friend or care (14). Managing diabetes can take on distinct patterns. It is common family member goes to an HCP require people to make complex for people to see things in ‘all or appointment. decisions that impact their health, nothing’ terms, without recognizing such as what and how much to eat, that there might be a middle ground. Research has shown that there is how much insulin to take and how It is also common for people to only a positive relationship between to prevent and treat hypo- and focus on negative aspects of a supportive relationships and hyperglycemia. These decisions situation and filter out anything diabetes self-management behaviors involve critical thinking and the positive (10). These are just two (12). Conversely, when PWD feel that ability to solve problems that may examples of cognitive distortions. they lack support from others in their not always have a clear-cut answer. lives, it can be a significant barrier to People who lack problem-solving These patterns of thinking are self-care. People who lack support skills or who are not confident in common in PWD and have been often feel isolated, like they are alone their problem-solving ability may shown to be a significant barrier to in dealing with diabetes. They may experience challenges in making diabetes management (11). If a also think that diabetes makes them important decisions. person has an out of range blood different when they just want to fit in glucose and they have the thought, and not be noticed. Others may find It is critical for PWD to find strategies “There’s nothing I can do to get my that the people in their lives from to deal with the stresses of living with blood glucose in range and it’s whom they most need support diabetes. People who do not have always going to be high,” they will sabotage their efforts. These types of effective strategies to do so tend to likely be less motivated to continue unsupportive relationships around avoid thinking about, and actively working to manage their diabetes. diabetes can create an environment managing, their diabetes in an People often also have thoughts that make the sustained behavior attempt to reduce this stress. Lack about what having diabetes means change required to manage diabetes of emotional coping skills makes about them as a person. For example, very difficult. HCPs who work with diabetes management a lot more a person may think, “It’s my fault I PWD can provide emotional support difficult and therefore becomes a have diabetes. I did this to myself and teach them skills to get the barrier to diabetes management. because I don’t have any self-control.” support they need from others. This thought can be a barrier because Other Barriers they may believe that by trying to Coping Barriers PWD encounter other types of manage diabetes, they are setting Coping skills are behaviors that help barriers that impact their ability to themselves up for failure. protect people from being take care of themselves. These overwhelmed by difficult include difficulty with accessing Social Barriers experiences. Effective coping skills healthcare services, paying for PWD need social support to help help people manage the difficulties diabetes-related healthcare costs and manage diabetes. Defined as support that they face in life. There are two navigating insurance coverage (15). that people receive from others, primary types of coping: emotional While these types of barriers are social support can take several coping and problem-focused coping. distinctly different from psychosocial forms, including emotional and Emotional coping skills are strategies barriers, it is helpful to note that instrumental support (12). Emotional that people use to deal with ongoing people who experience psychosocial support occurs when others do stressors that are difficult to change. barriers may also have a harder time things to make us feel cared for Problem-focused coping, also known dealing with these other barriers. For such as providing a listening ear or as problem solving skills, are used example, people with limited social helping with chores. For PWD, this when a person encounters a situation support may find it more difficult to can mean providing empathy and that they can change (13). deal with some of the logistical encouragement or a willingness to challenges of diabetes care, including engage in healthy activities with the Diabetes is a condition that requires transportation and meal planning. person so they do not feel alone. both problem-focused and Also, people who feel overwhelmed, Instrumental support is when emotional coping skills, and people or experience other negative 5 diabetes-related emotions, may lack 9. Beck AT. Thinking and Depression: the motivation needed to find lower- I. Idiosyncratic content and cognitive Differentiating distortions. Archives of General between cost options for their diabetes care. Psychiatry. 1963;9(4):324–333. Depression and 10. Burns DD. The Feeling Good Handbook. Diabetes Distress Summary New York, NY: Plume; 1999. HCPs, including RDNs, who work with 11. Farrell SP, Hains AA, Davies WH, Smith The American Diabetes P, Parton E. The impact of cognitive Association Standards of Care PWD play many important roles in distortions, stress, and adherence on details the importance of diabetes management. In addition to metabolic control in youths with type providing people medical care and 1 diabetes. Journal of Adolescent screening, diagnosis, and Health. 2004;34(6):461–467. education, they also support people management of both major 12. Miller T, Dimatteo MR. Importance depressive disorder (MDD) in identifying and overcoming of family/social support and impact and diabetes distress (DD) (16). psychosocial barriers. Learning to on adherence to diabetic therapy. recognize psychosocial barriers is Diabetes, Metabolic Syndrome and Both conditions are common Obesity: Targets and Therapy. in people with diabetes, have crucial and a task that is critical to 2013;6:421–426. been linked to poor health improving diabetes self-care 13. Pearlin LI, Schooler C. The structure of coping. Journal of Health and Social outcomes (5,17) and need to be behaviors. Behavior. 1978;19(1):2–21. differentiated to treat properly. 14. Grey, M. Coping and Diabetes. MDD is a serious mood disorder References Diabetes Spectrum. 2000;13(3):167. 1. Nam S, Chesla C, Stotts NA, Kroon L, that impacts activities of daily 15. McBrien KA, Naugler C, Ivers N, et al. Janson SL. Barriers to diabetes Barriers to care in patients with living. Symptoms of depression management: patient and provider diabetes and poor glycemic include depressed mood, factors. Diabetes Research and Clinical control—A cross-sectional survey. irritability and feelings of Practice. 2011;93(1):1–9. PloS One. 2017;12(5): e0176135. 2. Glasgow RE, Toobert DJ, Gillette CD. hopelessness and helplessness. 16. Marathe PH, Gao HX, Close KL. Psychosocial Barriers to Diabetes Self- American Diabetes Association Research suggests that a Management and Quality of Life. Standards of Medical Care in combination of genetic, Diabetes Spectrum. 2001;14(1):33–41. Diabetes 2017. Journal of Diabetes. 3. Young-Hyman D, de Groot MD, Hill- biological, environmental, and 2017;9(4):320–324. Briggs F, Gonzalez JS, Hood K, Peyrot 17. Rustad JK, Musselman DL, Nemeroff psychological factors can lead M. Psychosocial Care for People With CB. The relationship of depression and to MDD (18). DDs has been Diabetes: A Position Statement of the diabetes: Patho-physiological and defined as “the unique, often American Diabetes Association. treatment implications. Psychoneuro- Diabetes Care. 2016;39(12):2126–2140. hidden emotional burdens and endocrinology. 2011;36(9):1276–1286. 4. Polonsky W. Understanding and 18. https://www.nimh.nih.gov/health/ worries that are part of the assessing diabetes-specific quality of topics/depression/index.shtml. spectrum of patient experience life. Diabetes Spectrum. 2000;13(1); Accessed October 8, 2018. when managing a severe, 33–41. 19. Vale S. Clinical Depression Versus 5. Fisher L, Hessler DM, Polonsky WH, demanding chronic disease like Distress Among Patients With Type 2 Mullan J. When Is Diabetes Distress Diabetes: Not Just a Question of diabetes” (5). Current thinking Clinically Meaningful?: Establishing Semantics: Response to Fisher et al. suggests that although MDD cut points for the Diabetes Distress Diabetes Care. 2007;30(7):e73–e73. Scale. Diabetes Care. 2012;35(2):259–264. and DD often look similar, DD 20. Polonsky WH, Fisher L, Earles J, et al. 6. de Groot MD, Golden SH, Wagner J. Assessing Psychosocial Distress in is emotional distress that is Psychological conditions in adults Diabetes: Development of the directly related to diabetes, with diabetes. American Psychologist. Diabetes Distress Scale. Diabetes Care. as opposed to MDD which is 2016;71(7):552–562. 2005;28(3):626–631. 7. Anderson RJ, Freedland KE, Clouse RE, more general and is a result 21. Kroenke K, Spitzer RL, Williams JBW. Lustman PJ. The Prevalence of The PHQ-9: validity of a brief of multiple factors (19). To Comorbid Depression in Adults With depression severity measure. Journal differentiate between MDD and Diabetes: A meta-analysis. Diabetes of General Internal Medicine. 2001; DD it can help to administer a Care. 2001;24(6):1069–1078. 16(9):606–613. 8. Li C, Barker L, Ford ES, Zhang X, Strine measure of diabetes distress, TW, Mokdad AH. Diabetes and anxiety such as the Diabetes Distress in US adults: findings from the 2006 Scale (DDS17) (20), and a Behavioral Risk Factor Surveillance System. Diabetic Medicine. 2008;25(7): measure of depression, 878–881. such as the Patient Health Questionnaire-9 (PHQ-9) (21).

6 The Experience of Diabetes Stigma and the Role Health Care Providers Play

Susan Guzman, PhD Co-founder, Behavioral Diabetes Institute San Diego, CA

Introduction tell others that they have diabetes, assessment. PWD report that these Stigmatization occurs when some and as such, they may avoid labels make them feel judged, not socially identifiable characteristic is important self-care behaviors in front understood, and that their efforts go perceived by others as “different” in of others, such as blood glucose unnoticed (7,8). When providing some negative or undesirable way. As monitoring, taking oral medications Diabetes Self-Management a result, people are treated differently or injecting insulin. There may even Education and Support (DSMES) and because of that characteristic (1). be a reluctance to seek diabetes Medical Nutrition Therapy (MNT), the Some stigmatizing social cues for education or treatment for fear of HCP providing these services might People with Diabetes (PWD) are experiencing further shame and say that the PWD “should,” “has to” or observable diabetes technology/ judgment about having diabetes or “needs to” do something to manage devices, blood glucose monitoring, how they are managing it (3). In fact, their diabetes. This language does taking insulin and medications, those who report higher rates of not consider the person’s choices, excess weight, food choices (seen diabetes stigma are the highest needs or barriers, and implies failure as either healthy or unhealthy), risk PWD and have a significantly if the person does not reach their attendance at diabetes treatment/ elevated A1C and/or BMI (5). PWD metabolic goals or does not follow education and events, self-disclosure who could most use the help, the HCP’s directives (8–10). of diabetes, and even medical lab support and compassion of health results (2,3). care professionals (HCPs) are most The public hears that type 2 diabetes likely to report feeling judgement (T2D) is a “preventable disease.” The stigma of diabetes reflects the and blame (5). So what does that say about those idea that PWD have done something who go on to develop it? It is bad or wrong and now they are HCPs May Contribute to understandable how many, from being punished. Studies have shown Diabetes Stigma the onset of diagnosis, feel self- that stigma comes from diabetes The complexity of diabetes and the stigmatization that they are to blame being seen as a self-inflicted disease current standards of care require an for developing prediabetes or resulting from a character flaw, such individualized-treatment approach diabetes, especially if they have long as being weak, fat, lazy, gluttonous, that respects the person’s choices, life struggled with their weight. The or of low socio-economic status, as circumstances, needs and values (6). connection between T2D and excess well as lacking intelligence or The way we talk to PWD about weight presents a particularly burdensome to the health care diabetes doesn’t always reflect this challenging conversation for system (2–5). approach, and instead can add to many HCPs. HCPs may have difficulty the stigma of having diabetes. For discussing the role of weight loss Feeling stigmatized by others is example, describing PWD as being in diabetes management without associated with feelings of shame, “diabetic” does not put the person blaming the person for weight embarrassment, fear, guilt and first; it describes the person by their challenges, oversimplifying weight depression, and can lead to hiding disease. The use of “uncontrolled” or loss, or giving the impression that behaviors and isolation. For example, “noncompliant” is a judgment about developing diabetes was a choice those who feel stigmatized may not the person and not an objective resulting from overeating and “laziness.”

7 HCPs and PWD are often at odds the statistics of negative outcomes is managed, and furthermore, may when it comes to treatment or photos of complications can be even have internalized the stigma of intensification (11). The continued stigmatizing and experienced as diabetes well before diagnosis. At loss of functioning pancreatic beta shaming and blaming. Many people diagnosis they may self-stigmatize cells over time is the natural course with diabetes find these messages blame for developing diabetes and of T2D, therefore treatment and images unhelpful and believe that they are now being intensification over time is nearly discouraging (9). Instead, consider punished for their flaws. Right from always necessary. Many PWD have images and messages that promote the beginning, this may be a the desired goal of either never the hopeful concept that PWD can significant obstacle for the person’s starting to take or getting off of their live a healthy life with diabetes. engagement with diabetes glucose-lowering and other diabetes- management and with DSMES and related medication; an understandable Be aware that language is powerful. MNT. HCPs can use each interaction wish as nobody wants to be on any What you say and how you say it can as an educational opportunity to or additional medication. HCPs may define the experience of diabetes combat these misconceptions and offer the incentive of possible (10,12). The AADE/ADA guidance on help create an experience of diabetes medication reduction or elimination the use of language in diabetes care that is inclusive, fact-based and non- in an effort to motivate people for provides four guiding principles: fact- judgmental. behavior change. However, this based and neutral; free from stigma; incentive is neither realistic nor strengths-based and empowering; Diabetes is not a choice; safe for most PWD and sends the and collaborative. Examples for how a person manages message to PWD that the goal in suggested language that is non- diabetes management is to be on stigmatizing includes replacing “bad/ it is. less medication and needing to take good” with “safe/unsafe,” referring to medication means that they were “people with diabetes” instead of References unsuccessful in making changes (11). “diabetics,” and describing the 1. Goffman E. Stigma: Notes on the This is a stigmatizing message in that objective behaviors such as “takes Management of Spoiled Identity. Englewood Cliffs, NJ: Prentice-Hall; “needing medication means you medication half of time” instead of 1963. have failed and are to be punished.” “noncompliant” or “nonadherent” (10). 2. Browne JL, Ventura A, Mosely K, Speight J. ‘I call it the blame and Suggestions to HCPs The ongoing challenges PWD face in shame disease’: A qualitative study about perceptions of social stigma for Combatting Diabetes making changes in eating behavior surrounding type 2 diabetes. BMJ Stigma and physical activity lead many to Open. 2013;3(11):1–10. doi: 10.1136/ Be mindful of the messages you feel like they are failing at diabetes bmjopen-2013-003384. 3. Schabert J, Browne JL, Mosely K, send, both directly and indirectly. management and they experience Speight J. Social Stigma in Diabetes: A To combat stigma, create an high levels of distress about it (13). Framework to Understand a Growing environment and clinical experience HCPs can help PWD learn how to Problem for an Increasing Epidemic. that says, “Welcome in. Diabetes is face daily challenges with self- Patient. 2013;6(1):1–10. 4. Browne JL, Ventura A, Mosely K, compassion, realistic expectations not your fault and now that you have Speight J. ‘I’m not a druggie, I’m just a it, there is a lot you can do to manage and achievable goals. diabetic’: A qualitative study of stigma it to live a long and healthy life. Let’s from the perspective of adults with work together to make a plan that Summary type 1 diabetes. BMJ Open. 2014; 4(7):e005625. doi: 10.1136/ works for you.” A non-stigmatizing HCPs have the unique opportunity to bmjopen-2014-005625. environment is welcoming, challenge and dispel myths and 5. Liu NF, Brown AS, Younge MF, Guzman supportive, respectful and stereotypes that contribute to the SJ, Close KL, Wood R. Stigma in People with Type 1 or Type 2 Diabetes. Clinical emotionally safe. stigma of diabetes in the general Diabetes. 2017;35(1):27–34. doi: public and in PWD. Many people 10.2337/cd16-0020. Consider the physical space of your will start their life with diabetes 6. Standards of Medical Care in office. Is it welcoming? Lists of with many misbeliefs and outdated Diabetes—2018. Diabetes Care. 201841(suppl 1):S1–S2. doi: 10.2337/ symptoms of diabetes, posters of concepts about diabetes and how it dc18-Sint01.

