The Use of Language in Diabetes Care and Education Diabetes Care 2017;40: /dci

Transcription

1 1790 Diabetes Care Volume 40, Deember 2017 The Use of Language in Diabetes Care and Eduation Diabetes Care 2017;40: Jane K. Dikinson, 1 Susan J. Guzman, 2 Melinda D. Maryniuk, 3 Catherine A. O Brian, 4 Jane K. Kadohiro, 5 Rihard A. Jakson, 6 Nany D Hondt, 7 Brenda Montgomery, 8 Kelly L. Close, 9 and Martha M. Funnell 10 CONSENSUS REPORT Language is powerful and an have a strong impat on pereptions as well as behavior. A task fore, onsisting of representatives from the Amerian Assoiation of Diabetes Eduators (AADE) and the Amerian Diabetes Assoiation (ADA), onvened to disuss language in diabetes are and eduation. This doument represents the expert opinion of the task fore. The literature supports the need for a language movement in diabetes are and eduation. There are effetive ways of ommuniating about diabetes. This artile provides reommendations for language used by health are professionals and others when disussing diabetes through spoken or written wordsdwhether direted to people with diabetes, olleagues, or the general publi, as well as researh questions related to language and diabetes. It has been well established that diabetes is a omplex disease that is hallenging to manage on a daily basis. There has been abundant disussion reently (1,2) about the patient experiene, ommuniation, and questions about how to make life better for people with diabetes. While information exists on how to interat more effetively with people living with diabetes (3), there is very little disussion about the language we use in these enounters. People experiene both diabetes and the language of diabetes in ontext. Language is the prinipal vehile for the sharing of knowledge and understanding (4). Words are immediately shaped into meanings when people hear or read them (5,6), and those meanings an affet how a person views him or herself. Language lies at the ore of attitude hange, soial pereption, personal identity, intergroup bias, and stereotyping. The use of ertain words or phrases an intentionally or unintentionally express bias about personal harateristis (e.g., rae, religion, health, or gender). Words have the power to elevate or destroy (7). This is also true of language referring to persons with diabetes, whih an express negative and disparaging attitudes and thereby ontribute to an already stressful experiene of living with this disease. On the other hand, enouraging and ollaborative messages an enhane health outomes (8). How we talk to and about people with diabetes plays an important role in engagement, oneptualization of diabetes and its management, treatment outomes, and the psyhosoial well-being of the individual. For people with diabetes, language has an impat on motivation, behaviors, and outomes (9). A task fore, onsisting of representatives from the Amerian Assoiation of Diabetes Eduators (AADE) and the Amerian Diabetes Assoiation (ADA), onvened to disuss language in diabetes are and eduation. The task fore reviewed the literature regarding language used in the delivery of diabetes are and eduation and made reommendations to enhane the ommuniation proess. This doument represents the expert opinion of the task fore. The task fore members defined and adopted four priniples that guided the work and served as a ore set of beliefs for this artile. Table 1 presents the guiding priniples. A language movement in health are is not a new onept. Psyhologists, liniians, and even the lay ommunity have been disussing the language of health for deades, 1 Department of Health & Behavior Studies, Teahers College, Columbia University, New York, NY 2 Clinial/Eduational Servies, Behavioral Diabetes Institute, San Diego, CA 3 Clinial Eduation Programs, Joslin Diabetes Center, Boston, MA 4 Department of Siene and Pratie, Amerian Assoiation of Diabetes Eduators, Chiago, IL 5 Diabetes Eduation and Support Consulting Servies, Reno, NV 6 Grassroots Diabetes, Boston, MA 7 Asension St. John Hospital, Detroit, MI 8 AstraZenea Pharmaeutials, Bothell, WA 9 Close Conerns and The diatribe Foundation, San Franiso, CA 10 University of Mihigan Medial Shool, Ann Arbor, MI Corresponding author: Jane K. Dikinson, dikinson@t.olumbia.edu. Brenda Montgomery is the ADA s President, Health Care & Eduation, and is the ADA representative on the language in diabetes are and eduation task fore. This artile is being simultaneously published in Diabetes Care and The Diabetes Eduator by the Amerian Diabetes Assoiation and the Amerian Assoiation of Diabetes Eduators by the Amerian Diabetes Assoiation and the Amerian Assoiation of Diabetes Eduators. Readers may use this artile as long as the work is properly ited, the use is eduational and not for profit, and the work is not altered. More information is available at

2 are.diabetesjournals.org Dikinson and Assoiates 1791 Table 1 Guiding priniples for ommuniation with and about people living with diabetes Diabetes is a omplex and hallenging disease involving many fators and variables Stigma that has historially been attahed to a diagnosis of diabetes an ontribute to stress and feelings of shame and judgment Every member of the health are team an serve people with diabetes more effetively through a respetful, inlusive, and person-entered approah Person-first, strengths-based, empowering language an improve ommuniation and enhane the motivation, health, and well-being of people with diabetes and evidene exists demonstrating that language will hange over time. For deades, a substantial amount of the language around diabetes has been foused on negative outomes and laden with judgment and blame, and it has not adequately onsidered individual needs, beliefs, and hoies. As our knowledge of diabetes has expanded and as more effetive treatments have emerged, we are moving into a more personalized approah to diabetes are and eduation. As suh, it is time for the language around diabetes to reflet this evolution. Diabetes Australia, upon identifying that language in diabetes an be inaurate and harmful, published a position statement alling for a new language for diabetes, summarizing negative emotional and behavioral outomes of some language hoies in diabetes (10). The International Diabetes Federation published a Language Philosophy beause of the belief that there is a responsibility to set an example about appropriate language to others (11). This artile provides reommendations for language related to diabetes that is respetful, inlusive, person entered, and