8 7. Tak-Ying Shiu A, Kwan JJ, Wong RY. Social Stigma as Barrier to Diabetes Family Relationships and Dynamics as a Self-Management: Implications for Multi-Level Interventions. Journal of Psychosocial Barrier in Diabetes Clinical Nursing. 2003;12(1):149–150. 8. Dickinson JK. Commentary: The effect Janis Roszler, LMFT, RD, LD/N, CDE, FAND of words on health and diabetes. Manager, Diabetes Directions, LLC Diabetes Spectrum. 2017;30(1):11–16. Miami, FL doi: 10.2337/ds15-0054. 9. Dickinson, JK. The experience of diabetes-related language in diabetes care. Diabetes Spectrum. 2018;31(1): 58–64. doi: 10.2337/ds16-0082. 10. Dickinson JK, Guzman SG, Maryniuk MD, et al. The Use of Language in Diabetes Care and Education. Diabetes Introduction programs taught goal-setting and Care. 2017;40(12):1790–1799. doi: The relationships people with diabetes problem solving and helped relatives 10.2337/dci17-0041. play supportive roles in their 11. Grant RW, Pabon-Nau L, Ross KM, (PWD) have with their family members Youatt EJ, Pandiscio JC, Park ER. can affect their ability to manage relative’s self-management efforts. Diabetes Oral Medication Initiation diabetes-related tasks and self-care The reviewers concluded that family and Intensification: Patient views behaviors. Supportive relatives can help involvement had a “...positive impact compared with current treatment on healthy diet, increased perceived guidelines. Diabetes Educ. 2011;37(1): loved ones achieve improved glucose 78–84. doi: 10.1177/0145721710 results, make healthier lifestyle support, higher self-efficacy, 388427. decisions, and feel more confident improved psychological well-being 12. Polonsky WH, Capehorn M, Belton A, and better glycemic control” (3). et al. Physician–patient communication about their ability to live with diabetes. at diagnosis of type 2 diabetes and its A lack of support can make it more links to patient outcomes: New results challenging to achieve diabetes goals. A 2017 paper reviewed five studies from the global IntroDia® study. This article presents the role and impact that examined the effects family Diabetes Research and Clinical Practice. support had on individuals with 2017;127:265–274. doi: 10.1016/j. family relationships and dynamics can diabres.2017.03.016. have, either positive or negative, on T2D (4). Many family members 13. Fisher L, Hessler D, Glasgow RE, et al. PWD and their ability to manage self- demonstrated non-supportive REDEEM: a pragmatic trial to reduce care tasks. The article also offers behaviors, such as preparing foods diabetes distress. Diabetes Care. their loved one with diabetes 2013;36(9):2551–2558. doi: 10.2337/ Registered Dietitians Nutritionists dc12-2493. (RDNs) steps to more effectively deal couldn’t eat, ignoring his or her meal with family relationships and dynamics timing wishes, acting annoyed, and/ as they relate to diabetes self-care and or refusing to help their relative deal education. with diabetes challenges (4). Some also questioned “the need for Literature Review prescribed medications” to which Individuals who feel supported PWD responded by feeling “annoyed, by their families are three times aggravated or angry” (4). more likely to follow medical recommendations than those who A 2012 study of 106 adults with lack family support (1,2). A 2017 T2D showed that PWD who were review of 23 studies of educational unsupported by family members programs that included a teaching were less likely to take their component for families of people medication as directed (5). In another with poorly managed type 2 diabetes study, individuals struggled with self- (T2D) was conducted in Western care tasks when relatives prepared countries and in one Asian country food they preferred not to eat (6). (3). Approximately 40% of the studies implemented individual counseling One other research study as the educational method, and demonstrated that the attitude approximately 60% used both diabetes educators have toward individual and group sessions. All working with families also impacts 9 how involved and supportive family • POSITIVELY REFRAME critical informed adolescent may not follow members may become. A survey of comments as signs that they through with important diabetes 225 Certified Diabetes Educators really care. self-care behaviors (10). To keep throughout the 50 U.S. states revealed maturing children safe, the model a positive association between the If family members criticize you, don’t focuses on behavior change before educator’s “personal values of family take it personally. Family members attitude change, which differs from support” and the frequency in which may be struggling with medical and motivational interviewing, which family members were invited to administrative issues that they encourages attitude change as a educational sessions (7). choose to take out on you. Also, precursor to new behaviors (11). This remember that not all families is done because, “...no one has the Steps to Effectively function as your family does. The luxury of being able to wait years Deal with Family behavior you see as domineering for children and parents affected by Relationships and and intrusive may be viewed by the [diabetes] to have an ‘A-ha!’ experience Dynamics PWD as loving and caring. about the importance of maintaining RDNs can take the following steps optimal metabolic control” (10). to help manage issues that arise Encourage PWD to tell their loved between PWD and their loved ones: ones what they need. Remind them to Try the following with families and be specific so everyone understands their adolescents with diabetes (10): Before You Meet with what is expected. For example, they • Identify the role each family Family Members may ask a sister to drive them to the member has in their loved one’s Many PWD bring family members to grocery store or want their spouse to diabetes care. their counseling sessions. Prepare inspect their feet. • Invite parents and children to list yourself for possible negative diabetes-related tasks the child comments by using the STOP, DROP Should We Work can do to assume an increased and ROLL technique (8) to help you Differently with Men level of responsibility. feel more relaxed before you enter and Women? • Help them set consequences for the room: According to Lise Eliot, researcher at tasks that are not completed. STOP – Stop what you are doing the Department of Neuroscience, • Help the family create a and breathe. Chicago Medical School, there are communication plan that DROP – Drop any negative differences between male and female eliminates excessive monitoring. thoughts and adopt a more brains but such effects on learning For example, have the child mark compassionate perspective. For and behavior are minimal and have completed diabetes self-care example, Uncle Jerry may seem been distorted by the media (9). tasks in a journal that is accessible difficult, but he still came. He must Structurally, male brains are about to their parents. care about his loved one. 11% larger than female brains and • Encourage parents to hold a have a “slightly higher proportion of 5-10-minute weekly family meeting ROLL – Roll forward with your new white matter,” while “...female brains to review the progress of the attitude. have a larger proportion of gray diabetes management plan. If the matter in most cortical areas,” but in week was successful, everyone can In the room, use the LEAP approach actuality, that means very little (9). offer congratulations. If a task wasn’t (8) to give everyone an opportunity So, treat everyone you see as having completed, they should discuss to be heard. Let them know that you unique wants and needs. ways to manage it better. Parents appreciate how challenging diabetes should implement the consequence is and give them a chance to share Adolescents and Parents for not doing the task. their thoughts and feelings. Adolescents are usually encouraged • If possible, schedule follow-up • LISTEN to comments family to assume a significant role in their appointments and phone calls to members make. diabetes care. The Family Approach monitor how well the family • EMPATHIZE with them; it’s very to Diabetes Management (FADM) manages the new plan. difficult to watch a loved one (10) is a tool that helps achieve this struggle with medical issues. goal. FADM was developed with the • AFFIRM that many families feel understanding that even the most the same way. 10 Managing Your References Personal Bias Practical Pointers 1. Pereira M, Berg-Cross L, Almeida P, Machado J. Impact of family As mentioned earlier, RDNs who Steps RDN can implement with environment and support on enjoy a positive relationship with families: adherence, metabolic control, and their own families are more likely to quality of life in adolescents with • Encourage the family invite families of PWD to educational diabetes. Int J Behav Med. 2008; member with diabetes to 15(3):187–193. sessions (7). If you don’t have a be specific when asking for 2. DiMatteo MR. Social support and positive family history, try to manage patient adherence to medical help. Encourage them not your own negative feelings about treatment: a meta-analysis. Health to assume their loved ones family involvement. Recognize the Psychol. 2004;23(2):207–218. know their needs. 3. Pamungkas RA, Chamroonsawasdi K, value of family support as a tool in Vatanasomboon P. A systematic your educational toolbox. Don’t insert • Tell loved ones not to take it review: family support integrated with your personal feelings into personally if their relatives diabetes self-management among uncontrolled type II diabetes mellitus counseling sessions by using negative with diabetes decline their patients. Behav Sci (Basel). body language. For example, if a offer of assistance. Some 2017;7(3):62. family member makes a negative prefer to be independent. 4. Bennich BB, Røder ME, Overgaard D, comment, don’t roll your eyes. If you et al. Supportive and non-supportive • Recommend reliable interactions in families with a type 2 don’t understand a certain behavior, articles, websites and books diabetes patient: an integrative ask for clarification. This can be to help family members review. Diabetology & Metabolic Syndrome. 2017;9:57. helpful if you are working with learn about diabetes. individuals from a different religious, 5. Mayberry LS, Egede LE, Wagner JA, • During a session, if a question Osborn CY. Stress, depression and cultural or social background. medication nonadherence in diabetes: requires additional time, test of the exacerbating and buffering If you struggle with a family’s suggest family members effects of family support. Journal of Behavioral Medicine. 2015;38(2): behavior, ask other health care join their loved one at an 363–371. additional appointment to providers you work with to share 6. Gallant MP, Spitze GD, Prohaska TR. how they manage these situations. discuss the issue in greater Help or hindrance? How family and You can also reach out to a therapist detail. They can also attend a friends influence chronic illness self- diabetes class, read a book or management among older adults to help you understand their family (report). Res Aging. 2007;29(5): dynamics better. The DCE electronic view appropriate videos. 375–409. mailing list and other forms of • Recommend a family 7. Denham SA, Ware LJ, Raffle H, Leach K. colleague support can be helpful. Family Inclusion in Diabetes education: therapist to relatives who A Nationwide Survey of Diabetes don’t emotionally support Educators. Diabetes Educ. 2011;37(4): Summary their loved one with 528–535. 8. Roszler J, Rapaport WS. Approaches to Working with PWD and their families diabetes. The therapist may Behavior. Alexandria, VA: American can be very challenging, but is be able to help them better Diabetes Association; 2015. critically important as most manage their feelings. 9. Eliot L. The trouble with sex individuals thrive when loved ones differences. Neuron. 2011;72(6): • Encourage individuals who support their diabetes self-care 895–898. lack family support to share 10. Solowiejczyk, J. The family approach efforts. RDNs can manage their own their frustrations with a to diabetes management: theory into feelings prior to meeting with practice toward the development of a trained mental health challenging families with the STOP, new paradigm. Diabetes Spectrum. provider. DROP and ROLL technique. They can 2004;7(1): 31–36. 11. Miller WR, Rollnick S. Talking oneself also employ the LEAP approach into change: Motivational during family sessions to help all interviewing, stages of change, and attendees feel respected and heard. therapeutic process. Journal of Cognitive Psychotherapy. 2004; As young PWD enter adolescence, 18(4):299–308. RDNs can help guide their families with FADM.