strengths based (see detailed definitions in Table 2) to diabetes liniians, diabetes eduators, researhers, journal editors and authors, and other professionals who ommuniate about diabetes (e.g., Table 2 Key definitions Word/phrase Strengths-based language Person-first language authors of patient eduation publiations). These reommendations are onsistent with the Amerian Psyhologial Assoiation style guidelines for nonhandiapping language, whih originated in the Committee on Disability Issues in Psyhology (the following is adapted from nonhandiapping-language.aspx): Nonhandiapping language maintains the integrity of individuals as whole human beings by avoiding language that implies that a person as a whole is disabled (e.g., diabeti hild) equates a person with his or her ondition (e.g., diabeti) has superfluous and negative overtones (e.g., unmotivated, suffering with/from diabetes) is regarded as a judgment (e.g., nonompliant, nonadherent, poorly ontrolled) The ADA Standards of Medial Care in Diabetesd2017 (12) alls for a patiententered ommuniation style that uses ative listening, eliits patient preferenes and beliefs, and assesses literay, numeray, and potential barriers to are in order to optimize patient health outomes and health-related quality of life. The AMA Manual of Style (13) alls for authors to do the following: Definition Opposite of a defiit approah; emphasizing what people know and what they an do (7). Fousing on strengths that an empower people to take more ontrol over their own health and healing (103). Example: Lee takes her insulin 50% of the time beause of ost onerns (instead of Lee is nonompliant/nonadherent). Words that indiate awareness, a sense of dignity, and positive attitudes toward people with a disability/disease. Plaes emphasis on the person, rather than the disability/disease (88). Example: Lee has diabetes (instead of Lee is a diabeti). Avoid labeling (and thus equating) people with their disabilities or diseases (e.g., the blind, shizophrenis, epileptis). Instead, put the person first. Avoid desribing persons as vitims or with other emotional terms that suggest helplessness (afflited with, suffering from, striken with, maimed). Avoid euphemisti desriptions suh as physially hallenged or speial. In an effort to build on those ideas and further define effetive ommuniation in diabetes, the task fore developed five evidene-informed reommendations (see Table 3) for person-entered and strengths-based ommuniation as well as a list of words and phrases that have potentially negative onnotations, along with suggestions for alternatives (see Table 4). This artile emphasizes the rationale, based on expert onsensus, for a reevaluation of the way we talk about diabetes, even if the meanings of partiular words hange over time. Language is important for health are professionals to onsider as they work to build and strengthen therapeuti relationships with their patients (14). Awareness of language also applies to family members and aregivers of people with diabetes, orporate spokespeople, and members of the media who are in a position to speak and write about diabetes. This artile is not meant to suggest how people living with diabetes talk or write about themselves as individuals. In addition, other key aspets of ommuniation, inluding design and layout of information, health literay, and health numeray are beyond the sope of this artile and have been disussed elsewhere. RECOMMENDATIONS 1. Use Language That Is Neutral, Nonjudgmental, and Based on Fats, Ations, or Physiology/Biology In health are, the way in whih something is said is equally important as what is atually being said (15,16). Words, whih are inseparable from the onepts they refer to (5), are powerful. Medial language has an influene over patients and plays a entral role in defining experiene and understanding. How one hears and interprets language related to disease has an impat on one s pereption of their health and themself as a person (5). Words that start out as simple desriptors antakeonpositiveornegativeonnotations over time (17). Judgmental words and messages an inflit shame, leading a person to pull

3 1792 Consensus Report Diabetes Care Volume 40, Deember 2017 Table 3 Reommendations Use language that 1. is neutral, nonjudgmental, and based on fats, ations, or physiology/biology 2. is free from stigma 3. is strengths based, respetful, inlusive, and imparts hope 4. fosters ollaboration between patients and providers 5. is person entered away from other people and situations (18). Adults living with diabetes who partiipated in a fous group study (n 5 68) reported that they experiene judgment and blame through the language used by health are professionals, friends, family, and the general publi (16). It is preferable in patient and professional eduation, researh, publishing, and health are to use words that are fatual, neutral, and nonjudgmental rather than words that impose blame or imply negative attitudes (19 21). Possibly beause of pereived judgment from health are professionals, people with diabetes sometimes alter or underreport blood gluose levels (22) or omit information during health are provider visits (23). Adolesene is an espeially vulnerable time for ommuniation and self-are (24). Therefore, adolesene is an important period when effetive, nonjudgmental messages may help establish trusting relationships, whih then foster open and honest ommuniation (16). In a study of postoperative patients, negative words were assoiated with higher pain sores and higher levels of the stress hormone ortisol when ompared with no words or positive words (25). Researh has linked pain-related words to ativating brain networks similar to unpleasant stimulation (26). Another study showed that partiipants undergoing venipunture reported experiening signifiantly more pain when hearing negative words suh as beware or sting (27). The pereption of ontrol has evolved over time. Use of ontrol in diabetes ame from linial researh and was reinfored with the Diabetes Control and Compliations Trial (DCCT) (28). Over time it has ome to be pereived as ability to ontrol or lak of ontrol, and there has been a strong emphasis on this word when disussing diabetes today (23,29). The onlusion of Broom and Whittaker (23) was that this type of messaging positions people with diabetes as disobedient hildren or as wiked or foolish adults, whih is ontraditory and onfusing for people with diabetes. Broom and Whittaker suggested that there may be moral impliations regarding people s ability to ontrol blood gluose levels, food hoies, weight, physial ativity, and one s self. As a result, failure to ontrol diabetes not only relates to health but also implies a moral failing (23). The term ontrol, when used in disussing diabetes management ativities, plaes responsibility on the person with diabetes while also implying stritly following the advie of the health are professional who holds authority and knowledge. On the other hand, some people interpret taking ontrol as purposely going against what providers suggest (23). In soiety there is value to being in ontrol, while being out of ontrol means failure. The frequent referene to ontrol in diabetes forms a moral disourse surrounding the disease and may eliit feelings of shame. It may be more effetive to serve those with diabetes without using language that plaes impliit or expliit judgment on them or blames them for their health-related problems (23). Diabetes onversations may not always inlude a disussion of the effort and/or intent on the part of the person managing the disease. A onversation about ontrol that omits mention of a patient s effort/intent puts the fous solely on the effet or expeted outomes of diabetes are. The goal, instead, is to use language that is neutral, nonjudgmental, and based on fats, ations, or physiology/biology (see Table 4). 2.UseLanguageThatIsFreeFrom Stigma Stigma has been defined as labeling and identifying human differenes via stereotyping in whih the labeled person is linked to undesirable harateristis (30). Health-related stigma is a psyhologial fator that negatively influenes the lives of people living with diabetes (23). In diabetes, unontrolled, diabeti, nonompliant, and nonadherent an be stigmatizing terms that assoiate with stereotypes inluding lazy, unmotivated, unwilling, and don t are (31). Results from an online survey (n 5 12,000) to assess stigma related to diabetes and the assoiated psyhologial impat demonstrated that most people with type 1 diabetes (76%) and type 2 diabetes (52%) have experiened stigma (32). In fat, the most widely reported forms of diabetes-related soial stigma were the pereption of having a harater flaw or a failure of personal responsibility (81%) and being a burden on the health are system (65%). Another study showed that people with diabetes reported pereptions of being weak, fat, lazy, overeaters or gluttons (33), poor or bad people, and not intelligent (34). While these harateristis are often pereived by people with type 2 diabetes, there is evidene that people with type 1 diabetes feel similar stigmatization (35,36). Researh has shown that people experiening stigma are less likely to seek follow-up are (37) and are more likely to feel psyhologial distress (38). In a study of people living with diabetes (n 5 3,347), data from a self-administered questionnaire demonstrated that pereived stigma is assoiated with inreased psyhologial distress, depressive symptoms, dereased soial support, and dereased quality of life (39). These assessments were onfirmed in a study where stigma related to diabetes was assoiated with elevated A1C; inreased blood gluose variability; feelings of guilt, shame, blame, embarrassment, and isolation; and negative impats on soial life (32). A reent randomized ontrolled trial employing the Weight Bias Internalization Sale (40) demonstrated that higher weight stigma predited inreased odds of having high triglyerides (odds ratio 1.88 [95% CI ]) and may heighten ardiometaboli risk (41). Living with a stigmatizing disease an have a psyhologial impat that an be detrimental to self-are (38). Several fators ontribute to diabetes-related stigma, inluding blame, fear, disgust, soial norms, and avoidane of disease. While stigma is experiened by people with both type 1 and type 2 diabetes, it tends to be perpetuated even within the diabetes ommunity. People with type 1 diabetes have reported beliefs about those with type 2 diabetes being responsible for their disease, whih reates an us vs. them dynami (36).

4 are.diabetesjournals.org Dikinson and Assoiates 1793 Table 4 Suggestions for replaing language with potentially negative onnotations Language with potentially negative onnotations Suggested replaement language Rationale Compliant/ompliane, nonompliant/ nonompliane, adherent/nonadherent, adherene/nonadherene Control (as a verb or adjetive) Controlled/unontrolled, well ontrolled/ poorly ontrolled Control (as a noun) Glyemi ontrol, gluose ontrol, poor ontrol, good ontrol, bad ontrol, tight ontrol He takes his mediation about half the time. She takes insulin whenever she an afford it. He eats fruits and veggies a few times per week. Engagement Partiipation Involvement Mediation taking Manage She is heking blood gluose levels a few times per week. He is taking sulfonylureas, and they are not bringing his blood gluose levels down enough. A1C Blood gluose levels Blood gluose targets Glyemi target/goal Glyemi stability Glyemi variability The words listed in the first olumn are inappropriate and dysfuntional onepts in diabetes are and eduation. Compliane and adherene imply doing what someone else wants, i.e., taking orders about personal are as if a hild. In diabetes are and eduation, people make hoies and perform self-are/self-management. Fous on people s strengthsdwhat are they doing or doing well and how an we build on that? Fous on fats rather than judgments. Control is virtually impossible to ahieve in a disease where the body no longer does what it is supposed to do. Use words/phrases that fous on what the person is doing or doing well. Fous on intent and good faith efforts, rather than on passing or failing. Fous on physiology/biology and use neutral words that don t judge, shame, or blame. Fous on neutral words and physiology/biology. Define what good ontrol means in fatual terms and use that instead. Diabeti (as an adjetive) Diabeti foot Foot uler, infetion on the foot Fous on the physiology or pathophysiology. Diabeti eduation Diabetes eduation Diabeti eduation is inorret (eduation does not have diabetes). Diabeti person Person with diabetes Put the person first. How long have you been diabeti? How long have you had diabetes? Avoid using a disease to desribe a person. Diabetes patients Patients with diabetes Avoid desribing people as a disease. Diabeti (as a noun) Are you a diabeti? Nondiabeti, normal Imperatives Can/an t, should/shouldn t, do/don t, have to, need to, must/must not Regimen, rules Do you have diabetes? Person living with diabetes Person with diabetes Person who has diabetes Person who does