11 Cultural Considerations for Counseling Hispanic/Latino-, Black/African- and Rural Americans with Diabetes

Diana M. Naranjo, PhD Clinical Associate Professor, Division of Pediatric Endocrinology & Behavioral Psychiatry and Behavioral Sciences Stanford School of Medicine Palo Alto, CA

Introduction skills, such as understanding • Fear and anger regarding diabetes It is important for health care carbohydrate counting and • Belief that diabetes management providers (HCPs) to understand cultural generating healthful eating plans is complex, difficult and out of barriers that can make diabetes self- that are acceptable and concordant one’s control management challenging. This article with cultural norms. • Trust in relatives and friends as it focuses on how registered dietitian relates to diabetes management nutritionists (RDNs) can incorporate Hispanic/Latino knowledge about cultural barriers in Americans Common beliefs about life, three at-risk populations: Hispanic/ Raquel Franzini Pereira, MS, RDN, health and diabetes Latino Americans (Latino), non- CPPM, CSM Latinos traditionally value family over Hispanic black Americans (African Senior Project Manager individual or community needs (14), Americans), and rural Americans. Simple Concepts Consulting therefore families play an essential Redmond, WA role in diabetes management (16). Latinos are the largest ethnic Family structure and beliefs can minority in the United States. People Common cultural barriers influence the self-management of of Hispanic origin make up 17.8% of Latinos vary not only genetically and the person with diabetes (PWD) both the U.S. population (1) and have a racially (10), but also culturally. This positively and negatively depending 16.4% age-adjusted prevalence variation includes whether a person’s on the family’s resources and level of of diagnosed and undiagnosed origins are Latin or European, their diabetes knowledge (17). Faith can diabetes among adults (2). African level of education, social economic also play a central role in coping and Americans make up 13% of the U.S. status and acculturation in the U.S. self-management. This can take the population (1) and have a 17.7% age- Therefore, cultural barriers to form of resilient coping by providing adjusted prevalence of diagnosed diabetes can vary. Common barriers strength, comfort, and a rubric to and undiagnosed diabetes among include (5,11–15): make sense of negative afflictions, adults (2). Americans living in rural • Cultural stigma to diabetes which is linked to positive health areas make up an estimated 19.3% of • Negative interactions with HCPs outcomes and decreased incidence the nation’s population (3) and have • Stress around immigration and of metabolic syndrome (18). a 12-15% rate of diabetes (4). All economic status However, faith can also take the form three of these groups are disparately • Language barrier regardless of of passive coping leading to fatalism, affected by diabetes (5–7) and their level of English fluency resulting in inaction or a resigned cultural barriers and access to care • Lack of exposure to healthy acceptance of diabetes (19). This contribute to worse health outcomes lifestyle habits coupled with exposure to and poorer self-management than • Lack of social support, proper generations of family members non-Hispanic urban whites (6,8,9). resources, health and numeracy experiencing poor diabetes health skills outcomes can equate the diagnosis Understanding cultural and • Belief that traditional foods can’t of diabetes to a “death sentence” (15). geographical barriers can help RDNs be incorporated into healthy support people in these cultural menus Due to their social connectedness groups to develop successful, • Incorporation of traditional and and values, Latinos may benefit from diabetes-focused self-management alternative medicine using shared medical appointments

12 (SMAs). These group visits can caregivers of intergenerational giving hope and counsel against increase understanding and family members. Food-focused family worry. However, in addition to faith community via social support and be gatherings and putting other family being a source of support, it may also a feasible means to improve care and member’s needs before their own mask awareness that diabetes is a outcomes (20). However, HCPs must can pose challenges to managing threat (24). Harnessing the power of be mindful of the potential for the diabetes (27). Taking insulin is a faith alongside the message that God dissemination and exchange of disruptive change of identity and is ultimately responsible for health misconceptions by participants. when key figures in the family and will never leave the believer can develop diabetes, it can lead to a sway choices to improve their quality Black/African Americans perceived loss of the caregiver who of life (30). Robin Nwankwo, MPH, RDN, CDE now needs care (25). Diabetes can Research Associate, pose a threat to both emotional and Rural Americans University of Michigan physical well-being, indicating a loss Karen R. Bailey, MS, RD, LD, CDE, CPT Ann Arbor, MI of control with fatalistic expressions Ohio University Diabetes Institute such as “It must be my time…” Athens, OH Common cultural barriers becoming an acceptable path to Black/African Americans are diverse coping amidst the challenges of poor Elizabeth A. Beverly, PhD in regards to geography, levels of health (24,25). Assistant Professor of Family Medicine education, social economic status Ohio University Heritage College of and ancestral country of origin Food is central to identity and is a Osteopathic Medicine (forcible immigration through slavery unifying force in the family. Food Athens, OH or more recent immigration through preparation and seasoning expresses choice). Therefore, cultural barriers love; whereas, dieting or restricting Barriers to Accessing Health Care vary, but common barriers include intake is a rejection of love. In a in Rural Areas (21–32): focus group (28), African American Rural Americans are culturally diverse • Experience with individual and participants complained that and spread broadly across the systemic-level racism leading to nutrition recommendations from country. Twenty percent of America’s distrust of and negative their medical providers were unclear population live in rural areas yet only interactions with health care staff and lacked context (33). In addition, 10% of physicians practice in rural • Differing cultural priorities from heavier weights are accepted as areas. Rural Americans are less likely HCPs common and normative, especially to have timely access to emergency • Poverty and all comorbid among women. In one study, women medical services, hospitals and associations, such as: lacking equated losing weight with a loss of clinics. The most common barriers access to health care, prohibitive identity (26). impacting diabetes management are cost of prescribed medications, listed below (34): and food and housing insecurity Health beliefs can also make • Lack of public transportation, • Traditionally unhealthy family habits managing diabetes challenging. unpaved roads, and extreme • Lack of social support For example, many Black/African weather conditions • Fear and anger regarding Americans believe diabetes is only • Lack of quality health care diabetes present when blood glucose levels • Lack of diabetes specialists in the • Spirituality, religion, fatalism and are high, and therefore medications region traditional beliefs dating back to are only needed episodically. In • Financial constraints slavery addition, some believe that diabetes • Lack of comprehensive insurance • Food preferences and body is not controllable (29) and that coverage norms such as heavier body insulin is optional and can be • Lack of access to fresh food weights accepted as common omitted without harm, while others • Lack of adequate housing • Low health literacy and numeracy believe the need for insulin confirms • Social isolation a diabetes diagnosis (25). Common beliefs about life, Population Specific Interventions health and diabetes Spirituality provides strength, stress Travel to medical visits can be Black/African Americans often release, reminds one to stay difficult. HCPs need to be aware of have large extended families with grounded in their belief of self while available resources so they can help

13 coordinate transportation. For Tips and Strategies for Counseling all People example, Medicaid will cover the cost with Diabetes of transportation for eligible Diana M. Naranjo, PhD individuals to and from a physician’s office, hospital, or another medical Motivational Interviewing (MI) lends itself well to working with people of varied office for Medicaid-approved care cultural backgrounds because it applies person-focused strategies and active (35). However, states have different listening. In addition, the strategies listed below can be useful when rules about when transportation is considering cultural values and norms (6,11–14,39,40): necessary.

Successful rural Diabetes Self- Useful strategies when considering cultural Management Education and values and norms: Support (DSMES) interventions have • Gauge health literacy, numeracy and English fluency incorporated social support (36). • Use verbal and nonverbal communication Use of virtual delivery of care is a • When appropriate have bicultural providers, skilled community health promising model for delivering workers, or those fluent in the PWD’s language deliver education DSMES. Interventions have observed • Explore subtle cultural differences among different groups to adjust improvements in glycemic control counseling approach compared to usual care (37). • Involve supportive family members upon treatment initiation However, HCPs need to consider the • Use strategies that increase the PWD’s sense of empowerment and potential for limited or complete lack self-efficacy of internet access. • Focus on decreasing depressive/distress symptoms in the PWD, if present • Ask about the use of alternative medicine and respect its role as long Social support positively influences as it does not conflict with traditional medical care the performance of diabetes self-care • Address diabetes as a manageable disease common among a variety and glycemic control (38). Involving of populations family members, especially spouses • Adapt educational sessions and materials to avoid literal translation of and partners, in self-care is content and saliency in different cultures important. These tips can help the person who does not have family • Create disease management and behavioral intervention sessions for nearby build a social support delivery in social environments such as cooking demonstrations/ network: classes, school/community events and/or at work settings instead of • Offer group DSMES in traditional health care settings • Offer in-person diabetes support • Assess the role of faith/spirituality in understanding disease identity, groups fatalism and coping • Recommend an online peer support group • Encourage outreach to friends Summary References Hispanic/Latino-, Black/African- 1. U.S. Census Bureau. Quick Facts. when they need extra support or https://www.census.gov/quickfacts/ advice; schedule regular get- and rural Americans are all fact/table/US/PST045217#viewtop. togethers, video or phone calls, disproportionately burdened with Accessed October 10, 2018. diabetes and negative health outcomes 2. Centers for Disease Control and and texts Prevention, US Department of Health • Encourage joining a local club, associated with the disease for a variety and Human Services. National activity, religious or spiritual of reasons including cultural barriers Diabetes Statistics Report, 2017. (6–8). The RDN’s understanding of Published 2017. https://www.cdc.gov/ group, and/or volunteer diabetes/pdfs/data/statistics/national- organization these cultural barriers can enhance diabetes-statistics-report.pdf. communication, person-centered Accessed October 10, 2018. approaches, and improve the quality of 3. Ratcliffe M, Burd C, Holder K, Fields A. Defining Rural at the U.S. Census care these groups receive. All of these Bureau. Washington, D.C.: United groups of Americans would benefit States Census Bureau; 2016. from expanded access to health care, 4. Towne Jr S, Bolin J, Ferdinand A, et al. Diabetes and forgone medical more culturally sensitive HCPs and care due to cost in the U.S. (2011- additional research studies targeting 2015): Individual-level and place- how to overcome cultural barriers (32). based disparities. Southwest Rural 14 Health Research Center Policy Brief. 17. Carbone ET, Rosal MC, Torres MI, Goins 29. Mann DM, Ponieman D, Leventhal H, August 2017. KV, Bermudez OI. Diabetes self- Halm EA. Predictors of adherence to 5. Moreira T, Hernandez DC, Scott CW, management: perspectives of Latino diabetes medications: the role of Murillo R, Vaughan EM, Johnston CA. patients and their health care disease and medication beliefs. Susto, Coraje, y Fatalismo: Cultural- providers. Patient Educ Couns. Journal of Behavioral Medicine. 2009; Bound Beliefs and the Treatment of 2007;66(2):202–210. 32(3):278–284. Diabetes Among Socioeconomically 18. Centers for Disease Control. Cultural 30. Johnson KS. “You just do your part. Disadvantaged Hispanics. Am J Insights: Communicating with God will do the rest.”: spirituality and Lifestyle Med. 2018;12(1):30–33. Hispanics/Latinos. https://www.cdc. culture in the medical encounter. 6. James CV, Moonesinghe R, Wilson- gov/healthcommunication/pdf/ Southern Medical Journal. 2006; Frederick SM, Hall JE, Penman-Aguilar audience/audienceinsight_ 99(10):1163. A, Bouye K. Racial/Ethnic Health culturalinsights.pdf. Accessed 31. Shelton RC, Goldman RE, Emmons Disparities Among Rural Adults - November 15, 2018. KM, Sorenson G, Allen JD. An United States, 2012-2015. Morbidity 19. Allshouse AA, Santoro N, Green R, investigation into the social context of and Mortality Weekly Report Surveillance et al. Religiosity and faith in relation low-income, urban Black and Latina Summaries. 2017;66(23):1–9. to time to metabolic syndrome for women: implications for adherence 7. Matthews KA, Croft JB, Liu Y, et al. Hispanic women in a multiethnic to recommended health behaviors. Health-Related Behaviors by Urban- cohort of women-Findings from the Health Education & Behavior. Rural County Classification - United Study of Women’s Health Across the 2011;38(5):471–481. States, 2013. Morbidity and Mortality Nation (SWAN). Maturitas. 2018; 32. Velasco-Mondragon E, Jimenez A, Weekly Report Surveillance Summaries. 112:18–23. Palladino-Davis AG, Davis D and 2017;66(5):1–8. 20. Menon K, Mousa A, de Courten MP, Escamilla-Cejudo JA. Hispanic health 8. Hu J, Amirehsani K, Wallace DC, Letvak Soldatos G, Egger G, de Courten B. in the USA: a scoping review of the S. Perceptions of Barriers in Managing Shared Medical Appointments May Be literature. Public Health Reviews Diabetes. Perspectives of Hispanic Effective for Improving Clinical and (2016) 37:31. Immigrant Patients and Family Behavioral Outcomes in Type 2 33. Lynch CS, Chang JC, Ford AF, Ibrahim Members. Diabetes Education. Diabetes: A Narrative Review. Front SA. Obese African American women’s 2013;39(4):494–503. Endocrinol (Lausanne). 20174;8:263. perspectives on weight loss and 9. Centers for Disease Control and 21. Anderson RM, Herman WH, Davis JM, bariatric surgery. Soc of Gen Int Med. Prevention. National Diabetes Freedman RP, Funnell MM, Neighbors 2007;22:908–914. Statistics Report, 2014. Atlanta, GA: HW. Barriers to Improving Diabetes 34. Douthit N, Kiv S, Dwolatzky T, Biswas US Department of Health and Human Care for Blacks. Diabetes Care. 1991; S. Exposing some important barriers Services; 2014. 14(7):605–609. to health care access in the rural USA. 10. Belbin GM, Nieves-Colón MA, Kenny 22. Tseng CW, Tierney EF, Gerzoff RB, et al. Public Health. 2015;129(6):611–620. EE, Moreno-Estrada A, Gignoux CR. Race/Ethnicity and economic 35. Assurance of Transportation, 42 C.F.R. Genetic diversity in populations differences in cost-related medication § 431.53. 74 FR 31195, June 30, 2009. across Latin America: implications underuse among insured adults with 36. Bray P, Thompson D, Wynn JD, for population and medical genetic diabetes the Translating Research Into Cummings DM, Whetstone L. studies. Curr Opin Genet Dev. 2018; Action for Diabetes study. Diabetes Confronting disparities in diabetes 17;53:98–104. Care. 2008;31(2):261–266. care: the clinical effectiveness of 11. McCloskey J, Flenniken D. Overcoming 23. Ferguson MO, Long JA, Zhu J, et al. Low redesigning care management for cultural barriers to diabetes control: a health literacy predicts misperceptions minority patients in rural primary care qualitative study of southwestern of diabetes control in patients with practices. J Rural Health. 2005;21(4): New Mexico Hispanics. J Cult Divers. persistently elevated A1C. Diabetes 317–321. 2010;17(3):110–115. Educator. 2015;41(3):309–319. 37. Davis RM, Hitch AD, Salaam MM, 12. Salimbene S. . What Language Does Your 24. Scollan-Kollopoulos M, Rapp KJ 3rd, Herman WH, Zimmer-Galler IE, Mayer- Patient Hurt In? A Practical Guide to Bleich D. Afrocentric cultural values Davis EJ. TeleHealth improves diabetes Culturally Competent Patient Care. and beliefs. Movement beyond the self-management in an underserved Amherst, MA: Diversity Resources; 2000. race and ethnicity proxy to understand community: diabetes TeleCare. Diabetes 13. Smith A. Ethnomed: Mexican cultural views of diabetes. Diabetes Educator. Care. 2010;33(8):1712–1717. profile. Published 2000. http:// 2012;38(4):488–498. 38. Stopford R, Winkley K, Ismail K. Social ethnomed.org/culture/hispanic- 25. Nam S, Chesla C, Stotts NA, Kroon L, support and glycemic control in type latino/mexican-cultural-profile/ Janson SL. Barriers to diabetes 2 diabetes: a systematic review of ?searchterm=Mexican%20cultural management: patient and provider observational studies. Patient %20profile.Accessed November 2, 2018. factors. Diabetes Research and Clinical Education and Counseling. 2013; 14. Guarnero P. Mexicans. In: Lipson J & Practice. 2011;93(1):1–9. 93(3):549–558. Dibble S, eds. Cultural and Clinical 26. Perfetti AR. Fate and the clinic: a 39. Oh H, Ell K. Associations Between Care. San Francisco, CA: UCSF Nursing multidisciplinary consideration of Changes in Depressive Symptoms and Press; 2005:330-342. fatalism in health behaviour. Medical Social Support and Diabetes 15. Smith-Miller CA, Berry DC, Miller CT. Humanities. 2018;44(1):59–62. Management Among Low-Income, Diabetes affects everything: Type 2 27. Vijan S, Stuart NS, Fitzgerald JT, Predominantly Hispanic Patients in diabetes self-management among et al. Barriers to following dietary Patient-Centered Care. Diabetes Care. Spanish-speaking Hispanic immigrants. recommendations in type 2 diabetes. 2018;41(6):1149–1156. Res Nurs Health. 2017;40(6):541–554. Diab Med. 2005;22(1):32–38. 40. Fitzgerald JT, Gruppen LD, Anderson 16. Mora N, Golden SH. Understanding 28. Cameron NO, Muldrow AF, Stefani W. RM, et al. The influence of treatment Cultural Influences on Dietary Habits The weight of things: understanding modality and ethnicity on attitudes in in Asian, Middle Eastern, and Latino African American women’s type 2 diabetes. Diabetes Care. 2000; Patients with Type 2 Diabetes: A perceptions of health, body image 23(3):313–318. Review of Current Literature and and attractiveness. Qual Health Res. Future Directions. Curr Diab Rep. 2018;28(8):1242–1254. 2017;23;17(12):126. 15 Practical Techniques to Address Psychosocial Barriers among People with Diabetes

Mark Heyman, PhD, CDE Founder and Director, Center for Diabetes and Mental Health San Diego, CA

Introduction Self-Management Education and diabetes management and help This article provides Registered Support encourages clinicians to use them develop a plan to overcome Dietitian Nutritionists (RDNs) with a personalized, person-centered this challenge. This will equip the simple techniques to address approach in their work, which includes PWD to anticipate the challenge, psychosocial barriers among people identifying and addressing psychosocial think through their response, and with diabetes. It also provides ways barriers to diabetes care (3). get feedback in a safe, non- to use aspects of Diabetes Self- threatening environment. Management Education and Use of the AADE7 Self-Care Behaviors Support (DSMES), with a focus on in problem solving and healthy Healthy Coping: Living with diabetes problem solving and healthy coping, coping within counseling are can feel overwhelming. Therefore it is cognitive behavioral strategies and particularly helpful with PWD important for PWD to develop ways acceptance, with PWD who are experiencing psychosocial barriers. to cope with stress that support their experiencing psychosocial barriers diabetes management (5). to managing their diabetes. Problem Solving: Diabetes is a self- managed condition that requires RDNs can work with PWD to help Research shows that positive PWD to make decisions about their them find healthy coping strategies emotional health not only improves health constantly. PWD have to cope in the following ways: PWD’s quality of life, but it can also with the unexpected and ever- • Deep breathing: Breathing can help them increase self-care behavior changing requirements of the help reduce stress, relieve tension and improve health outcomes (2). condition and often need to make and can have a calming effect RDNs have a unique opportunity to adjustments in their management via when a person is feeling help PWD address psychosocial rapid decision making. Proficiency overwhelmed. Taking long, slow barriers to diabetes care to have a with problem solving skills is a critical deep breaths can slow the heart direct impact on PWD’s emotional aspect of DSMES (4). rate, relax the muscles and slow and physical health. Implementing thoughts (6). RDNs can use the techniques presented here can serve RDNs can support PWD in developing following instructions to teach as a guide to their use. problem solving skills in the deep breathing as a healthy following ways: coping strategy: Diabetes Self- • Use past experiences: Talk about o Sit down in a comfortable, Management a challenge that the PWD has quiet place Education and Support experienced in the past that they o Take a deep breath in through DSMES is a critical element of care do not think they handled well. your nose for all PWD (3). DSMES should be Ask questions to help them o Hold the breath for about comprehensive and personalized, understand what got in their way, 4 seconds providing information about and what they would have done o Exhale slowly through your diabetes and how it is managed differently if given the mouth while addressing the challenges that opportunity. o Repeat 5-6 times make it difficult for the individual to • Plan for the future: Identify a • Get active: Another healthy engage in diabetes self-care behaviors. challenge that the PWD may coping strategy RDNs can suggest The National Standards for Diabetes experience in the future with their is physical activity, like taking a 16 walk. Physical activity can give respond in a more effective manner not completely realistic, they can PWD the chance to clear their (8). CBT has been shown to be work with them to come up with head, and allows for the release of effective in helping PWD who are a more realistic thought. For chemicals that can reduce stress. experiencing difficult emotions example, if a person says, “I am Being active can also make it related to diabetes (9). Although completely alone in my diabetes,” easier for PWD to keep their RDNs are not trained in conducting RDNs can help them reframe this blood glucose levels in their psychotherapy, there are several thought to, “I have some people, target range (5) as well as effective cognitive behavioral including my dietitian, who help achieving a host of other benefits. techniques they can use to help PWD me with my diabetes, but I wish I • Find support: It is helpful to have deal with the psychosocial barriers of had more people to support me.” people who can support you when managing diabetes, such as: you are upset or experiencing • Education: RDNs can explain the Acceptance stress. RDNs can help PWD relationship between thoughts, Living with diabetes is challenging identify people in their life who emotions and behaviors in the and there may be certain aspects of can support them and teach them context of diabetes management. diabetes, including difficult thoughts how to ask these people for the For example, if a PWD says and emotions, that PWD may not be support that they need (5). something like, “My diabetes is able to control or change. In fact, • Other healthy coping skills: impossible to manage,” RDNs can trying to control these experiences There are many other strategies ask the person how this makes often makes them more intense and that PWD can use to manage them feel. The person may can also take a significant amount of stress. RDNs can make suggestions respond that they feel like a time and energy with little chance of and help PWD find strategies that failure, or that they feel hopeless. success. Although on the surface it will work for them. Anything that RDNs can point out that feeling may seem counterintuitive, working helps a PWD improve their mental this way probably has a negative with PWD to accept uncomfortable and emotional well-being is a impact on their diabetes self- thoughts and emotions can help healthy coping behavior (7). management behaviors. For many them be more flexible in how they Examples of healthy coping people, just becoming aware of respond to diabetes-related stressors. behaviors include reading, the connection between Acceptance is the ability to writing, watching television, thoughts, emotions and experience an emotion without taking a relaxing bath or shower, behaviors can be helpful. trying to change it or to observe a playing with children or pets • Challenge: If a person with thought or behavior without trying and practicing yoga. Consider diabetes says something that to control it (10). spending a few minutes with a does not seem accurate, or is PWD asking them to tell you what extreme (e.g., uses words like RDNs can work with PWD to help might be several healthy coping always, never or impossible), it them accept, as opposed to control behaviors for them. might be helpful to push back or avoid, uncomfortable thoughts and challenge what they are and emotions in the following ways: Cognitive Behavioral saying. For example, if someone • Educate: Teach PWD that it is not Techniques says, “I’m never going to be able always possible to control Cognitive Behavior Therapy (CBT) is a to get motivated to manage my negative thoughts and emotions therapeutic approach that focuses on diabetes,” RDNs might say, “Never related to diabetes. Help them see the relationship between thoughts, is a pretty extreme word. Has that the strategies that they use in emotions and behaviors. CBT helps there ever been a time when an attempt to control these things people become aware of how you’ve had even just a small bit of may work in the short-term but inaccurate or negative thinking can motivation?” If RDNs can help the often make things worse in the lead to negative emotions and person find an exception to their long-term. This can help PWD to unhealthy behaviors. It then teaches extreme thoughts, RDNs can help change the way they think about people how to evaluate their them see that their thoughts may their desire to control their thoughts in an objective manner, and not be completely accurate. experience. if appropriate, reframe their thoughts • Reframe: Once the RDN helps a • Practice mindfulness: to be more realistic, allowing them to person identify a thought that is Mindfulness means paying 17 attention to one’s experiences in them set goals, and also focus 3. Beck J, Greenwood DA, Blanton L, the present moment without on the reasons why the goal is et al. 2017 National Standards for Diabetes Self-Management Education judging them. Being mindful important to the person. They can and Support. The Diabetes Educator. helps give PWD space to notice talk about the challenges the 2017;43(5):449-464. what is happening without person might have in the process 4. American Association of Diabetes reacting. This can allow space to of achieving this goal and identify Educators. Problem Solving. https:// accept uncomfortable thoughts the reasons why they are willing www.diabeteseducator.org/living- with-diabetes/aade7-self-care- and feelings. to endure these challenges to behaviors/problem-solving. Accessed RDNs can encourage PWD to be get there. October 7, 2018. mindful and notice what is going on 5. American Association of Diabetes Educators. Healthy Coping. https:// around them, as if the person is an Summary www.diabeteseducator.org/living- outside observer of themselves using It is important for RDNs to address with-diabetes/aade7-self-care- the following simple steps: the psychosocial barriers that impact behaviors/healthy-coping. Accessed o Have the person to take a deep a person’s ability to perform diabetes October 7, 2018. 6. Surwit RS, van Tilburg MA, Zucker N, breath self-care behaviors. If addressing et al. Stress Management Improves o Ask them to do a quick scan of these barriers is a regular part of the Long-Term Glycemic Control in Type 2 their body and notice any RDN’s counseling, PWD are more Diabetes. Diabetes Care. 2002;25(1):30- physical sensations. Do they likely to feel that their provider is 34. 7. Thorpe CT, Fahey LE, Johnson H, have any pain? Do they feel any working with them collaboratively. It Deshpande M, Thorpe JM, Fisher EB. tension in their muscles? Does also offers RDNs the opportunity to Facilitating Healthy Coping in Patients any part of their body feel calm understand the challenges PWD may With Diabetes. The Diabetes Educator. 2012;39(1): or relaxed? encounter. This article sought to 33-52. o Ask them to take a minute to provide RDNs with practical 8. Mayo Clinic. Cognitive behavioral observe any thoughts that they techniques they can use to support therapy. https://www.mayoclinic.org/ are having. Remind them to PWD who encounter psychosocial tests-procedures/cognitive- behavioral-therapy/about/pac- notice their thoughts without barriers. By introducing strategies 20384610. Accessed October 7, 2018. judgement, as opposed to such as problem solving, healthy 9. Uchendu C, Blake H. Effectiveness of getting wrapped up in their coping, cognitive behavioral cognitive-behavioural therapy on thoughts. techniques and acceptance, RDNs glycaemic control and psychological outcomes in o Ask them to pay attention to can increase their comfort level in adults with diabetes mellitus: a their emotions. What emotions talking to PWD about common systematic review and meta-analysis do they have? What do these psychosocial barriers and actively of randomized controlled trials. Diabetic Medicine. 2017; emotions feel like? Do they feel work with PWD to address them. 34(3):328-339. them in certain parts of their 10. Gregg JA, Callaghan GM, Hayes SC, body? References Glenn-Lawson JL. Improving diabetes • Set goals: Identifying and 1. Young-Hyman D, de Groot M, Hill- self-management through Briggs F, Gonzalez J, Hood K, Peyrot acceptance, mindfulness, and values: working towards a goal that is M.. Psychosocial Care for People With A randomized controlled trial. Journal important to a person can make Diabetes: A Position Statement of the of Consulting and Clinical Psychology. it easier for them to tolerate American Diabetes Association. 2007;75(2):336-343. and accept uncomfortable Diabetes Care. 39(12):2126-2140. 11. Jon Kabat-Zinn: Defining Mindfulness. 2. Robertson SM, Stanley MA, Cully JA, https://www.mindful.org/jon-kabat- experiences. This allows them to Naik AD. Positive Emotional Health zinn-defining-mindfulness/. Accessed see that any discomfort they have and Diabetes Care: Concepts, October 8, 2018. is in service of something that Measurement, and Clinical they want to accomplish (10). Implications. Psychosomatics. 2012;53(1):1-12. RDNs can work with PWD to help