not have diabetes Person without diabetes Have you tried... What about... May I make a suggestion... May I tell you what has worked for other people... What is your plan for... Would you like to onsider... Plan Choies Words/phrases that fous on the provider I got him/her to... He started taking insulin... I want you to... She lost 25 pounds... Let people... May we make a plan for... May I make a suggestion... Setting goals for... Failitating identified goals and reating a plan with... Self-direted goals Person-first language puts the person first. Avoid labeling someone as a disease. There is muh more to a person than diabetes. When in doubt, all someone with diabetes by their name. See above. The opposite of normal is abnormal ; people with diabetes are not abnormal. Words and statements that are diretives make people with diabetes feel as if they are being ordered around like hildren. They an inflit judgment, guilt, shame, and blame. Use words that empower people, rather than words that restrit or limit them. Give the person with diabetes redit for what they aomplished. Make it about the person with diabetes and hoies, rather than making it about the provider. Continued on p. 1794

5 1794 Consensus Report Diabetes Care Volume 40, Deember 2017 Table 4 Continued Language with potentially negative onnotations Suggested replaement language Rationale Prevent, prevention Redue risk(s)/risk redution Delay There is no guarantee of prevention (disease or ompliations); therefore, fous on what the person an do, whih is lower their risks and/or delay onset. This also limits blame if the person does develop diabetes or ompliations eventually, despite efforts to prevent it. Refused Delined Use words that build on people s strengths and respet the person s right to make their own deisions. Vitim, suffer, striken, afflited Words or phrases that imply judgment Lifestyle disease Diffiult patient In denial Unmotivated, unwilling What did you do?...lives with diabetes...has diabetes...diagnosed with diabetes Diabetes Ms. Smith has a foot sore that is not healing and is having a diffiult time with offloading. I m having a diffiult time with Ms. Smith. Dan understands that diabetes an harm him; he does not see diabetes as a priority with everything else that s going on in his life right now. John has not started taking insulin beause he s onerned about weight gain. He sees insulin as a personal failure. Tell me about... May I make a suggestion? We annot assume someone is suffering. This puts them in the vitim mode, rather than empowering them. Build on people s strengths instead. Desribe behavior fatually rather than labeling the person. In denial is inaurate. Most people desribed this way know they have diabetes and are not denying that they have it. This is a refletion that the person does not see diabetes as an important and/or immediate onern. Few people are unmotivated to live a long and healthy life. The hallenge in diabetes management is there are many pereived obstales that an outweigh the understood benefits. As a result, many people ome to the onlusion that hanges are not worth the effort or are unahievable. The idea is to enourage the person to move away from why? to what now? Disussion of suessful responses an be a more effetive teahing tool than pointing out mistakes and errati numbers. Cheating, sneaking Making hoies/deisions Use strengths-based language. Good/bad/poor Numbers Choies Food Safe/unsafe Good and bad are value judgments. Fous on physiology/biology and tasks/ations using neutral words. Fail, failed, failure She failed metformin. Test Test blood gluose Test strips Words or phrases that threaten You are going to end up blind or on dialysis. Metformin was not adequate to reah her A1C goal. People don t fail mediations. If something is not working, we hoose a new diretion. Chek blood gluose/blood gluose monitoring A test implies good/bad or pass/fail. Blood gluose monitoring/heking Strips, gluose strips blood gluose is a way to gather information that is used to make deisions. More and more people are living long and healthy lives with diabetes. Let swork together to make a plan that you an do in your daily life. Many people who are not reahing metaboli goals understand they are at risk for ompliations. Sare tatis rarely are effetive. Work together on speifi, ahievable, and realisti self-direted goals that an improve metaboli outomes. Changing the language of diabetes ould serveasan advoay ampaign to redue diabetes-related stigma (36). There are several studies that have investigated preferred terms for desribing obesity, a risk fator for developing type 2 diabetes. People have identified obesity as an undesirable (19,20,42 44) and highly stigmatizing term (44) that

6 are.diabetesjournals.org Dikinson and Assoiates 1795 implies a moral or estheti failing (42). People experiening or fearing healthrelated stigma may avoid treatment or future health are appointments (30,45) and have reported feeling bad about themselves and an inreased likelihood of avoiding exerise (45). Stigma an lead to embarrassment and/or shame, and shame an lead to dereased motivation (37) and nonattendane at strutured diabetes eduation (46). The label nonompliant is value-laden and represents an authoritarian patientprovider relationship. Nonompliant is a label that an travel with a person (47), for instane, in their hart or in onversations, so that providers have preoneived ideas about patients. Expetany theory has shown that when individuals are labeled, expetations are set that an beome self-fulfilling propheies (48,49). Beginning with their landmark study, Rosenthal and Jaobson (50) demonstrated the expetany effet in a variety of ontexts. This researh shows the expetany effet is not only important; it is a robust effet that ours in many situations, inluding business management (where the biasing effet is the expetations of employers about their employees), ourtrooms (where the biasing effet is the expetations about the defendant s guilt or innoene), and nursing homes (where the biasing effet is the expetation a resident will get better or worse). This effet has also been shown in athleti ability, where oahes expetations were set about the skill of the athletes (49). Expetany effets revealed four main fators of learning-related labeling in the lassroom setting (48). In a randomized ontrolled trial, where typial students were randomly labeled as spurters, hanges were seen in emotional limate, teaher behaviors, student opportunities to speak, and level of detailed