18 Applying Minimally Disruptive Medicine in People with Diabetes to Overcome Life and Self-care Challenges

Kasey Boehmer, MPH, PhD Jennifer Fedie, RDN, LD Susan Marschke, RD, LD Victor M. Montori, MSc Assistant Professor of Health Services Clinical Dietitian Manager, Nutrition Services Professor of Medicine Mayo Clinic HealthPartners Institute HealthPartners Institute Mayo Clinic Rochester, MN Minneapolis, MN Minneapolis, MN Rochester, MN

Introduction Minimally Disruptive PWT2D’s ability to access and use Current treatment guidelines for Medicine (MDM) health care and enact self-care, which persons with type 2 diabetes (PWT2D) Minimally Disruptive Medicine (MDM) in turn can affect outcomes. When include daily self-management tasks is a model that offers a new frame to HCPs respond to worsening outcomes such as glucose self-monitoring, care for PWT2D. It is defined as (e.g. A1C) with treatment intensification, exercise, healthy eating, stress “pursuing patient goals with the least which increases treatment burden management, and taking medications possible healthcare footprint on their while illness burden also increases (16). (1,2). Furthermore, PWT2D are lives” (14). First proposed in 2009, it This continues as a vicious cycle unless recommended to see their physician has been noted as one of the most the problem of imbalance of workload at least two times a year in addition to important innovations in medicine to capacity is addressed in care. attending appointments with other in the past two decades (15). The health care providers (HCPs), such concepts of MDM that drive care MDM divides the person’s workload as Care Coordinators, Diabetes are described in the Cumulative of managing chronic illness into Educators, Registered Dietitian Complexity Model (CuCoM) (Figure 1) four distinct types: sense-making; Nutritionists (RDNs), and Health (16). MDM defines complexity, planning and enrolling others; and Wellness Coaches (HWCs) (1,3). including challenges to self- enacting; and appraising (Table 1) management, as arising from the (17,18). Best estimates suggest that Research has focused on interventions balance of workload and capacity caring for a single condition requires intended to improve medication in patients’ lives. This balance affects 2.5 hours each day (19), and given taking and engagement in prescribed health behaviors, and subsequently, Figure 1. The Cumulative Complexity Model (CuCoM) 25 measures of diabetes management. These interventions often focus on self-management education and support (4,5), computer or mobile device applications for self-monitoring (6,7), nutrition programs (8,9), and exercise regimens (10,11). Yet, self- management remains challenging, and many PWT2D have measures of hemoglobin A1c (A1c) greater than recommended levels (12). Not taking medication as recommended or limited engagement in health behaviors has downstream clinical and economic consequences such as diabetes-related complications (13).

19 Table 1. Types of Work Done by PWT2D your grandchildren brings you joy. Can you tell me more about that?”). Patient Work Type Examples After a brief discussion, the HCP turns Sense-making Reading patient education materials, understanding to the inside of ICAN Discussion Aid diagnosis and treatment options, making sense of (Figure 3) and asks, “What stands out treatment instructions. to you from what you filled in here?” Planning and Organizing pills into a pill box, planning balanced This question is useful in helping the enrolling others meals and deciding who will prepare the meals. PWT2D prioritize issues that matter Enacting Going to the pharmacy, taking the pills, eating the most to them in the context of their prepared meal instead of stopping for takeout. HCP visit. Appraising Taking stock of whether they feel better or if the potential benefit of improved future health outcomes is worth the day-to-day work (particularly difficult ICAN Discussion Aid research is when patients are asymptomatic). still ongoing in its continued attempt to identify how it can be best Table 2. Domains of Capacity for PWT2D implemented across multidisciplinary teams, in addition to determining its Capacity Domain Definition & impact on capacity efficacy in improving communication. Biography Life story, roles, meaning making. Chronic illness, T2D It is being tested in a cluster- included, interrupts this biography. Successful randomized trial nationally in diverse renegotiation of biography to include illness improves patient capacity for self-care. settings across Kentucky, North Resources Finances, transportation, literacy, etc. Availability of Carolina, Minnesota and Wisconsin. and knowledge of how to access these resources and The Agency for Healthcare Quality others improves capacity. and Research has also funded Environment The health care environments where patients receive research, which will conclude care. Health care environments where patients find at the end of 2019, to create an understanding of their unique life stories, symptoms, implementation toolkit for a variety and needs improves capacity. of HCP to use ICAN to create person- Work Experiential accomplishment of completing the tasks associated with types of patient work. When patients centered care plans. The RDN are supported in starting small to gain a sense of co-authors on this article have accomplishment, capacity grows. participated in this implementation Social The social network of the patient. Social networks that research. Our recent pilot study of are supportive, accommodating, and understanding of ICAN in primary care encounters illness and patient work, improve capacity. showed persons living with chronic illness were more likely to bring up that the majority of PWT2D have at Tools and Strategies to issues of medication taking, eating least one additional condition (20), Support MDM in Practice habits and food choices, and exercise it may feel like a part-time job The ICAN Discussion Aid when using the aid. It was furthermore managing their own health. The ICAN Discussion Aid is the first demonstrated that use of the aid did Treatment burden is the subjective tool developed to support MDM in not add time to visits (24). impact of these types of work on practice (Figures 2 and 3) (23). It is well-being and quality of life (21). designed to uncover workload and Capacity Coaching capacity through conversation. The The ICAN Discussion Aid can also be Taking on self-management work HCP asks the PWT2D to complete the used to practice Capacity Coaching requires capacity, a multifaceted ICAN Discussion Aid at the beginning (25). This coaching approach draws concept described by the Theory of their visit. To begin the visit, the on many of the ideas and practices of of Patient Capacity (22). Capacity HCP reviews the back of the form traditional HWC, but is distinct in its has these five domains: Biography, (Figure 2). They then initiate focus on helping persons live well Resources, Environment, Work, and conversation with a question about with chronic illnesses using the MDM Social (BREWS), as delineated in the person’s response to one or more frameworks (25). In practice, once Table 2. of the questions they have answered a person is referred for Capacity (e.g. “You say spending time with Coaching, they and their coach meet 20 together at a convenient time and tailor the questions specifically to 4) Consider what you know about location to begin their conversation the person; for example, “So you what the PWT2D is being asked with ICAN. The coach then uses an talked about having two jobs. to do to manage their health appreciative inquiry approach (26) to Does your eating during the day conditions: sense-making, work together to understand the differ depending on which job planning and enrolling, enacting person’s life context, create a vision, you are working? When is the first and appraising. Consider how small action steps towards that time you eat on your shift?” Every each type of work applies to the vision, and ultimately perform question should be placed within self-management tasks you are progress appraisal. A coaching the person’s context. helping the person implement. approach enhances this work because coaching works to find Figure 2. ICAN Discussion Aid (Front Cover and Back Cover) solutions within the person’s knowledge. Before offering any advice, a coach works through what a person knows and asks permission to share potential solutions, if absolutely necessary. The coaching approach is an ongoing process and future visits or asynchronous communication are arranged as needed. Capacity Coaching does not currently require certification, as does traditional HWC, but training in coaching techniques is helpful. However, Appreciative Inquiry steps and coaching actions outlined in Table 3 can be adopted by RDNs.

Practical Pointers for Reprinted with permission from Mayo Foundation for Medical Education & Research RDN to Use MDM in Practice While there is no manual or Figure 3. ICAN Discussion Aid (Inner Pages) algorithm for practicing MDM, these are a few ways to adopt it in practice: 1) Begin the visit conversationally with ICAN. 2) Pose the question, “What are you doing when you are not sitting here with me?” early in the visit. Our research shows that when RDNs use this question they gain valuable insight into PWT2D’s daily lives which helps customize the consultation. 3) When taking the PWT2D’s food intake history, using the list of activities that the person shares in steps 1 and 2 helps orient the RDN questions. For example, rather than, “Do you eat lunch? Reprinted with permission from Mayo Foundation for Medical Education & Research If so, what do you usually have?” 21 Table 3. Appreciative Inquiry and MDM-oriented coaching actions 6. Harrison S, Stadler M, Ismail K, Amiel S, Herrmann-Werner A. Are patients with Appreciative MDM-Oriented Coaching Actions diabetes mellitus satisfied with technologies used to assist with Inquiry Step diabetes management and coping?: A Discover Use the ICAN Discussion Aid; understand patient’s life structured review. Diabetes Technology context (what brings them joy, what they do day-to- & Therapeutics. 2014;16(11):771–783. day) and the work they have been asked to do to care 7. Pal K, Eastwood SV, Michie S, et al. for their health (usually we see the enacting Computer-based diabetes self- medication taking or the recommended healthy eating management interventions for adults as the work and forget the sense-making, planning with type 2 diabetes mellitus. and enrolling, and appraising work). Cochrane Database of Systematic Reviews. 2013;(3):CD008776. Dream Understand what adapting and thriving with T2D and 8. Franz MJ, Boucher JL, Rutten-Ramos S, other comorbidities looks like to this patient. VanWormer JJ. Lifestyle Weight-Loss Design Help the patient create small experiments that are Intervention Outcomes in Overweight steps towards their idea of adapting and thriving. and Obese Adults with Type 2 Diabetes: A Systematic Review and Sometimes this means ignoring what guidelines say. Meta-Analysis of Randomized Clinical Deliver Offer to follow-up with the patient in-person or Trials. J Acad Nutr Diet. 2015;115(9): asynchronously by phone or email regarding how their 1447–1463. experiments went. Ideally, follow-up occurs within 1-2 9. Rehackova L, Arnott B, Araujo-Soares weeks but timing and modality should be dictated by V, Adamson AA, Taylor R, Sniehotta F. the patient. Efficacy and acceptability of very low energy diets in overweight and obese people with Type 2 diabetes mellitus: 5) Consider what you know RDNs can apply practical pointers a systematic review with meta-analyses. Diabetic Medicine. 2016;33(5):580–591. about the PWT2D’s capacity. here to use MDM in their practice. 10. Byrne H, Caulfield B, De Vito G. Effects Remember that capacity is not RDNs who want to learn more may of Self-directed Exercise Programmes just about resources. Think contact the authors of this article, on Individuals with Type 2 Diabetes Mellitus: A Systematic Review about whether you need visit minimallydisruptivemedicine. Evaluating Their Effect on HbA1c and more information about their org, and/or attend the annual Other Metabolic Outcomes, Physical Biography, Resources, Minimally Disruptive Medicine Characteristics, Cardiorespiratory Fitness and Functional Outcomes. Environment, Work or Social Workshop (27). Sports Medicine. 2017;47(4): network, to truly customize their 717–733. self-management plan and, References 11. Mosalman Haghighi M, Mavros Y, Fiatarone Singh MA. The Effects of subsequently, grow their 1. American Diabetes Association. Standards of Medical Care in Structured Exercise or Lifestyle capacity. Diabetes—2018. Diabetes Care. Behavior Interventions on Long-Term 6) Consider implementing an 2018;41(suppl 1):S1–S159. Physical Activity Level and Health Outcomes in Individuals With Type 2 appreciative inquiry approach 2. Serrano V, Spencer-Bonilla G, Boehmer KR, Montori VM. Minimally disruptive Diabetes: A Systematic Review, Meta- as detailed in Table 3. medicine for patients with diabetes. Analysis, and Meta-Regression. 7) Close visits with a summary of Current Diabetes Reports. 2017; Journal of Physical Activity and Health. 2018;15(9):697–707. what you have talked about, 17(11):104. 3. Powers MA, Bardsley J, Cypress M, 12. Fitch K, Pyenson BS, Iwasaki K. experiments to try this week (or et al. Diabetes self-management Medical claim cost impact of other designated time period), education and support in type 2 improved diabetes control for medicare and commercially insured and ask when and how the diabetes: a joint position statement of the American Diabetes Association, patients with type 2 diabetes. J Manag PWT2D would like to follow-up. the American Association of Diabetes Care Pharm. 2013;19(8):609–620, Ask if there are other ways in Educators, and the Academy of 620a–20d. 13. Chen Y, Sloan FA, Yashkin AP. which you can be supportive. Nutrition and Dietetics. The Diabetes Educator. 2017;43(1):40–53. Adherence to diabetes guidelines 4. Chrvala CA, Sherr D, Lipman RD. for screening, physical activity Summary Diabetes self-management education and medication and onset of complications and death. J Diabetes In summary, MDM prompts for adults with type 2 diabetes mellitus: a systematic review of the Complications. 2015;29(8):1228–1233. practitioners to consider the effect on glycemic control. Patient 14. May C, Montori VM, Mair FS. workload and capacity of each Educ Couns. 2016;99(6):926–943. We need minimally disruptive medicine. BMJ. 2009;339:b2803. person they see. Undiagnosed 5. Pillay J, Armstrong MJ, Butalia S, et al. Behavioral programs for type 2 15. Godlee F. Content is king. BMJ. workload-capacity imbalance can diabetes mellitus: A systematic review 2015;351. https://www.bmj.com/ lead to problems accessing and using and network meta-analysis. Ann Intern content/351/bmj.h3720 Accessed 11/20/2018. health care and enacting self-care. Med. 2015;163(11):848–860. 22 16. Shippee ND, Shah ND, May CR, Mair FS, Montori VM. Cumulative complexity: a functional, patient- OTCE Acknowledgments centered model of patient complexity can improve research and practice. J THANK YOU! Clin Epidemiol. 2012;65(10):1041–1051. 17. Gallacher K, May CR, Montori VM, Many thanks to the following people for assisting with the Mair FS. Understanding patients’ experiences of treatment burden development of this issue of On the Cutting Edge: in chronic heart failure using normalization process theory. Ann Fam Med. 2011;9(3):235–243. THEME TEAM 18. Gallacher K, Morrison D, Jani B, Hope Warshaw, MMSc, RD, CDE, BC-ADM, Theme Editor et al. Uncovering treatment burden as a key concept for stroke care: a Mark Heyman, PhD, CDE systematic review of qualitative research. PLoS Med. 2013;10(6): Monique Richard, MS, RDN, LDN e1001473. Anna Norton, MS 19. Jowsey T, Yen L, W PM. Time spent on health related activities Toby Smithson, MS, RDN, LD, CDE associated with chronic illness: a scoping literature review. BMC Public Health. 2012;12:1044. ARTICLE & CPE REVIEWERS 20. Piette JD, Kerr EA. The impact of comorbid chronic conditions on Claudia Shwide-Slavin, MS, RDN, BC-ADM, CDE diabetes care. Diabetes Care. Terri Fisher 2006;29(3):725–731. 21. Eton DT, Elraiyah TA, Yost KJ, et al. A Virginia Ives, RDN, LD, CDE, LPC systematic review of patient-reported measures of burden of treatment in Barbara Reis, RD, CDE three chronic diseases. Patient Relat Sylvia White, MS, RD, LPC, CDE Outcome Meas. 2013;4:7–20. 22. Boehmer KR, Gionfriddo MR, Rosanne Ainscough, RDN, CDE Rodriguez-Gutierrez R, et al. Patient capacity and constraints in the Mary Lou Perry, MS, RDN, CDE experience of chronic disease: a Geeta Siskand, MA, RDN, FAND, CDE, CLS, FNLA qualitative systematic review and thematic synthesis. BMC Family Sarah Williams, MS, RD, LD, CDE Practice. 2016;17:127. 23. Boehmer KR, Hargraves IG, Allen SV, Matthews MR, Maher C, Montori VM. OTHER CONTRIBUTORS TO PRODUCTION Meaningful Conversations in Living with and Treating Chronic Conditions: Paula Kellogg Leibovitz, MS, RD, CDN, CDE (Item Writer) Development of the ICAN Discussion Becky Sulik, RDN, LD, CDE (Item Writer) Aid. BMC Health Serv Res. 2016; 16(1):514. Lindsay Parnell (Copy Editor) 24. Boehmer KR, Dobler CC, Thota A, Alyce Thomas, RDN (DCE Chair) Branda M, Giblon R, Behnken E, et al. Changing Conversations in Linda Flanagan Vahl (DCE Administrative Manager) Primary Care for Patients Living with Chronic Conditions: A Pilot Study of Kathy Warwick, RD, LD, CDE (Print Communications Coordinator) the ICAN Discussion Aid 2018. In Press. Janice MacLeod, MA, RD, LDN, CDE, FAADE (OTCE Editor) 25. Boehmer KR, Burow N, Soyring J, Hargraves IG, Dick S, Montori VM. Capacity Coaching: A New Strategy for Coaching Patients Living With Multimorbidity and Organizing Their Care. Mayo Clin Proc. 2019. In Press. 26. Moore SM, Charvat J. Promoting To view the DCE officer directory, visit: health behavior change using appreciative inquiry: moving from https://www.dce.org/about-us/officers-leadership/ deficit models to affirmation models of care. Family & Community Health. 2007;30(suppl 1):S64–S74. 27. Knowledge and Evaluation Research (KER) Unit. MDM Workshop 2016. Available from: https://minimally disruptivemedicine.org/mdm- workshop/. 23 The Value of Peer Support for People with Diabetes and How Health Care Providers Can Promote in Practice

Anna Norton, MS Hope Warshaw, MMSc, RD, CDE, BC-ADM CEO, DiabetesSisters Owner, Hope Warshaw Associates, LLC Chicago, IL Asheville, NC

Introduction Communities (PSC), personal blogs, Literature Review The burdens of diabetes care, Twitter chats, discussion boards and A small but growing body of research regardless of type, rests mainly on more (9–11). Some peer support demonstrates the value of various people with diabetes (PWD) and/or takes place within and outside of the types of peer support in the mental their caregivers (if available and PSC as well as online and in-person. and emotional well-being of PWD involved) (1). Successful management While the amount of peer support (4–8,11). The global work of Peers for requires the understanding and has increased significantly, a relatively Progress, much of which has focused application of numerous concepts scant number of PWD and caregivers on diabetes, reports an average and technologies as well as the access it most likely due to lack of absolute 0.76% A1C improvement (5). wherewithal to make hundreds of awareness. HCPs can increase this by Cherrington et al has shown that the daily self-care decisions. Though exposing PWD to peer support (11). addition of a peer advisor to Diabetes some PWD obtain sufficient care, self- Self-Management Education and management education and support To provide insights about the value of Support (DSMES) over the course of from their health care providers peer support, the authors sought input one year in a rural living, low income, (HCPs), most do not (1). Even for those from PWD active in diabetes peer majority African American population who receive optimal interactions with support. These insights will provide the of mildly or moderately depressed HCPs, it’s relatively minimal (2). registered dietitian nutritionist (RDN) people with type 2 diabetes (T2D) with the importance of and need for improved some clinical outcomes Minimal attention has been paid by referral to peer support and encourage and reduced acute care visits and HCPs to the role of one’s mental health RDNs to include the critical role of peer hospitalizations (8). Several studies in managing diabetes. Through the support in counseling and refer PWD have additionally demonstrated leadership of some HCPs and PWD, and caregivers to reliable resources positive findings, such as greater attention to mental health and the (12,13). engagement in self-care with online importance of addressing psychosocial barriers to achieve positive outcomes is rising as evidenced by this issue of Definition of Peer Support On the Cutting Edge and other Peers for Progress, an international network of peer support researchers, publications (3). experts, and advocates, defines peer support as linking people with a chronic condition, such as diabetes, to share knowledge and experiences A small but growing body of research (4). It further defines peer support as being frequent, ongoing, accessible demonstrates the value of peer and flexible and can take many forms, from phone calls to group support in the mental health and meetings, home visits and text messaging. Peer support augments and emotional wellbeing of PWD (4–8). enhances other, more formal health care services and has four core The global reach of the internet and functions: 1) assistance in daily management; 2) social and emotional the growth of social media and social support; 3) linkages to clinical care and community resources; and 4) networking have facilitated the ongoing support delivered over time. Other terms, such as “peer health” availability and use of peer support (7), peer health advice and peer to peer health care, are also used (11). among PWD and has led to an This article uses the term peer support. evolving array of Peer Support

24 peer-driven peer support (6,7). A readily and regularly. Early on it was a therapy. My roller coaster blood concern raised by these publications place for people to ask questions, glucose control was greatly is that the lack of acknowledgement share concerns, and discuss improved.” of or an unsupportive attitude of complications, treatments and online peer support causes PWD to technologies. It has since become a PSC provide support between either not use these resources or not haven, home to friendships, validation, medical visits, at times when it may share the use of them with their HCP. and for some, improved diabetes care not be possible to reach a HCP. PSC and outcomes. In-person, grassroot also provide opportunities for PWD Insights from People organizations have contributed to the to give and receive support. with Diabetes rise of PSC realizing the need for Overwhelmed discussions outside medical offices to Shelby Kinnaird with T2D Most people with diabetes use the achieve better health outcomes. diagnosed in 1999 shares: word overwhelmed to describe “Having diabetes is a series of ups their initial feelings upon diagnosis. Mike Barry with T1D and downs. When you’re up, you are They’re overwhelmed with the diagnosed in 1984 shares: eating in a way that works for you, diagnosis itself, the medication and “Peer support from the DOC has been your blood sugars are in range, you treatment routine, the changes and very important to my physical and are sleeping soundly and exercising recommendations in eating habits, mental health since I discovered it in regularly, and you are managing food choices and physical activity. 2008. I enjoyed learning I was not stress well. Other times, when you Added to this list are the financial ‘alone’ but part of a big crowd of great are ‘down,’ you may feel like no stresses of managing a chronic illness, people working together. Starting matter what you do, you can’t get the possibility of complications, and pump therapy served as a catalyst to your diabetes under control. These more importantly, the feeling that HCPs find the DOC; the solid peer support are times you need help from others. focus significantly more time on provided there helped me attain better Your peer support community is treatment rather than mental health management of my diabetes and there for both your ‘ups’ and ‘downs’. and wellbeing. swapping diabetes stories with others Sometimes you can give, sometimes immediately helped my confidence. you need to take.” Renza Scibilia with T1D This has been the greatest mental diagnosed in 1998 shares: health benefit for me.” For caregivers, PSC have also “Diabetes can be overwhelming, provided safe refuge to discuss their tedious and terrifying. There are Engagement in PSC stretches across loved ones’ illness, with conversations things I hide away and don’t even generations and continents, with the ranging from disease education to want to think about, much less talk ease of technology and social media their own fears about complications, about. However, there have been bridging what was previously a and ways to offer support during times when I have been able to speak gap in learning about disease emergencies. of them with peers and I always walk management from others. It also away feeling lighter and reassured.” provides a 24/7 forum for people Debbie Antoniadis, the parent/ seeking support. caregiver of person with T1D Importance of Engagement since 2004. Her elderly father was Since the mid- 2000s (9,15), peer Richard Vaughn with T1D diagnosed with T2D in 2011. support and virtual PSC, referred to diagnosed in 1945 shares: “My daughter invited me to a by some as the Diabetes Online “I did not know another person with conference for PWD and their loved Community (DOC), has existed as a diabetes. I knew very little about ones, and in order to spend time with place for PWD and caregivers to feel complications. Diabetes seemed very her, I agreed. Little did I know how less isolated and offers a channel by simple and I was not scared because life altering and lifesaving the which to reach out for practical of my ignorance. I joined an online conference would turn out to be for guidance 24/7, share victories, move support group, and after 61 years both of us. The most emotional through life’s challenges as well as living with diabetes, learned what moment came when my beautiful stages and ages while giving and proper diabetes management daughter admitted that she had been receiving emotional support more should be. I began insulin pump dealing with some serious life

25 threatening, diabetes-related personal in the medical space. Several diabetes Phyllisa Deroze with T2D issues for many years… struggles she educators and professional diagnosed in 2011 shares: had been keeping completely to herself. organizations, including the American “Peer support has been invaluable She was met with unconditional Association of Diabetes Educators to me for a few reasons. First, by acceptance, understanding and peer (AADE) (11) have been instrumental establishing a connection with other support. She was provided with an in reversing these myths and people living with diabetes, they invaluable network of resources she misconceptions. They’ve begun offer me emotional support and utilized immediately on her road to partnering with PWD-led organizations practical guidance for managing recovery. For me, I was in a complete to support outreach to more HCPs, diabetes daily. Secondly, I never feel emotional display, finally able to share PWD and caregivers, highlighting rushed when I share my conversations with others (and my daughter) my positive effects of peer support in with other people living with diabetes. fears and concerns. We both left that enhancing life with diabetes (16). I’m more than my A1c with them and weekend feeling strong, courageous, that’s vital to my mental health.” empowered and confident about In-person gatherings hosted by the future in our own way. Our PWD-led organizations bring Summary: communication with each other has together PWD and their caregivers to Peer support, in all of its forms, is deepened and we’ve each found a discuss the successes and challenges increasingly being recognized as a network of supporters and new of managing diabetes, as well as potentially critical component in friends.” invite HCPs to discuss distress and achieving quality diabetes outcomes. anxiety and find avenues for HCPs should become more aware of Giving Back to Others continued care if needed (15). the importance of mental health and The positive effect of PSC, both well-being in the lives of PWD and online and in-person, has cultivated Nicole Bereolos, PhD, MPH, CDE their caregivers. HCPs should PWD-advocates and organizations with T1D diagnosed in 1992 recognize the value of peer support that organize and lead movements to shares: in the holistic care of PWD and improve the lives of their peers and “I discovered the DOC four years ago become knowledgeable about the caregivers. and was immediately amazed at the expanding research on peer support. practical and matter-of-fact topics: RDN should be aware of PSC and Richard Vaughn with T1D treating adhesive rashes, off-label other avenues for peer support in diagnosed in 1945 shares: medication uses, and the pros and their communities and refer PWD “I wanted to give support to others. cons of pumps on the market that I open to or in need of these resources I had received so much help online, had never heard of, even as a CDE. to them. I wanted to return the favor by During times when I was frustrated offering encouragement, inspiration with my own health, individuals References and hope. I do this on my Facebook from the diabetes community 1. Beck J, Greenwood DA, Blanton L, et al. 2017 National Standards for timeline, some of the type 1 diabetes responded supportively. I have been Diabetes Self-Management and groups (also on Facebook). I join fortunate to meet many in-person Support. Diabetes Care. 2017; parent groups, where they seem to and the unspoken mutual 40(10):1409–1419. be encouraged to know a 72-year old understanding is very powerful. I 2. Hernandez M. Percent of time spent by people with diabetes with a with type 1 diabetes who does not hope that others, regardless of medical professional in a year. Ask have any serious complications. I’ve diabetes type or treatment regime, Manny Hernandez Website. Published even met some of these people at have the opportunity to be touched October 1, 2015. http://askmanny. in-person diabetes conferences.” as much as I have. It is exciting to see diabetesblogs.com/2015/10/of-time- spent-by-people-with-diabetes-with- the strength of this community and a-medical-professional-in-a-year/. PSC have at times received scrutiny that it works to make the health of Accessed September 29, 2018. from HCPs who question their validity people living with diabetes better.”