feedbak. When teahers expeted students to do well, they were warmer toward them, gave them more diffiult study materials, gave them more opportunities to respond and/or ask questions, and provided more informative feedbak. The teahers expetations affeted learning outomes; students who were randomly labeled spurters performed better than nonspurters (48). If expetany theory is applied to the patient-provider relationship in diabetes, people labeled as nonompliant, poorly ontrolled, unmotivated, or unwilling, may find that these expetations beome true. Potential evidene for this effet may be seen in patient and provider resistane to initiation of insulin therapy. Several studies have found that about half of nurses and general pratitioners (50 55%) reported that they delay insulin therapy until absolutely neessary and are signifiantly more likely to do so when they pereive patients as less adherent, unwilling, or unontrolled (51 53). The presumption that patients will be nonompliant or unwilling may result in a self-fulfilling prophey. In fat, people with type 2 diabetes ommonly report being unwilling to start insulin (17 39%) (54 56). In a separate study, people who were given a new presription for insulin fell into two groups: those who started taking the insulin and those who did not. Those who did not start taking insulin were signifiantly more likely to blame themselves and believed their prior lak of suessful self-management aused the urrent need for insulin (54). This suggests that when providers label patients as nonompliant or unwilling and when patients see themselves as nonompliant, people with diabetes are less likely to be willing to start taking insulin. For some people, nonompliane may be a way of trying to gain ontrol over their own lives, yet this psyhologial protetion an atually lead to physial harm (57). There are many reasons for nonompliane in diabetes management (58,59), and the messages an be adjusted to reflet an understanding of these fators. The word adherene was used to replae ompliane in the 1990s; however, adherene has a similar meaning and may have a similarly negative onnotation. Therefore, neither ompliane nor adherene is onsistent with an empowerment, strengths-based approah in diabetes (57,60 62). The goal is to use language that is free from stigma (see Table 4). 3. Use Language That Is Strengths Based, Respetful, Inlusive, and Imparts Hope Strengths-based language fouses on what is working rather than what is wrong, missing, or abnormal. This approah indiates a belief in people and their apabilities, talents, abilities, possibilities, values, and hopes (7). Language that fouses on what is wrong, on the other hand, may eliit a sense of shame, an emotion assoiated with an intense physiologial response and that evokes a person s weakness rather than potential (18). Ward et al. (15) found that when physiians were pereived as disrespetful, insinere, or emotionless, Afrian Amerians with weight problems were less likely to engage in behavior hange or seek the help they need. Afrian Amerian study partiipants wanted health are providers to demonstrate respet, nonjudgment, and onern for their well-being (15). Language that is negative or judgmental an ontribute to diabetes distress (9). Diabetes distress is defined as all of the worries, onerns, and fears that are assoiated with a demanding and omplex disease like diabetes and the threat of possible ompliations (63). Diabetes distress is ommon (64,65) and independently assoiated with elevated A1C in diabetes (63,64,66,67). Health are professionals are enouraged to seek skills in attentive and empathi listening, sensitive verbal inquiry, and use of thoughtful and refletive ommentsdskills that are the hallmarks of good linial are (63). Fear of hypoglyemia and fear of not meeting blood gluose targets are ommon for people living with diabetes (24) and an ontribute to undue stress. Fear of hypoglyemia an lead to keeping blood gluose levels elevated for long periods of time. Health are professionals an use language that instills onfidene and enourages people to use their strengths to overome these fears and manage suessfully. Stress has a negative influene on the body in general (68,69) and even more so for those with diabetes. Health are professionals have an important role in the ontext of diabetes. As it is diffiult to separate language from ontext (6), negative language and messages an ontribute to a stressful disease experiene (9). Stress has an impat on blood gluose levels and self-are behaviors, and differenes in psyhosoial resoures inluding support and oping will affet a person s response to stress (70). Empowerment involves identifying needs, taking ation, and gaining mastery over issues that are self-identified as important (3). Language that is respetful, inlusive, and strengths based onveys an empowerment approah in diabetes

7 1796 Consensus Report Diabetes Care Volume 40, Deember 2017 eduation and linial are (71). Saying I empower patients so they will be ompliant is not onsistent with empowerment; language foused on goals identified by patients rather than imposed by health professionals is onsistent with empowerment. Everything that surrounds a person makes up their ontext. In the ase of people with diabetes, that inludes the words, attitudes, and behaviors of health are professionals. In fat, ontext may influene the outomes of medial treatments (6). Benedetti and Amanzio (72) explained that one of the most basi and ontrollable ontexts is words. Their researh examined the plaebo and noebo effets. People who reeived an intervention that had no therapeuti effet in a verbal ontext that was hopeful and trust induing had redued pain symptoms (plaebo effet), while those reeiving the intervention in a fearful and stressful ontext had inreased pain symptoms (noebo effet) (72). Awareness of language and ommuniation behavior an help health are professionals have more effetive onversations (15). A survey study asking patients about their experiene with health are providers at the time of diagnosis with type 2 diabetes (n 5 172) found that messages of hope, delivered right at diagnosis, have a lasting impat (at least 1 to 5 years) on patients attitudes and diabetes management behaviors and signifiantly mitigate diabetes distress (73). Using language that is strengths based, respetful, inlusive, and imparts hope an failitate more empowering, produtive ommuniation (see Table 4). 