26 3. Young-Hyman D, de Groot M, Hill- 12. Johnson & Johnson Diabetes Institute. Briggs F, Gonzalez JS, Hood K, Peyrot Transforming Diabetes Care. Twitter M. Psychosocial care for people with Chat: Diabetes peer support CPE CREDIT diabetes: a position statement of the communities. What healthcare ANSWER KEY American Diabetes Association. professionals need to know. Published Diabetes Care. 2016;39(12):2126–2140. June 2018. https://www.diabetes See the CPE credit self-assessment 4. Peers for Progress and National educator.org/docs/default-source/ questionnaire on page 34. Council of La Raza. Global Evidence living-with-diabetes/tip-sheets/peer- for Peer Support: Humanizing Health support/jjdi-twitter-chat-peer- 1. B Care. http://peersforprogress.org/wp- support-resource.pdf?sfvrsn=2. 2. C content/uploads/2014/09/140911- Accessed September 29, 2018. global-evidence-for-peer-support- 13. American Association of Diabetes 3. C humanizing-health-care.pdf. Accessed Educators. The Importance of Peer 4. A September 29, 2018. Support. https://www.diabetes 5. B 5. Fisher EB, Boothroyd RI, Elstad EA, et educator.org/living-with-diabetes/ al. Peer support of complex health tip-sheets-and-handouts/peer- 6. C behaviors in prevention and disease support. Accessed September 29, 2018. 7. D management with special reference to 14. Norton A, Bereolos N, Aprigliano CM. diabetes: systematic reviews. Clinical Peer support and education to better 8. C Diabetes and Endocrinology. 2017;3:4. thrive with diabetes. Published 2017. 9. D 6. Litchman ML, Edelman LS, Donaldson https://diabetessisters.org/sites/ 10. C GW. Effect of diabetes online default/files/2017%20IDF%20poster% community engagement on health 20ANorton%20NBereolos%20CMA indicators: Cross-sectional study. prigliano%20FINAL%20compressed. J Med Internet Res Diabetes. 2018;3(2): pdf. Accessed September 29, 2018. e8(1–15). 15. Sparling K. Happy Birthday, Six Until 7. Litchman ML, Rothwell E, Edelman L.S Me!Six Until Me Website. Published The diabetes online community: Older May 4, 2006. https://sixuntilme.com/ adults supporting self-care through wp/2006/05/04/happy-birthday-six- peer health. Patient Education and until-me/. Accessed September 29, Counseling. 2018;10(3):518–523. 2018. 8. Cherrington AL, Khodneva Y, Richman 16. Oser TK, Oser SM, McGinley EL, JS, Andreae SJ, Gamboa C, Safford Stuckey HL. A Novel approach MM. Impact of Peer Support on Acute to identifying barriers and facilitators Care Visits and Hospitalizations for in raising a child with type 1 diabetes: Individuals With Diabetes and Qualitative analysis of caregiver blogs. Depressive Symptoms: A Cluster- J Med Internet Res Diabetes. 2017; Randomized Controlled Trial. Diabetes 2(2):e27. Care. 2018.doi: 10.1177/19322968 18807689. [E-pub ahead of print]. 9. Hilliard ME, Sparling KM, Hitchcock J, Oser TK, Hood KK. The emerging diabetes online community. Current Diabetes Reviews. 2015;11(2):261–272. 10. Sparling K. The social diabetes project. Published 2018. http://www. w2ogroup.com/wp-content/ uploads/2018/06/Social-Diabetes- Project.pdf. Accessed September 29, 2018. 11. Warshaw H, Edelman D. Building Bridges through Collaboration and Consensus: Expanding Awareness and Use of Peer Support and Peer Support Communities Among People with Diabetes, Caregivers and Health Care Providers. J Diab Sci Tech. 2018;1–7.

27 Polonsky’s Pearls for Practice in Diabetes Care

Hope Warshaw, MMSc, RD, CDE, BC-ADM Owner, Hope Warshaw Associates, LLC Asheville, NC

Introduction • No one is unmotivated to live a but may have never had a William H. Polonsky, PhD, CDE is long and healthy life, yet diabetes conversation about how to weigh president and founder of the is mostly an invisible and the pros vs. the cons. Taking Behavioral Diabetes Institute (BDI) seemingly non-urgent disease that medication doesn’t equal failure. (https://behavioraldiabetes.org/) carries with it tons of obstacles to Reinforce that it’s not the number and an associate clinical professor successful implementation of self- or amount of medication one in psychiatry at the University of care. To be successful with PWD, takes that indicates how well California, San Diego. Bill has been give them personalized feedback they’re managing diabetes, rather involved in diabetes care for more than on metabolic goals and their it’s the results and management 30 years during which he has been an numbers. Congratulate them on of metabolic control. active and prolific researcher, speaker ANY achievement. The value of and leading advocate for considering positive reinforcement for actions Things that get in the way of the psychosocial needs of people with increases with ongoing contact. managing diabetes can be diabetes. In this interview Bill shared emotional, attitudinal, behavioral, pearls for practice and thoughts about interpersonal and environmental. how Registered Dietitian Nutritionists Given the range of obstacles, (RDNs) counseling people with diabetes management would be diabetes (PWD) and their care givers tough for anyone. Thinking this way can engage more collaboratively and should mean you and your clients are successfully. on the same side. You don’t have to • Well-managed diabetes is the use insulting terms like being in Q1: As we counsel PWD, what leading cause of NOTHING! (see denial or non-compliant. We need to should be core premises to image). Stop trying to scare PWD understand, recognize and remove keep in mind? about diabetes complications. Do critical obstacles. When we think address the doom and gloom that about PWDs differently and consider A1: We’re asking all health care they may already feel by using the their realities, HCPs can work more principles of “evidence-based providers (HCPs) to think about successfully and collaboratively. PWD differently. Don’t shame hope.” Let PWD know that with good care and efforts, odds are and blame PWD and stop Q2: How do we keep these core good that they can live a long stigmatizing them (refer to premises in mind and pick up and healthy life with diabetes. article by Guzman in this OTCE). on clients’ words and body • Address discouragement. We need language? Consider these core premises (1): to help PWD see that their self- care actions can make a positive, • Living with diabetes is tough, it’s a A2: Ask very precise, open-ended tangible difference. Use discovery time-consuming job that is not questions. Start with the most learning, life-applicable easy. It’s a balancing act that important question. I ask: “Can experiments. requires vigilance and dealing you tell me a couple of the ways • Reframe the need for/use of with frustration. You have it for that diabetes is driving you crazy?” glucose-lowering medications. the rest of your life and you don’t Another one: “What about PWD may fear the potential get paid to manage it. managing your diabetes do you negative effects of medication 28 find most challenging?” Then is happening with the person, but Q6: What are some of the listen well. Getting answers to in a way that makes the person psychosocial assessment tools these questions offers the best feel comfortable and doesn’t you suggest RDNs use? way to understand the individual. make them feel judged or From answers received, provide a accused. It lets them know you’ve A6: There are many (2,3). Limit summary statement: “Let me see if seen the same with other people yourself to one or two (so as not I understand what you’re telling and that it’s normal. For example, to overwhelm your client). Use at me...” Then ask follow up the RDN may say: “Many of the least one diabetes-specific questions and listen closely. By things that you’re telling me are measure. I recommend the DDS asking “What’s driving you the kinds of things I often hear from (2). It’s an excellent conversation crazy?” or, “What gets in your way someone who’s having significant starter, especially as you review of managing diabetes?” you’re problems with [fill in].” Then stop their responses together and much more likely to have a and ask: “Is that true for you?” then allow this process to further successful encounter. Using this kind of approach and direct your assessment language doesn’t put a person in questions. For measures that are Q3: Does asking these types of a box in which they feel a need to not diabetes-specific, it can be questions have the potential to get defensive. Rather, it lets them valuable to ask the PHQ-2 confuse people or, worse, put speak to the topic. Helping questions (first 2 items of the them off? They’re thinking, “I people feel that their thoughts PHQ-9 depression scale) though came in to talk about food,” or, and feelings are normal and that be forewarned that this is just a “I came in to get a ‘diet.’” they are not “bad” has the biggest screener for depression (3). (Note: effect in every population we’ve see Table 2 in reference 3 (open A3: RDNs can lay out a few premises ever worked with. Having PWD access article): Selected measures to begin the dialogue. For feel that their clinician “gets it” is for the evaluation of psychosocial example: “We’re here to talk about an enormous relief. It can put the constructs in the clinical setting.) eating well with diabetes.” Then RDN on the same side of the table Another simple tool for follow up with one of these with clients. understanding the individual and questions: “What does that mean starting a useful conversation is to you? What have you Q5: How can RDNs address the WHO-5, the World Health been told? What’s keeping you potential obstacles to clients’ Organization five-item well- from managing your diabetes as success? being scale (4). well as you might want to?” Then use “normalizing language” to A5: Consider that obstacles to making Q7: How can RDNs determine if/ help the person feel that they are changes might be lurking. The when a client needs a referral to not “bad” or abnormal at all. For client could be depressed. They a mental health provider/ example: “Just like you, many could be unconvinced that they eating disorder specialist? people have shared with me how have diabetes or that they can do overwhelmed they feel by all of the anything about it. They may think A7: Using the normalizing language dos and don’ts about foods and diabetes is a death sentence or is in detailed above, state: “Many of the food choices they need to manage God’s hand. Getting potential things that you’re telling me are the diabetes.” Questions like these obstacles on the table at the kinds of things I often hear from allow the RDN to follow up and beginning is a good idea. Using someone who’s having significant get to the nugget of content that language such as: “Before we get problems with depression or feeling will be most important and into specifics about making changes out of control about eating.” Then relevant to this person today. in your eating habits, let’s talk about ask: “Does this fit your experience?” what might make making changes It says to the PWD, I’m alerted and Q4: Tell me more about the concept difficult for you?” Some of these I’m concerned that something and value of using normalizing obstacles may come out in the serious is going on. If the client language? Diabetes Distress Scale (DDS) (see then confirms that this is true, the Q/A7). RDNs can review DDS RDN can feel more confident that A4: Using this language allows results and integrate observations a referral is warranted. clinicians to state what they think into their assessment questions. 29 Furthermore, using an approach Diabetes Associations Recognize like this makes it more likely that the client will accept such a Importance of Mental Health and referral. (Note: See Table 1— Champion Provider Training Situations that warrant referral of a person with diabetes to a mental health provider for evaluation and treatment in the final article in this issue, Diabetes Associations experts to develop the Mental Recognize Importance of Mental Introduction: Health Provider Diabetes Education Health and Champion Provider With increased recognition of the Program (MHDEP). This program Training.) role of mental health (1) and peer support (2) in the short- and long- was initiated to fill the growing need for mental health providers trained Note: Polonsky and colleagues have term health of people with diabetes in the complexities of diabetes developed a no-cost web-based (PWD), several diabetes associations management and effective program with nine video modules have developed programs, publications treatment strategies specific to PWD titled Critical Psychosocial Issues in and trainings. While these efforts Diabetes. CE credit is offered for CDE, take different approaches, they all (1). The program is designed to PA, NP, RN and MDs. Access these (as focus on two key goals: 1) raising teach mental health providers: well as the mugs) on the Behavioral awareness among health care 1) the demands of diabetes therapy Diabetes Institute website: https:// providers (HCPs) about the mental on PWD and their mental health behavioraldiabetes.org. health of PWD; and 2) improving the status and how to integrate this skills of HCPs to attend to and treat knowledge into mental health References the mental health of PWD. Registered therapy; and 2) issues specific to 1. Polonsky WH. Engaging the Dietitian Nutritionists (RDNs) should adults or pediatric populations that Disengaged: Strategies for Promoting enable mental health providers to Behavior Change in Diabetes. Johnson be aware of and track these initiatives & Johnson Diabetes Institute. https:// in order to engage in learning better understand how diabetes www.jjdi.com/webinar/behavior- opportunities appropriate for skill uniquely impacts youth, young change. Accessed September 29, adults and adults across the lifespan. 2018. building and continuing professional 2. Behavioral Diabetes Institute. Scales education. and Measures. https://behavioral For MHDEP training inclusion, diabetes.org/scales-and-measures. participants must identify as a Accessed September 29, 2018. American Diabetes 3. Young-Hyman D, de Groot Mary, Hill- Association: Mental mental health provider. It’s up to the Briggs F, Gonzales JS, Hood K, Peyrot Health Diabetes participant to determine if the APA M. Psychosocial care for people with continuing education credits would diabetes: a position statement of the Education Program American Diabetes Association. The Mental Health Provider Diabetes apply to their specific credentials. To Diabetes Care. 2016;39(12):2126–2140. Education Program Steering be listed in the directory, 4. Psychiatric Research Unit at World participants must show proof of Health Organization (WHO) Committee, Alisa Barksdale, MPH, Collaborating Centre in Mental Health. Associate Director of Professional state licensure as a mental health WHO (Five) Well-Being Index (1998 Services & Collaborations, and provider. Participants have primarily version). https://www.psykiatri- been PhD psychologists, social regionh.dk/who-5/Documents/ Ryan Woolley, MSPH, RD, Associate workers, and other licensed mental WHO5_English.pdf. Accessed Director of Evaluation and September 29, 2018. Outcomes Research health professionals. American Diabetes Association Arlington, VA The program consists of a one-day, in-person workshop, followed by an In 2017 the American Diabetes online 5-hour course. Participants Association (ADA) partnered with who meet all requirements are the American Psychological added to the ADA Mental Health Association (APA) and mental health Provider Referral Directory (https:// 30 professional.diabetes.org/mhp_ improved (p<0.05). Most program For questions visit https:// listing) as a resource to HCPs, PWD attendees currently treat adults with professional.diabetes.org/ and their caregivers. T2D, and in turn attendees reported mentalhealth or email the greatest perceived increase in [email protected]. ADA’s Standards of Medical Care (2) confidence was in the treatment of recommends that HCPs routinely these individuals. ADA will conduct JDRF screen PWD for psychosocial follow-up evaluation of participants Nicole Johnson, DrPH, MPH, MA challenges, including mental health to assess the longer-term impact of National Director, JDRF Mission concerns, and, if or when an issue is the program. New York, NY identified, refer individuals to a mental health provider with With MHDEP well into its second Anyone with type 1 diabetes (T1D), knowledge and experience in year of implementation, focus is or who has a loved one with T1D, diabetes (1). Table 1 provides a list renewed on awareness campaigns knows managing diabetes is an of situations that warrant referral of to increase utilization of the Mental around-the-clock job of checking a PWD to a mental health provider Health Referral Directory, as well as glucose levels, counting grams of (1). However, as this screening on-going education and resource carbohydrate, and dosing insulin (by becomes part of routine diabetes support for participants who have pump or injection) to give just the care, there are a limited number of completed the program. At least right amount of insulin at just the mental health providers with the three in-person programs will be right time. The physical elements of knowledge and experience offered in 2019 at both ADA and the job are then compounded by necessary to provide high quality APA professional education the emotional burden of life with a mental health care for PWD. meetings, with additional chronic disease. There are often opportunities pending. To address overwhelming moments of fear, Since the launch of this program this significant need ADA continues frustration and exasperation. The in June 2017, 261 mental health to ensure support for the emotional burden and associated providers have participated in the psychosocial challenges faced by distress of managing diabetes have 7-hour in-person workshop. To gain PWD and their families. been observed to have a measurable insight into the motivations of participants and determine the impact of the program, the ADA Table 1. Situations that warrant referral of a person with diabetes conducted pre- and post-program to a mental health provider for evaluation and treatment (1) evaluations. Among the 2018 • If self-care remains impaired in a person with diabetes distress after program participants, 82% currently tailored diabetes education treat PWD. Most participants were • If a person has a positive screen on a validated screening tool for primarily motivated to attend the depressive symptoms training to gain knowledge to better • In the presence of symptoms or suspicions of disordered eating behavior, treat their current patients. Our an eating disorder, or disrupted patterns of eating preliminary analysis using paired • If intentional omission of insulin or oral medication to cause weight loss is sample tests showed significant identified improvement in all areas of • If a person has a positive screen for anxiety or Fear of Hypoglycemia (FoH) diabetes-related knowledge • If a serious mental illness is suspected assessed (p<0.05), most notably in • In youth and families with behavioral self-care difficulties, repeated psychological treatment approaches hospitalizations for diabetic ketoacidosis, or significant distress for PWD. In addition, self-efficacy to • If a person screens positive for cognitive impairment treat people with type 1 (T1D), type • Declining or impaired ability to perform diabetes self-care behaviors 2 (T2D), and prediabetes and • Before undergoing bariatric surgery and after if assessment reveals an populations of children/adolescents, ongoing need for adjustment support adults, and parents significantly Reprinted with permission from the American Diabetes Association.

31 impact on the clinical outcomes and Summits. The diabetes community The American Association of overall health of people with T1D. In has shared their struggles with us Diabetes Educators (AADE) and medical literature, distress is a better and we have designed curriculum for diabetes educators have, for many predictor of glycemic control than the local summit events to meet years, been engaged with and depression, especially amongst those needs. Topics covered include promoted the ongoing support of children and teenagers with T1D; family conflict, diabetes distress, PWD as part of Diabetes Self- and the burden and distress affect diabetes transitions and more. We Management Education and Support not just the overall health of the have amassed a team of approximately (DSMES). The most recent 2017 person with T1D, but also his or her 35 psychologists nationwide who are National Standards for DSMES more family. participating in our summit programs strongly emphasizes the critical and advising JDRF on our other nature of support as an important JDRF is committed to helping people psychology-related initiatives. aspect of successful diabetes care (3). with T1D manage the burden of The 2015 Joint Position Statement diabetes to live their best lives In November 2018, JDRF convened from ADA, AADE and the Academy possible. We are investing in a meeting of national diabetes of Nutrition and Dietetics developed psychosocial work as a part of the associations, clinicians, clinical an algorithm for the four critical mission at JDRF. This means we are psychologists, and research junctures when DSMES should occur: committed to helping people with psychologists to identify at diagnosis, annually, when T1D at all points along the life course opportunities to address the complicating factors arise, and and are creating programming for all psychosocial needs of PWD. We during transitions in life and care (4). ages and stages of people with T1D. identified the need for more evidence This joint statement is being revised of cost saving of behavioral medicine for publication in 2019. During 2018 we created several to be able to integrate behavioral opportunities for young adults, medicine services as a standard of Regarding peer support and peer including the JDRF College Internship diabetes care. A need to gather more support communities (PSC), from Program, which places young adults evidence for group education/ 2010 to 2015, AADE began to with T1D with companies and diabetes therapy and the use of digital collaborate with several PSC. Efforts organizations nationally, and the resources to deliver care was also during this timeframe centered on annual JDRF Young Adult Conference identified. Meeting attendees noted active participation at AADE’s annual program (March 2019 in Dallas). We’re the need to make behavioral health conferences (5). AADE has become collaborating on projects for women services available and easy to access. increasingly committed to raising with T1D related to body image and awareness of and referral to peer expect to release a video series on life American Association of support and PSC to improve diabetes with T1D targeted to adults. Diabetes Educators self-care, outcomes and positive Matt Eaton mental health. In 2017, AADE To train HCPs, JDRF is funding a Marketing and Communications formalized this collaboration and program that improves capacity in Manager held two in-person meetings (5). psychological services for people with American Association of Diabetes T1D. We are funding up to five specific Educators As part of this effort AADE has diabetes psychology fellowships each Chicago, IL developed website content focused year and orchestrating a T1D training on peer support (http://www. program for those fellows. To date Joanne Rinker, MS, RD, CDE, LDN, DiabetesEducator.org/peersupport) JDRF has trained seven fellows and all FAADE that presently contains a video, a seven are now clinically licensed and Director of Practice and Content non-copyrighted resource list of working with individuals and families Development reliable peer support resources (6) with diabetes. American Association of Diabetes and more. A practice paper on Educators mental health is now available (7). JDRF is also integrating psychology Chicago, IL A publication on the value of online into each of our 50+ Type One Nation

32 and in-person peer support in diabetes care and the role of diabetes educators in recommending peer support to PWD is currently in development.

References 1. Young-Hyman D, de Groot M, Hill- Briggs F, Gonzalez JS, Hood K, Peyrot M. Psychosocial care for people with diabetes: A position statement of the American Diabetes Association. Diabetes Care. 2016;39(12):2126–2140. 2. American Diabetes Association. Lifestyle Management: Standards of Medical Care in Diabetes – 2018. Diabetes Care. 2018;41(suppl 1): S38–S50. 3. Beck J, Greenwood DA, Blanton L, et al. 2017 National Standards for Diabetes Self-Management and Support. Diabetes Care. 2017;40(10): 1409–1419. 4. Powers MA, Bardsley J, Cypress M, et al. Diabetes self-management education and support in type 2 diabetes: a joint position statement of the American Diabetes Association, the American Association of Diabetes Educators, and the Academy of Nutrition and Dietetics. Diabetes Care. 2015;38(7):1372–1382. 5. Warshaw H, Edelman D. Building Bridges through Collaboration and Consensus: Expanding Awareness and Use of Peer Support and Peer Support Communities Among People with Diabetes, Caregivers and Health Care Providers. J Diab Sci Tech. 2018;1–7. 6. American Association of Diabetes Educators. The Importance of Peer Support. https://www.diabetes educator.org/living-with-diabetes/ tip-sheets-and-handouts/peer- support. Accessed September 29, 2018. 7. American Association of Diabetes Educators. A practical approach to mental health for the diabetes educator. Published 2018. https:// www.diabeteseducator.org/docs/ default-source/practice/practice- documents/practice-papers/a- practical-approach-to-mental-health- for-the-diabetes-educator.pdf?sfvrsn =2. Accessed November 13, 2018.

33 After reading this issue of CPE Credit Self-Assessment Questionnaire On The Cutting Edge, Overview of Common Psychosocial Barriers among People with Diabetes, 1. “All or Nothing Thinking” is an c) Invite parents and children to current DCE members can earn example of which type of list diabetes-related tasks the 4.0 hours of free continuing self-management barrier for child can do themselves to professional education units persons with diabetes ? allow them to assume more (CPEUs level 2) approved by the a) Emotional responsibility. Commission on Dietetic b) Cognitive d) Assume that a very informed Registration (CDR). CPE eligibility c) Social adolescent will nearly always is based on active DCE membership d) Coping follow through with important status from June 1, 2018 to May diabetes self-care behaviors 31, 2019. 2. Which of the following on their own so reduced approaches used by health DCE members must complete the parental monitoring is post-test of the CPEs page on the care providers inadvertently appropriate. DCE website: http://www.dce.org/ contribute to diabetes stigma? resources/cpeus/ by 4/30/2021. a) Describing diabetes and 4. Why might Latinos benefit from For each question, select the one available treatment options using Share Medical best response. After passing the using highly-complex or Appointments (SMAs) to deliver quiz, to view/print your certificate, technical language. diabetes care? access your CPEU credit history or b) Avoiding discussions a) Group visits can enhance view the learning objectives, go regarding the role of social connectedness and to: http://www.dce.org/account/ contributing factors such as community support valued history. weight and dietary intake. in many Latino cultures. c) Using language that infers b) Information shared between Please record 4.0 hours on your failure when a person with participants in a group can be Learning Activities log and retain the certificate of completion in diabetes does not reach more correct and appropriate the event you are audited by suggested goals. because of shared beliefs. CDR. The certificate of completion d) Discussing nutrition goals and c) Group participants are more is valid when the CPE self- food choices while avoiding likely to share faith-based assessment questionnaire terms such as “good” or “bad.” beliefs which will always have is successfully completed, a positive impact on how submitted, and recorded by 3. The Family Approach to Diabetes diabetes care approached. DCE/Academy of Nutrition and Management (FADM) includes d) Taking advantage of the family Dietetics. OTCE is considered which of the following structures and beliefs always Pre-Approved Self-Study. recommendations for helping result in positive outcomes in adolescents with diabetes and spite of family backgrounds their parents with diabetes and beliefs management tasks? a) Having the diabetes educator 5. Which of the following assign roles or tasks to each statements are true regarding the family member to ensure that role and importance of food in important tasks are being the black/African-American done regularly. culture? b) Help the family create a a) Dieting or restricting food is communication plan that uses often seen as a strength that 4 CPEUs are awarded for reading this issue and frequent and thorough promotes positive change successfully completing the quiz. Access quiz monitoring and questioning within the family. and certificate by going on to www.dce.org multiple times per day to b) Food preparation and professional resources. The website assure that tasks are being seasoning are often seen as automatically logs your CPEU history. performed. expressions of love. 34 c) Food recommendations that 9. Cognitive behavior therapy is a 10. A key function of peer support focus on weight change are therapeutic approach that is to: often more acceptable. focuses on: a. Provide access to a network of d) Discussions involving foods a. Avoiding having the person support during acute crisis are equally important when attempt to reframe unrealistic periods only. blood sugar levels are well thoughts. b. Replace more formal health controlled or not. b. Descriptors that use extreme care services. words such as “never” or c. Provide linkages to clinical 6. Which of the following is a core “impossible”. care and community premise for RDNs to keep in c. Problem-solving to enable the resources. mind when counseling PWD? PWD to make rapid decisions d. Allow the PWD to remain a. Managing diabetes has necessary to manage their isolated since all become easier over the years diabetes. communication is done and it is not that difficult to d. The relationship between electronically. manage on a day-to-day basis. thoughts, emotions, and b. Well-controlled diabetes is the behaviors. leading cause of blindness and kidney failure. c. No one is unmotivated to live a long and healthy life. d. The number of medications a PWD is taking reflect how well they manage their diabetes.

7. The technique of using normalizing language tends to make the client feel: a. Uncomfortable and judged. b. It is best if the clinician decides what is best for the client to do. c. They are in “a box” and often become defensive. d. They can speak to the topic and that they are not “bad”.

8. Minimally Disruptive Medicine is a model that defines treatment burden as: a. An objective measure of a person’s workload in managing chronic illness b. Pursuance of the patient’s goals that have the least impact on their daily life c. A subjective assessment of the impact of a person’s workload on their well-being and quality of life d. Being decreased when there is an intensification of treatment 35 Diabetes Care and Education a dietetic practice group of the

PRINTED ON RECYCLED PAPER

LETTERS TO The Editor

Have you ever wanted to ask an OTCE author a question after reading an article? Did you ever disagree with an author? Or maybe you just wanted to comment on something you read. The Letters to the Editor column is a forum to ask questions or comment about any of the OTCE articles that interest you. Please send your questions or comments to the OTCE editor at the following address:

Janice MacLeod, MA, RD, LDN, CDE, FAADE OTCE Editor [email protected]

Let us hear from you!