4.UseLanguageThatFosters Collaboration Between Patients and Providers The need for effetive patient-provider ommuniation is a ommon theme in the diabetes and health are literature (74 81). The ways in whih health are professionals interat with people who have diabetes an enourage or disourage engagement and ollaboration. Respetful and effetive ommuniation is the foundation of trusting relationships in health are (82). Aording to Broom and Whittaker (23), people s sense of identity may get disrupted when they have a disease suh as diabetes. A person s experiene of diabetes an influene their self-talk, for example, someone might say I m a bad diabeti, beause I don t eat how I m supposed to. This dialogue with the self (23) is influened by the words used by health are professionals, who are seen as knowledgeable and powerful. Communiation between patients and providers is essential to the suess or failure of these interations (5); Fleishman supports the notion that health are professionals are ethially responsible for periodially refleting on and ritiquing the language they use: what is lear is that [providers] and patients do not share a ommon language when talking about illness and disease (5). Language that evokes authority and implies a power differential, suh as naughty, heat, allowed/not allowed, an/ an t, should/shouldn t, good/bad, must/must not, and right/wrong may result in people with diabetes feeling as though they are being talked to like hildren (83). Ritholz et al. (80) found that people with diabetes are less likely to disuss self-are information beause of a fear of being judged and feeling shame. Arandomizedontrolledtrial(n 5 222) demonstrated a mean 1-point A1C lowering when people with type 2 diabetes were taught how to reframe self-blame using more neutral, fat-based messages (84). People naturally internalize the ompliane model by being involved in the health are system and a part of soiety, where there are long-held beliefs about disease and health. The language of health are providers, therefore, an have a tendeny to reinfore that model. Instead, the patient-provider relationship is an opportunity for mutual engagement, ollaboration, and dialogue (62). It is important for providers to ommuniate with patients that diffiulty reahing goals is not their fault; they are not to blame (85). Yelovih reommends approahing the patientprovider interation as a meeting of experts (79). Patient-provider ommuniation is diretly linked to how patients engage with and make the hanges reommended by health are professionals (8,76 78,86). Providers who reeived eduation on ollaborative ommuniation reported better patient self-management outomes (78). Trust in the health are professional is a ritial element of the patient-provider relationship that an also improve patient engagement and self-are (16,75). The goal is to use language that is onsistent with ollaborative interations between people with diabetes and health are professionals (see Table 4). 5. Use Language That Is Person Centered In 2001 the Institute of Mediine made a strong stand for supporting patiententered are. The Institute of Mediine defined patient-entered are as are that is respetful of and responsive to individual patient preferenes, needs, and values, and ensuring that patient values guide all linial deisions (87). Patiententered are has been in the literature for more than 50 years (88). More reently, however, efforts have been made to reognize the whole person and therefore transition to person-entered are in order to inlude more than just linial and medial needs and preferenes (89). Person-entered are involves a dynami, ollaborative relationship with relevant health are providers. Indiators onsistent with personentered are inlude quality of life, amelioration of symptoms, and satisfation (89). Language, an important part of this approah, ontributes to effetive ommuniation, whih relates to patient satisfation (88). Qualities of personentered are inlude support, ompassion, and aring. Suh qualities enourage patient ativation, whih leads to better outomes (88). Messages of support, ompassion, and aring an be ommuniated through the words health are providers hoose. Person-first language is an essential starting point for onveying respet (90), with its origin in the disability movement. Fleitas (91) suggested that defining people by their disease, for instane, diabeti, just beause it is semantially onvenient ought to give us pause. When the words or some disease statement preede the subjet of the sentene, an image is formed that prevents the listener or reader from thinking about the subjet any other way (91). She further suggested that desriptors suh as suffers from and vitim of an be soially destrutive to those with the disease. She desribed the linguisti landsape as being full of landmines that need to be aknowledged and defused (91). The Diabetes Attitudes, Wishes and Needs(DAWN)studiesexploredfators that influene ative diabetes management (92) and favored shifting from an

8 are.diabetesjournals.org Dikinson and Assoiates 1797 aute or ompliane model to a personentered approah (93). Kalra and Baruah (94) reommended implementing a ampaign toward hanging attitudes about diabetes. Raising awareness of the impat of language and adopting person-entered ommuniation ould be some of the first steps in suh a ampaign. By fousing on person-first language, itmaybepossibletoeliminatestereotypes, negative assumptions, and generalizations by respetfully addressing the whole individual; their disease is simply one part of their life experiene (95). Person-first language evolved largely from organizations that serve people with disabilities. Over time, person-first language has been applied to people with other onditions, diseases, or population harateristis and demographis, suh as medial diagnoses, age, and ethniity (96). The Amerian Psyhologial Assoiation has long endorsed the person-first perspetive in an effort to redue stigma, stereotyping, and prejudie toward people with disabilities; this applies to those working in linial pratie, researh, and eduation (96). Barnish (97) found that health are providers and researhers may be more likely than not to refer to people with disabilities in terms that emphasize the disability rather than the person (e.g., diabeti ). The Obesity Soiety formally adopted person-first language in For example, it is more aeptable to say person with obesity (98). As liniians and others provide are and servies to people with diabetes, it is important to reognize that possible biases and use of terminology may affet relationships with those who are served and ultimately the are they reeive. To date, there is not universal agreement on the use of person-first language (96,99), and there are organizations that espouse the use of identify-first language (e.g., blind person ), inluding the National Federation of the Blind (100). However, in diabetes, person-first language is more onsistent with having an ative role in self-management rather than being a passive reipient (9) (see Table 4). GAPS IN KNOWLEDGE IN LANGUAGE AND DIABETES There is a pauity of researh that diretly addresses questions about language in diabetes are and eduation. Most of the existing literature reports qualitative methods used to illuminate issues of language and the experiene of diabetes. There are several important questions that warrant further study. What is the relationship between language and stigma in diabetes? What is the effet of language in different types of diabetes, age-groups, and ultures? What is the role of expetany theory in diabetes? What is the impat of language in the media on people with diabetes? What is the effet of language on patient engagement/motivation and diabetes outomes? Does hanging the language of diabetes improve outomes? What is the effet of language on patient-provider relationships? What are effetive ways to teah health are professionals about language? CONCLUSIONS Language annot be separated from thought or experiene. Language is part of every person s ontext, and people reate meaning from the messages they hear. The paradigm of diabetes are and eduation is moving past an approah that views the health are provider as the expert who tells people with diabetes what to do. It is moving toward an approah where people with diabetes are the entral members of their are teams, experts on their experienes, and integral to the management of their disease. Diabetes professionals are working toward person-entered are that is based on respetful, inlusive, and empowering interations. Health are professionals have an opportunity to reflet on the language used in diabetes and adapt strengths-based, ollaborative, and person-entered messages that enourage people to learn about and take ation to manage this omplex disease. The ICD-9 Clinial Modifiation odes (ICD-9-CM odes) (101) linked with reimbursement inluded multiple odes for unontrolled diabetes. Despite the removal of the modifier unontrolled in the ICD-10-CM (102), the legay of the ICD- 9-CM system persists in medial reords. Influening ulture and removing negative labeling will take time and determination. The use of empowering language an help to eduate and motivate people with diabetes, yet language that shames and judges may be undermining this effort, ontributing to diabetes distress, and ultimately slowing progress in diabetes outomes. This artile serves as a starting point to aknowledge and avoid the potential pitfalls of the language used in diabetes. Its purpose is to engage health are professionals and those who prepare future health are professionals in a movement toward language that is onsistent with an empowerment approah. The language movement that began deades ago has reahed the diabetes ommunity and requires support and implementation from all health are professionals, researhers, writers, and eventually soiety at large to be suessful and sustainable. In addition, this artile an serve as a guidepost for those in the media who ommuniate health messages to onsider more arefully the language they use when writing about diabetes and other hroni diseases. It is also a all to ation for sholars to further study and report on the impat of language on people with diabetes. The task fore plans to follow up on this artile by reating a media style guide and resoures for health are professionals. The time has ome to reflet on the language of diabetes and share insights with others. Messages of strength and hope will signify progress toward the goals of eradiating stigma and onsidering people first. Aknowledgments. The authors would like to thank Sarah Odeh (Aquinox Pharmaeutials, formerly of Close Conerns) for her ontributions to the ontent of the manusript, Aliia MAuliffe-Fogarty (Amerian Diabetes Assoiation) for her review of the manusript, and Erika Gebel Berg (Amerian Diabetes Assoiation) for her assistane with reviewing and preparing the manusript. Duality of Interest. B.M. is employed by AstraZenea Pharmaeutials. K.L.C.: Close Conerns reports that several aademi institutions, government bodies, and pharmaeutial and devie ompanies in the diabetes field subsribe to the ompany s fee-based newsletter, Closer Look, and The diatribe Foundation reports that it reeives donations from a number of pharmaeutial and devie ompanies in the diabetes field. M.M.F. served as an advisory panel member for Eli Lilly and Sanofi. No other potential onflits of interest relevant to this artile were reported.

9 1798 Consensus Report Diabetes Care Volume 40, Deember 2017 Referenes 1. Shaffer R. Experts push to move beyond HbA1 as main measure of diabetes outomes [artile online], Endorine Today. Available from diabetes/news/print/endorine-today/% 7B7fdf1f8e-d b09d-406a4691d9ba% 7D/experts-push-to-move-beyond-hba1-asmain-measure-of-diabetes-outomes. Aessed 27 February Dmowska A, Brown A. How do we redue diabetes stigma and guilt? [artile online], diatribe. Available from how-do-we-redue-diabetes-stigma-and-guilt. Aessed 27 February Funnell MM. Patient empowerment: what does it really mean? Patient Edu Couns 2016; 99: Hardin C, Banaji MR. The influene of language on thought. So Cogn 1993;11: Fleishman S. I am...i have..., I suffer from...: A linguist reflets on the language of illness and disease. J Med Humanit 1999;20: Benedetti F. How the dotor s words affet the patient s brain. Eval Health Prof 2002;25: Saleebey D. The strengths perspetive in soial work pratie: extensions and autions. So Work 1996;41: Polonsky WH, Capehorn M, Belton A, et al. Physiian-patient ommuniation at diagnosis of type 2 diabetes and its links to patient outomes: new results from the global IntroDiaÒ study. Diabetes Res Clin Prat 2017;127: Dunning T, Speight J, Bennett C. Language, the diabetes restrited ode/dialet, and what it means for people with diabetes and liniians. Diabetes Edu 2017;43: Speight J, Conn J, Dunning T, Skinner TC; Diabetes Australia. Diabetes Australia position statement. A new language for diabetes: improving ommuniations with and about people with diabetes. Diabetes Res Clin Prat 2012;97: International Diabetes Federation. International Diabetes Federation Language Philosophy: Tehnial Doument. International Diabetes Federation, Brussels, Belgium, Amerian Diabetes Assoiation. Standards of Medial Care in Diabetesd2017. Diabetes Care 2017;40(Suppl. 1):S1 S Iverson C, Christiansen S, Flanigan A, et al. AMA Manual of Style. 10th ed. New York, Oxford University Press, 2007, p Dikinson JK, Maryniuk MD. Building therapeuti relationships: hoosing words that put people first. Clin Diabetes 2017;35: Ward SH, Gray AM, Paranjape A. Afrian Amerians pereptions of physiian attempts to address obesity in the primary are setting. J Gen Intern Med 2009;24: Dikinson JK. The experiene of diabetesrelated language in diabetes are. Diabetes Spetr. 25 Otober 2017 [Epub ahead of print]. doi.org/ /ds Berg FM. Choose sensitive, aurate terms. Healthy Weight J 1998;12: Chun H, Patrik VM, MaInnis DJ. Making prudent vs. impulsive hoies: the role of antiipated shame and guilt on onsumer self-ontrol. Adv Consum Res 2007;34: Volger S, Vetter ML, Dougherty M, et al. Patients preferred terms for desribing their exess weight: disussing obesity in linial pratie. Obesity (Silver Spring) 2012;20: Lydeker JA, Galbraith K, Ivezaj V, et al. Words will never hurt me? Preferred terms for desribing obesity and binge eating. Int J Clin Prat 2016;70: Meadows A, Daníelsdóttir S. What s in a word? On weight stigma and terminology. Front Psyhol 2016;7: Kendrik JM, Wilson C, Elder RF, Smith CS. Reliability of reporting of self-monitoring of blood gluose in pregnant women. J Obstet Gyneol Neonatal Nurs 2005;34: Broom D, Whittaker A. Controlling diabetes, ontrolling diabetis: moral language in the management of diabetes type 2. So Si Med 2004;58: Young-Hyman D, de Groot M, Hill-Briggs F, Gonzalez JS, Hood K, Peyrot M. Psyhosoial are for people with diabetes: a position statement of the Amerian Diabetes Assoiation [published orretions appear in Diabetes Care 2017; 40:287 and Diabetes Care 2017;40:726]. Diabetes Care 2016;39: Wang F, Shen X, Xu S, et al. Negative words on surgial wards result in therapeuti failure of patient-ontrolled analgesia and further release of ortisol after abdominal surgeries. Minerva Anestesiol 2008;74: Ritter A, Franz M, Puta C, Dietrih C, Miltner WHR, Weiss T. Enhaned brain responses to painrelated words in hroni bak pain patients and their moduation by urrent pain. Healthare 2016;4, Ott J, Aust S, Nouri K, Promberger R. An everyday phrase may harm your patients: the influene of negative words on pain during venous blood sampling. Clin J Pain 2012;28: Nathan DM, Genuth S, Lahin J, et al.; Diabetes Control and Compliations Trial Researh Group. The effet of intensive treatment of diabetes on the development and progression of long-term ompliations in insulin-dependent diabetes mellitus. N Engl J Med 1993;329: Dikinson JK. Commentary: the effet of words on health and diabetes. Diabetes Spetr 2017;30: Link BG, Phelan JC. Stigma and its publi health impliations. Lanet 2006;367: Dikinson JK, Lipman RD, O Brian CA. Diabetes eduation as a areer hoie. Diabetes Edu 2015;41: Liu NF, Brown AS, Younge MF, Guzman SJ, Close KL, Wood R. Stigma in people with type 1 or type 2 diabetes. Clin Diabetes 2017;35: Tak-Ying Shiu A, Kwan JJ, Wong RY. Soial stigma as a barrier to diabetes self-management: impliations for multi-level interventions. J Clin Nurs 2003;12: Browne JL, Ventura A, Mosely K, Speight J. I all it the blame and shame disease : a qualitative study about pereptions of soial stigma surrounding type 2 diabetes. BMJ Open 2013;3: e Vishwanath A. Negative publi pereptions of juvenile diabetis: applying attribution theory to understand the publi s stigmatizing views. Health Commun 2014;29: Browne JL, Ventura A, Mosely K, Speight J. I m not a druggie, I m just a diabeti : a qualitative study of stigma from the perspetive of adults with type 1 diabetes. BMJ Open 2014;4:e Vartanian LR, Shaprow JG. Effets of weight stigma on exerise motivation and behavior: a preliminary investigation among ollege-aged females. J Health Psyhol 2008;13: Shabert J, Browne JL, Mosely K, Speight J. Soial stigma in diabetes: a framework to understand a growing problem for an inreasing epidemi. Patient 2013;6: Gredig D, Bartelsen-Raemy A. Diabetesrelated stigma affets the quality of life of people living with diabetes mellitus in Switzerland: impliations for healthare providers. Health So Care Community 2016;25: Durso LE, Latner JD. Understanding selfdireted stigma: development of the weight bias internalization sale. Obesity (Silver Spring) 2008; 16(Suppl. 2):S80 S Pearl RL, Wadden TA, Hopkins CM, et al. Assoiation between weight bias internalization and metaboli syndrome among treatment-seeking individuals with obesity. Obesity (Silver Spring) 2017;25: Wadden TA, Didie E. What s inaname?patients preferred terms for desribing obesity. Obes Res 2003;11: Ellis S, Rosenblum K, Miller A, Peterson KE, Lumeng JC. Meaning of the terms overweight and obese among low-inome women. J Nutr Edu Behav 2014;46: Swift JA, Choi E, Puhl RM, Glazebrook C. Talking about obesity with lients: preferred terms and ommuniation styles of U.K. pre-registration dietiians, dotors, and nurses. Patient Edu Couns 2013;91: Puhl R, Peterson JL, Luedike J. Motivating or stigmatizing? Publi pereptions of weightrelated language used by health providers. Int J Obes 2013;37: Winkley K, Evwierhoma C, Amiel SA, Lempp HK, Ismail K, Forbes A. Patient explanations for non-attendane at strutured diabetes eduation sessions for newly diagnosed type 2 diabetes: a qualitative study. Diabet Med 2015;32: Holm S. What is wrong with ompliane? J Med Ethis 1993;19: Rosenthal R. Interpersonal expetany effets: a 30-year perspetive. Curr Dir Psyhol Si 1994;3: Weaver J, Filson Moses J, Snyder M. Selffulfilling propheies in ability settings. J So Psyhol 2016;156: Rosenthal R, Jaobson L. Pygmalion in the Classroom: Teaher Expetation and Pupils Intelletual Development. New York, Holt, Rinehart and Winston, Peyrot M, Rubin RR, Lauritzen T, et al.; International DAWN Advisory Panel. Resistane to insulin therapy among patients and providers: results of the ross-national Diabetes Attitudes, Wishes, and Needs (DAWN) study. Diabetes Care 2005;28: Nakar S, Yitzhaki G, Rosenberg R, Vinker S. Transition to insulin in type 2 diabetes: family physiians misoneption of patients fears ontributes to existing barriers. J Diabetes Compliations 2007;21: Haque M, Emerson SH, Dennison CR, Navsa M, Levitt NS. Barriers to initiating insulin therapy in patients with type 2 diabetes mellitus in publisetor primary health are entres in Cape Town. S Afr Med J 2005;95: