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A WHO key informant language survey of people with lived experiences of diabetes: Media misconceptions, values-based messaging, stigma, framings and communications considerations

Published:September 29, 2022DOI:https://doi.org/10.1016/j.diabres.2022.110109

      Abstract

      Aims

      This study aimed to learn from people with lived experiences of diabetes to raise the quality of diabetes communications.

      Methods

      An online key informant survey for people (18+) with a direct and/or adjacent (caregiver, friend, family-member etc.,) lived experience of diabetes. Through thematic analysis, we gathered insights on perceptions of media reporting on diabetes and communicating with accuracy, impact and without stigma. Descriptive analysis also investigated effective values for WHO to communicate diabetes with key audiences of policy-makers, funding partners and the general public.

      Results

      918 respondents in 58 WHO Member States were analysed. Participants identified five key themes requiring more appropriate consideration in the media: accurately defining diabetes types, over-emphasis on sugar and lifestyle, negative impacts of diabetes stigma, burden of costs (financial, personal and interpersonal) and mental health. Irrespective of audience, key values-based messages identified as important for WHO to convey included: ‘urgency’, ‘preventing suffering’, ‘improving wellbeing’ and ‘meaningful engagement’ of people with lived experience.

      Conclusion

      Learning from people with lived experience of diabetes identifies key diabetes communication considerations. Continued meaningful engagement of this group, including in WHO's work and the multistakeholder diffusion of this methodology to local contexts, could improve public discourse on diabetes and related policies.

      Keywords

      1. Introduction

      1.1 Background and acronyms, in line with WHO descriptors[

      Classification of diabetes mellitus. Geneva: World Health Organization; 2019. Licence: CC BY-NC-SA 3.0 IGO.

      ].

      T1DM: Type 1 Diabetes Mellitus.
      T2DM: Type 2 Diabetes Mellitus.
      GDM: Gestational Diabetes Mellitus.
      NCDs: Noncommunicable Diseases.
      In 2019, diabetes was the direct cause of 1.5 million deaths, with around half of all deaths (48%) due to diabetes occurring ‘prematurely’ (before age 70) [
      • World Health Organization
      Fact Sheet: Diabetes..
      ]. Diabetes is also a major challenge for countries to achieve Sustainable Development Goal 3.4 to reduce premature mortality from NCDs by one-third by 2030. Unlike reductions seen for other major NCDs, there has been a 3% increase in age-standardized mortality rates from diabetes between 2000 and 2019, and a 13% increase in lower-middle-income countries [
      • World Health Organization
      Fact Sheet: Diabetes..
      ].
      There is a growing recognition of the importance of language and communication of diabetes to present the global burden, provide health information, shape public perceptions and explain policy [

      Language Matters Foundation. Language Matters Diabetes. https://www.languagemattersdiabetes.com/; 2020. [accessed 16 September 2022].

      ]. Improving health literacy and promotion is a core workstream of the WHO Global Diabetes Compact, with the vision of reducing the risk of diabetes and ensuring that all people who are diagnosed with diabetes have access to equitable, comprehensive, affordable and quality treatment and care[
      • Hunt D.
      • et al.
      The WHO Global Diabetes Compact: a new initiative to support people living with diabetes.
      ,

      World Health Organization. The WHO Global Diabetes Compact. https://www.who.int/initiatives/the-who-global-diabetes-compact;2022 [accessed 16 September 2022].

      ]. WHO’s Strategic Communications Framework also identifies accessibility as a core principle of effective communication[

      World Health Organization. Principles for effective communication: accessible. https://cdn.who.int/media/docs/default-source/infographics-pdf/communicating-for-health/accessible.pdf?sfvrsn=7495ca8b_2;2022 [accessed 16 September 2022].

      ].
      The language WHO uses to communicate about diabetes in both health information and technical assistance is critical, including researching what information needs to be provided to key political and public audiences. Learning from people with lived experiences can improve efforts to explain diabetes, related complications, policies and programmes in an accurate, impactful, and non-stigmatizing way. Such learnings could improve outcomes for people with diabetes, while also shifting community attitudes and perceptions.
      Feedback from a 2021 WHO informal consultation for people with lived experience of diabetes indicates WHO language may inadvertently perpetuate stigma. As examples, for many participants, the 100th anniversary of the discovery of insulin was a reminder of grief and missed opportunity as much as celebrating a life-changing medical discovery. Participants expressed an unwillingness to be referred to as ‘patient’ or ‘person with’, particularly among those with T1DM, but rather ‘people living with…’, and noted that prioritizing messaging on prevention and behaviour change may affect health-seeking behaviours, and falsely create the impression that T1DM, and all instances of T2DM, are preventable through modifiable risk factors.
      The organization has been criticized for social media assets associating diabetes with sugar consumption in 2019 and pejoratively portraying a person at risk of diabetes on World Diabetes Day 2021 (Fig. 1). Although not intending to stigmatize people living with or at risk of diabetes, stakeholder consultations have made it clear that the WHO must improve its use of language and diabetes.
      Figure thumbnail gr1
      Fig. 1WHO social media assets criticised for stigmatizing diabetes.
      Attention to diabetes language is not new. Acting on decades of sustained advocacy from people with lived experiences of diabetes, Diabetes Australia formalised the importance of diabetes communication in a 2011 position statement[

      Diabetes Australia. Position Statement. A new language for diabetes. https://www.diabetesaustralia.com.au/wp-content/uploads/Language-position-statement-2016.pdf;2016 [accessed 16 September 2022].

      ], since followed elsewhere[
      • Cooper A.
      • et al.
      Language matters. Addressing the use of language in the care of people with diabetes: position statement of the English Advisory Group.
      ,
      • Dickinson J.
      • et al.
      The Use of Language in Diabetes Care and Education.
      ,
      • Banasiak K.
      • et al.
      Language Matters – A Diabetes Canada Consensus Statement.
      ]. The ‘Language Matters’[

      Language Matters Foundation. Language Matters Diabetes. https://www.languagemattersdiabetes.com/; 2020. [accessed 16 September 2022].

      ,

      NHS England. Language Matters: Language and diabetes. https://www.england.nhs.uk/publication/language-matters-language-and-diabetes/; 2018 [accessed 16 September 2022].

      ] publication series provides practical examples of language to encourage positive conversations with and about people living with diabetes. Language Matters recommends avoiding problematic or vague terminology; using empowering, respectful and strengths-based language; and considering judgement and stigma.
      Based on research from social psychology and cognitive linguistics and used widely in environmental and climate change advocacy, values-based messaging is an emerging communication practice for building public and policy support. It “involves engaging people’s deeply-held values to motivate concern and action”[

      VicHealth. Values-based messaging for health promotion. https://www.vichealth.vic.gov.au/media-and-resources/hpcomms; 2020. [accessed 16 September 2022].

      ], and focuses not only on information, but the values and principles framing such information. Grey literature has explored values-based messaging for alcohol[

      VicHealth. Values-based messaging for health promotion. https://www.vichealth.vic.gov.au/media-and-resources/hpcomms; 2020. [accessed 16 September 2022].

      ] and obesity[

      Obesity Health Alliance. Health first. Talking about child obesity. http://obesityhealthalliance.org.uk/framing-child-obesity/; 2020. [accessed 16 September 2022].

      ] policies as NCD risk factors, and on public health more widely[

      FrameWorks. Public Health Reaching Across Sectors: Strategies for Communicating Effectively about Public Health and Cross-Sector Collaboration with Professionals from Other Sectors. https://www.frameworksinstitute.org/publication/public-health-reaching-across-sectors-strategies-for-communicating-effectively-about-public-health-and-cross-sector-collaboration-with-professionals-from-other-sectors/; 2019. [accessed 16 September 2022].

      ,

      FrameWorks. Framing the Foundation of Community Health. https://www.frameworksinstitute.org/toolkit/framing-the-foundation-of-community-health/;2021. [accessed 16 September 2022].

      ]. Recent global WHO informal consultations with people living with NCDs highlights the importance of positive, accessible, contextually- and culturally-specific values to engage diverse groups[

      World Health Organization. Nothing for us, without us. Opportunities for meaningful engagement of people living with NCDs: meeting report. Geneva: World Health Organization; 2021. Licence: CC BY-NC-SA 3.0 IGO.

      ].
      Informed by these learnings, and the benefits of engaging people with lived experiences of diabetes, a key informant survey was launched to raise the quality of WHO diabetes communications, enhance advocacy efforts and more discuss policy interventions with impact and without stigma.

      2. Subjects, materials and methods

      This study targeted people over the age of 18 with direct (living with) and/or adjacent (caring for someone living with, having a friend or family member living with, or working in a personal or professional capacity) experience of diabetes. It sought to gather insights on a) respondent perceptions of reporting of diabetes in all media they consume and b) effective values-based frames for WHO to adopt when communicating diabetes with: policy-makers; stakeholders interested in funding work on diabetes; and the general public.
      Using insights from the wider literature, WHO experiences of engaging persons living with diabetes and other NCDs, and previous WHO NCD surveys, an online key informant survey was designed by WHO staff and consultants at Headquarters and Regional Offices. Multiple persons living with diabetes were invited to contribute to the concept note and draft survey, and to pilot test the draft survey. This cocreation process led to constructive changes and a final draft. The structure of the survey and mechanism for informed consent are available in a supplementary file.
      The survey was run on the WHO software platform DataForm from 01 to 28 February 2022 in English and Chinese. Chinese responses were translated in Microsoft Excel and validated where appropriate. In line with previous WHO surveys, a ‘key informant’ approach invited the participation of people with lived experiences of diabetes who previously engaged in WHO diabetes-related work, who were then encouraged to share the survey through their networks.
      In total, 918 responses from people living in 58 WHO Member States were eligible for analysis (Table 1). Responds were considered eligible if they progressed through the survey to answer questions exploring aims a) or b) as described above. While some drop-offs occurred through the survey, at least 708 respondents completed the values-based messaging questions.
      Table 1Respondent demographic data.
      TableRespondents self-identifying
      Direct experience of diabetes (noting respondent can have both direct and indirect)804
      Respondents living / having lived with T1DM617
      Respondents living /having lived with T2DM175
      Respondents living / having lived with another form of diabetes22 GDM

      11 another type
      Adjacent experience of diabetes (noting respondent can have both direct and indirect)421
      Gender balance672 Female

      219 Male

      13 Non-binary

      5 Prefer not to say

      4 Gender fluid

      4 Other
      Age: average (minimum–maximum)39.0 (18–76)
      Income status of countries where respondents were living (World Bank country classifications by income, 2021–2022

      The World Bank. World Development Indicators: The World by Income and Region. https://datatopics.worldbank.org/world-development-indicators/the-world-by-income-and-region.html; 2022. [accessed 16 September 2022].

      )
      68.6 % HIC

      6.2 % UMIC

      24.5 % LMIC

      0.7 % LIC
      The results were analysed using thematic analysis. Two researchers (DH and KL) read each response and created an initial coding framework. Guided by Braun and Clarke’s[
      • Braun V.
      • Clarke V.
      Using thematic analysis in psychology.
      ] iterative approach to psychology research, KL further iteratively refined this code, with DH conducting a secondary review of a sample of responses. With the sampling approach not designed to yield population-representative data, and the strong overrepresentation of women and respondents living with T1DM, the decision was taken to not attempt country or demographic comparisons. Notwithstanding, anonymized data are available for WHO to inform national diabetes responses. To anonymize respondent quotes, we have categorized ages and removed references to gender. To strengthen legibility, we used parentheses to explain misspellings and keep consistency in diabetes descriptors.
      Twelve values-based messages were tested, identified from existing literature, discussions among WHO personnel and language from NCD civil society communications. These values stated action on diabetes is: ‘a human right’, ‘common sense’, ‘cost-effective’, ‘empowering’, ‘equitable’ or ‘urgent’; means ‘social justice’ or ‘meaningful engagement’; brings ‘dignity’; has been ‘inadequate’; prevents ‘suffering’; and improves ‘wellbeing’. Respondents were asked to rank the importance of WHO using each value when communicating about diabetes to: a) policy-makers, b) partners interested in funding work on diabetes and c) the general public. Results are described using descriptive statistics, using a 5-point Likert scale of importance from ‘1′ (not at all important) to 5 (very important).

      3. Results

      The results revealed several themes related to how respondents perceived diabetes is portrayed in the media, and highlighted opportunities to improve this portrayal. Below, we provide more information on the most frequently-reported themes.

      3.1 Theme: Defining diabetes

      Respondents felt there was insufficient differentiation in media between diabetes types, between T1DM and T2DM (n = 631). Respondents expressed difficulties when all forms of diabetes are grouped together, given their breadth of causes and risk factors. Risk factors and the appropriate prevention of T2DM (n = 49) were cited as things people would like to see more reported in the media. Similarly, several respondents (n = 43) suggested a need for more awareness of T1DM signs and symptoms. Interestingly, emphasis on T2DM being a condition caused by lifestyle choices was also cited by those with T1DM, including some instances of stigmatising language when explaining the need to separate the two. The importance of understanding that diabetes, in particular T1DM, is not always related to lifestyle or diet, was frequently cited:“I did nothing to cause my diabetes. I couldn’t have prevented it. I can’t cure it.”
      - Person living with T1DM, age 25–29, Canada.
      “Most information in the media is regarding Type 2, and very often does not specify that - they simply say 'diabetes'. This causes huge confusion and issues for T1D's and results in many situations where we have to explain that it is an autoimmune condition and not caused by lifestyle. As a T1D[M], I often feel judged because most people believe diabetes as a whole is caused by poor lifestyle. It needs to be made very clear which type is being talked about, and the difference between causes made clear.”
      - Person living with T1DM, age 25–29, United Kingdom.

      3.2 Theme: Sugar and lifestyle

      Respondents consistently reported a perception in the media that diabetes is caused by sugar, eating too much junk food and/or making poor lifestyle choices (n = 458). For people with T1DM, an autoimmune disease, this was particularly concerning as it led to others making assumptions about the role their decisions made in their diagnosis. For those living with T2DM, this was also mentioned as a misconception that only those who ate poorly and did not exercise would get the condition.“As soon as diabetes come[s] up the first thing people assume is that the person is overweight and unable to control their eating impulses.”
      - Person with GDM, age 35–39, United States of America.
      Many respondents living with T1DM expressed frustration at the assumption that they had brought diabetes on themselves by how they ate or by being lazy. As two examples, respondents noted having been told ‘you don’t look like someone with diabetes’ or ‘you’re too skinny to have diabetes.’.
      This theme also included multiple responses about how the belief that “sugar causes diabetes” is concerning (n = 228). For those living with T1DM, it has led to stigma and even to people attempting to ‘police’ what they eat. Fat-shaming or weight-shaming was also mentioned by those with both type 1 and type 2 diabetes.
      Many respondents with diabetes noted that confusing film and TV presentations of the relationship with sugar and diabetes can be medically dangerous (n = 78). Respondents cited examples of characters with diabetes being treated with insulin for having low blood sugar: an incorrect and potentially life-threatening response. Media popularization of incorrect management could have severe real-world consequences:“I’m terrified of having a low in public and being injected with insulin by a well-meaning clueless stranger who has been inundated with “sugar bad” messaging.”
      - Person with T1DM, age 30–34, United States of America.

      3.3 Theme: Stigma, shame and blame

      Respondents felt that diabetes stigma, shame and blame are widely prevalent in the media (n = 369). Many respondents felt that media often portrayed every-one with diabetes as being obese, overweight, (n = 47) lazy or at fault for causing their diabetes, regardless of the type of diabetes they had or the other factors that can lead to a diabetes diagnosis. This led to the feeling that diabetes is a ‘moral failing’ and something for which the person should be blamed. There were also many respondents who reported that jokes about diabetes were frequent and led to increased stigma and stereotypes (n = 39). As respondents noted, such jokes are not appropriate when talking about someone with cancer or HIV and should not be accepted for those with diabetes. The examples below discuss how stigma, shame and blame are experienced because of negative stereotypes about the causes of diabetes:“I often thought that having diabetes complications were my mistakes for not taking care [of] my self strictly, the blame and shame started to fill the mind which resulted [in] hesitancy on treating my diabetes complications further.”
      - Person with T1DM, age 35–39, Indonesia“In media, a lot of people assume that diabetes is centralized around the weight of a person, leading to mockery, misunderstanding, and stigma surrounding diabetics that stems from fatphobia and ableism. When they hear that type 2 diabetics are primarily fat people, it is then assumed that they got diabetes BECAUSE they're fat or poor dieting choices, which is disingenuous and unfair.”
      - Person with T1DM, age 18–24, United States of America“I mostly see a stereotypical representation of type 2 diabetes in the media, with general comments about diabetes being a life style disease caused by lack of exercise and being over-weight. Even the WHO were guilty of this during diabetes awareness month, posting an image of a fat 'couch potato' to portray someone with diabetes. There needs to be better representation of the different types of diabetes, causes, treatments and the burden of living with the disease.”
      - Person with T1DM, age 50–54, United Kingdom
      While those living with T2DM were underrepresented in this survey, respondents also expressed concerns about stigma. Some also noted the misconception that T2DM is a disease of the rich and/or the lazy. Many felt the media mislabelled it as a ‘death sentence’, affecting how they perceived themselves. Alternatively, respondents indicated a resistance to disclosing their condition to other people for fear of the stigma they will experience, or feeling burdensome to their community.“A member of our group once said [they do] not let other people outside her family know that [they have] diabetes… because such people hold on to the belief that people bring diabetes onto themselves.”
      - Person caregiving for someone living with diabetes, age 35–39, Kenya.“Since my diagnosis, I feel guilty that I let myself become a diabetic and angry that my doctor didn't screen for it sooner. Now I feel so stigmatized that I haven't told anyone about my diagnosis, including my husband.”
      - Person with T2DM, age 60–64, Canada.“I feel like diabetes is portrayed as someone's fault, a disease based on being fat, and often a moral failing. It's “tragic” or comedic. Not a chronic life long illness.”
      - Person with T2DM, age 35–39, United States of America.“I overheard people ta[l]king that people living with diabetes are a burden to the country.”
      - Person with T2DM, age 45–49, Bhutan.

      3.4 Theme: Costs (financial)

      The cost of living with diabetes was also highly represented in responses to the question of what the media should do more to recognize (n = 240). Many respondents suggested a relationship between the cost of insulin, technology and supplies for diabetes care and mental health struggles:“The media leaves out the financial burden of t1d for people who live in countries without universal healthcare (for ex, the USA.) One of the most difficult parts about having t1d in the USA is the financial burden and constantly wondering if I will have enough money to get the supplies and insulin to stay alive. I do not see this portrayed in the media at all. Again, this leads the general public to not be aware that this is happening/not be aware that their neighbors, family, and friends with t1d are struggling to afford essential medical care every day.”
      - Person with T1DM, age 25–29, United States of America.“The media just acts like diabetes is only about avoiding sugar, but that's not true. Even if it was, that would account for a fraction of what having diabetes means. In America, having diabetes means being constantly worried that I'm going to lose my job and insurance and die from insulin rationing”.
      - Person with T1DM, age 25–29, United States of America.“Only one thing I need to say that medicines for diabetes becoming costly and it's not feasible to buy by people who are not able to afford. I request WHO to take interest and try to [regularize] prices globally on Diabetes and NCDs.”
      - Person with T2DM, age 40–45, India“How expensive are the supplies. How expensive is being sick.”
      - Person with T2DM, age 35–40, Mexico

      3.5 Theme: Costs (interpersonal) and mental health impacts

      The toll diabetes takes on people’s mental health (n = 209) was not seen as sufficiently showcased in the media. Many respondents expressed that people without diabetes do not understand the all-encompassing, “24/7” nature of this condition and how much that impacts their lives (n = 244). Respondents wished diabetes was better understood and discussed appropriately and sensitively. In many cases, stress and emotional impacts were interlinked with ever-present financial costs of diabetes management. Diabetes burnout and eating disorders were also acknowledged, alongside the multitude of factors that can affect daily life with diabetes:“Mental Health and diabetes is hardly ever mentioned in the media. There is a link between the two and yet this is largely ignored. I can guarantee that if a person is struggling with mental health issues that their diabetes control will not be optimal.”
      - Person with T1DM, age 25–29, South Africa.“[Y]ou are much more than your diabetes, it is not your fault you got sick, it is normal to have hard days and be overwhelmed (more positive messages about mental health and diabetes), there is no such thing as a perfect diabetic.”
      - Person with T1DM, age 18–24, Bosnia and Herzegovina.“The mental aspect of having diabetes is neglected in the media as well - few media outlets ever mention the extreme mental weight of having a 24/7, 365 disease. When I see diabetes in the media, all that is ever mentioned is food and exercise, importance of making healthy choices, etc. This makes diabetes management seem extremely simple - and therefore the general public believes this as well. They don't mention the 40 + factors that can affect blood glucose levels, burnout, etc. and act like diet and exercise is the end all, be all solution to life with diabetes.”
      - Person with T1DM, age 18–24, United States of America.“The daily struggles of Diabetics are not represented in the media…Very little is published on the effects of diabetic burnout.”
      - Person with T1DM, age 40–45, United Arab Emirates.

      3.6 Additional themes

      While not as frequently reported, several other topics raised important points that contextualised our main themes, and we felt it pertinent to briefly describe them here. Many respondents (n = 95) stated there was no good information about diabetes in the media where they lived, or only information during Diabetes Awareness Month (n = 5). Others (n = 22) mentioned untested or ineffective “scams”, myths or products aimed at people with diabetes, which could be dangerous.“I don't [see] any public message/ billboards anywhere in my country saying about it.”
      - Person with T2DM, age 60–65, Rwanda.
      Respondents also felt like there are good messages in the media around risk factors and symptoms. When asked for good messages they had seen, many named organizations providing peer support for people with diabetes through groups or social media. Language Matters was mentioned several times as a helpful resource for improving media communication.

      3.7 Values-based messaging

      The set of questions on values-based messages that WHO should communicate were answered by a minimum of 708 and a maximum of 756 respondents (responses being optional). All 12 values put forth to respondents averaged a respondent score of between ‘important’ (n = 4) and ‘very important’ (n = 5) for WHO to communicate with policy-makers (Fig. 2, partners interested in funding work on diabetes (Fig. 3), and the general public (Fig. 4).
      Figure thumbnail gr2
      Fig. 2Importance of WHO communicating values with policy-makers.
      Figure thumbnail gr3
      Fig. 3Importance of WHO communicating values with funding partners.
      Figure thumbnail gr4
      Fig. 4Importance of WHO communicating values with the general public.
      ‘Urgency of diabetes action’ was considered the most important value irrespective of audience (n = 4.81 for WHO to communicate with policy-makers, n = 4.82 funding partners, n = 4.81 general public). ‘Preventing suffering’ (all-audience average n = 4.76), ‘improving wellbeing’ (all-audience average n = 4.75) and ‘meaningful engagement’ (all-audience average n = 4.72) were identified as within the top-five most important values regardless of audience. Taking a ‘human-rights based approach’ and emphasizing the ‘cost-effectiveness’ of diabetes interventions were perceived as relatively more important for policy-makers than other audiences. ‘Social justice’, ‘dignity’ and ‘empowerment’ averaged as least impactful, though noting these still scored as important.

      4. Discussion

      The insights from respondents featured in this paper illustrate the rich expertise and perspectives that people with lived experiences can bring to inform diabetes communication. These insights can improve communications on diabetes and related risk factors in an empowering, accurate and impactful way.
      While the themes presented in this study do not definitively describe effective diabetes communication practices, and we note Language Matters[

      Language Matters Foundation. Language Matters Diabetes. https://www.languagemattersdiabetes.com/; 2020. [accessed 16 September 2022].

      ] and dStigmatize[

      dStigmatize. Language Guide. https://www.dstigmatize.org/resources/language-tools/;2022. [accessed 16 September 2022].

      ] have created taxonomies of language to encourage or avoid when describing diabetes, we identify a series of themes crucial to consider when reporting on diabetes and policy responses. Our findings align with previous research, recommending approaches that are neutral, non-judgmental, strengths-based, inclusive, evidence-based, collaborative between people with diabetes and providers, person-centred[
      • Dickinson J.
      • et al.
      The Use of Language in Diabetes Care and Education.
      ], show ‘CARE’ (curiosity, accuracy, respect and empathy) and remove ‘BIAS’ (blame, irreverence, authority, stigma)[
      • Speight J.
      • et al.
      Our language matters: Improving communication with and about people with diabetes. A position statement by Diabetes Australia.
      ] are recommended.
      Respondents most-frequently reported a failure in media to explain that different types of diabetes exist, and they require different medical responses. Media representations often present diabetes (in totality) as developing only by poor lifestyle, habits and deficiencies that can be blamed, adding to stigma. These simplistic representations may also draw false dichotomies between diabetes types: while T1DM is never preventable nor related to lifestyle, there are also instances when T2DM is not preventable or lifestyle-related. Rather, diabetes is influenced by factors including genetics, pregnancy, social and commercial determinants, and health system and public health contexts. If left unaddressed, the differences between the realities of diabetes and misconceptions held by those outside the lived experience community, may undermine how societies and policy-makers understand and respond to diabetes.
      Respondents identify presenting diabetes as a lifestyle condition being problematic and inaccurate. Focusing on lifestyle ‘control’, at the expense of other interventions, can place inappropriate burden on individuals where health system interventions are required[
      • Broom D.
      • Whittaker A.
      Controlling diabetes, controlling diabetics: moral language in the management of diabetes type 2.
      ]. Control also interlinks with stigma, implying ‘poor control’ is a personal deficiency. Such framings may also distract from non-modifiable risk factors for diabetes, and the policy responses these factors require. Perhaps surprisingly given the frequency of responses, little research explores how people living with diabetes conceptualize sugar as a self-management tool in the treatment of hypoglycemia, or the nuances of how sugar and diabetes is described and understood in public discourse.
      Social stigma is a concern for people with diabetes, felt in many domains of life as a source of distress, poor psychological well-being and sub-optimal self-care[
      • Schabert J.
      • et al.
      Social stigma in diabetes : a framework to understand a growing problem for an increasing epidemic.
      ,
      • Puhl R.
      • et al.
      Weight stigma and diabetes stigma in U.S. adults with type 2 diabetes: Associations with diabetes self-care behaviors and perceptions of health care.
      ]. Our findings align with wider literature that diabetes stigma pervades through blame, fear, disgust[
      • Schabert J.
      • et al.
      Social stigma in diabetes : a framework to understand a growing problem for an increasing epidemic.
      ], the enforcement of social ‘norms’, forcing people to hide their diabetes status[
      • Browne J.
      • et al.
      'I call it the blame and shame disease': a qualitative study about perceptions of social stigma surrounding type 2 diabetes.
      ,

      Browne J., et al. 'I'm not a druggie, I'm just a diabetic': a qualitative study of stigma from the perspective of adults with type 1 diabetes. 2014 Jul 23;4(7):e005625. doi: 10.1136/bmjopen-2014-005625.

      ] or avoid screening and medical intervention[
      • Speight J.
      • et al.
      Our language matters: Improving communication with and about people with diabetes. A position statement by Diabetes Australia.
      ]. Poorer quality conversations with health professionals can also be a cause of stigma[
      • Puhl R.
      • et al.
      Weight stigma and diabetes stigma in U.S. adults with type 2 diabetes: Associations with diabetes self-care behaviors and perceptions of health care.
      ,
      • Browne J.
      • et al.
      'I call it the blame and shame disease': a qualitative study about perceptions of social stigma surrounding type 2 diabetes.
      ,

      Browne J., et al. 'I'm not a druggie, I'm just a diabetic': a qualitative study of stigma from the perspective of adults with type 1 diabetes. 2014 Jul 23;4(7):e005625. doi: 10.1136/bmjopen-2014-005625.

      ]. Our findings also indicate stigma can exist as ‘social utility’, including feeling a burden on society. In efforts by those living with T1DM to distance themselves from those with T2DM, this may inadvertently exacerbate stigma towards T2DM. The overrepresentation of T1DM advocates in this survey reflects previous WHO engagements. Changing the way diabetes is discussed may create a more supportive environment for people living with T2DM to actively engage in the framing of diabetes.
      Financial and interpersonal costs were a pervasive theme. This aligns with research on the psychosocial burden of diabetes costs, including financial costs to families and related guilt, time costs to secure insurance coverage, and opportunity costs to physical and mental wellbeing[

      Addala A., et al. Cost considerations for adoption of diabetes technology are pervasive: A qualitative study of persons living with type 1 diabetes and their families. Diabet Med 2021; Oct;38(10):e14575. doi: 10.1111/dme.14575.

      ,
      • Gao C.
      • et al.
      Patients' Perspective About the Cost of Diabetes Management: An Analysis of Online Health Communities.
      ,
      • Grigorian E.
      • et al.
      Financial Barriers in Emerging Adults With Type 1 Diabetes: A Qualitative Analysis.
      ]. Similarly, the mental health and personal impacts of diabetes cannot be overstated. This distress is both ‘internal’ - from fears, anxieties, fatigue and ignorance - and ‘external’, from healthcare services, diet, medication, monthly blood glucose checks, relationships and financial concerns[
      • Arifin B.
      • et al.
      'Diabetes is a gift from god' a qualitative study coping with diabetes distress by Indonesian outpatients.
      ]. Linguistic barriers, ethnicity and lower education have been associated with lower self-monitoring of blood glucose, suggesting the need for culturally-sensitive, multilingual diabetes education and care[
      • Karter A.
      • et al.
      Self-monitoring of blood glucose: language and financial barriers in a managed care population with diabetes.
      ].
      Our findings have several implications for WHO, and other relevant stakeholders, when communicating on diabetes. First, findings revealed key sensitivities for WHO to consider in the communication process. With ‘health promotion’ one of six workstreams of the WHO Global Diabetes Compact[

      World Health Organization. The WHO Global Diabetes Compact. https://www.who.int/initiatives/the-who-global-diabetes-compact;2022 [accessed 16 September 2022].

      ], findings will be integrated with supporting WHO Member States to design appropriate diabetes education and literacy interventions. Findings will also inform a forthcoming WHO Framework for Meaningful Engagement of People Living with NCDs and Mental Health Conditions [

      World Health Organization. Nothing for us, without us. Opportunities for meaningful engagement of people living with NCDs: meeting report. Geneva: World Health Organization; 2021. Licence: CC BY-NC-SA 3.0 IGO.

      ,
      • World Health Organization
      Co-creating the WHO Framework for Meaningful Engagement of People Living with Noncommunicable Diseases and Mental Health conditions.
      ].
      Second, the findings highlight the need for capacity building from WHO among those responsible for diabetes media reporting. As two examples, WHO runs training sessions for journalists to report on NCDs, and information sessions for Member States to provide technical assistance on NCD governance and technical work. Learnings can be embedded into this capacity building and standard operating procedures across WHO Headquarters, Regional and Country Office level. For WHO Member States and stakeholders, stigma could also be actively addressed in national marketing safeguards and codes of practice.
      Third, learning from lived experiences of diabetes is essential for media messaging and policy advocacy, as public narratives shape political discourse and policy design [

      World Health Organization. Improving diabetes outcomes for all, a hundred years on from the discovery of insulin: report of the Global Diabetes Summit. Geneva: World Health Organization; 2021. Licence: CC BY-NC-SA 3.0 IGO.

      ]. These learnings could also be transferrable to learning from people with lived experiences of other NCDs, and wider insights on health could be gained. For example, in HIV/AIDS, a language compendium has been developed to protect appropriate language and descriptions in UN documents [

      Love Alliance. HIV/AIDS Language Compendium. https://hivlanguagecompendium.org/?s=09;2022 [accessed 16 September 2022].

      ], while WHO has recently launched a NCD language survey for people with lived experiences of cancer [
      • Das M
      New survey and initiatives to support patients living with cancer. 2022; Online First..
      ].
      Fourth, as is reasonable to expect, respondents had contesting views of helpful or unhelpful diabetes messaging. Where some respondents conceptualized diabetes as a disability, others opposed this framing. Success stories were seen as empowering, but also underestimating the seriousness of diabetes. While several respondents use “diabetic” to identify themselves or others, others avoid being ‘labelled’ by their disease. These learnings demonstrate that while there is no ‘one size fits all’, and attitudes towards diabetes language and frames vary between and within national contexts, replicating this study could yield such context-specific insights. This could be delivered in collaboration between WHO, government ministries, civil society and lived experience groups.
      Fifth, there is a valuable role for values-based messaging research in WHO's diabetes communication. While all 12 values tested strongly, urgency, preventing suffering, improving wellbeing and meaningful engagement were identified as particularly important values for diabetes action, irrespective of audience. Identifying the most compelling values to frame diabetes can improve public understanding of diabetes, make a compelling case for health financing, and increase the political prioritization of diabetes.

      4.1 Limitations

      There were five key limitations to this study.
      First, as a key informant survey initially distributed to people with a lived experience of diabetes previously been engaged by WHO on diabetes-related work, findings reflect a selection bias: of a group likely to have knowledge of diabetes information, evidence, policy experience and/or political advocacy, rather than any population-representative sample.
      Second, as witnessed in previous WHO engagement of people living with diabetes, respondents were disproportionately women, from a high-income nation, and living with T1DM. Given our high-income sample, we overlook issues identified as important elsewhere such as the role of divinity[
      • Juárez-Ramírez C.
      • et al.
      The importance of the cultural dimension of food in understanding the lack of adherence to diet regimens among Mayan people with diabetes.
      ], cure-seeking behaviours[
      • Lan L.L.
      • et al.
      Social Influences of Help-Seeking Behaviour Among Patients With Type 2 Diabetes Mellitus in Malaysia.
      ,

      Hjelm., K and Atwine, F. Health-care seeking behaviour among persons with diabetes in Uganda: an interview study. BMC International Health and Human Rights. 2011;11. https://doi.org/10.1186/1472-698X-11-11.

      ] including spirituality and faith healing[
      • Arifin B.
      • et al.
      'Diabetes is a gift from god' a qualitative study coping with diabetes distress by Indonesian outpatients.
      ,

      de-Graft Aikins A. Healer shopping in Africa: new evidence from rural-urban qualitative study of Ghanaian diabetes experiences. BMJ. 2005 Oct 1;331(7519):737. doi: 10.1136/bmj.331.7519.737.

      ], considerations for people consuming traditional diets[
      • Juárez-Ramírez C.
      • et al.
      The importance of the cultural dimension of food in understanding the lack of adherence to diet regimens among Mayan people with diabetes.
      ], and cultural continuity for people living with diabetes in First Nations communities[
      • Oster R.
      • et al.
      Cultural continuity, traditional Indigenous language, and diabetes in Alberta First Nations: a mixed methods study.
      ].
      Third, and by extension, an online-only survey excludes people likely to have lower digital health literacy or not be literate in English or Chinese. External research also notes translation challenges in diabetes research with non-English speaking populations, acknowledging translation is interpretive and cultural, not merely a direct message transfer from language to language[
      • Al-Amer A.
      • et al.
      Language translation challenges with Arabic speakers participating in qualitative research studies.
      ].
      Fourth, all media were considered within our definition of media representations. This generalizes that certain media platforms or consumption patterns may cause unique challenges. For example, character limits and peer-to-peer communication on social media may create susceptibility to misinformation. Finally, context is important as well as language, with body language, tone and attitude all important factors in empathetic diabetes communication[
      • Speight J.
      • et al.
      Our language matters: Improving communication with and about people with diabetes. A position statement by Diabetes Australia.
      ].
      Fifth, all 12 values around which to frame diabetes received an average score of between ‘important’ and ‘very important’. While this shows every value frame tested is likely to be beneficial, comparisons between values are limited. Notwithstanding, a core set of important values emerged irrespective of audience.

      4.2 Considerations for WHO and all stakeholders

      Learning from people with lived experiences can improve public and political discourse towards diabetes and related policy responses. Key themes to consider for diabetes communciation include defining diabetes; stigma, shame and blame; sugar and lifestyle; cost (financial and interpersonal); and mental health impacts, among others, are important considerations for WHO and others when communicating diabetes in the media. Respondents identified a consistent set of values, primarily the urgency of action needed, as important for WHO to convey when communicating about diabetes to policy-makers, funding partners and the public.
      Through this paper, WHO has developed a methodology for all such stakeholders to survey people with lived experiences to improve diabetes communication. We also reflect on its possible improvement. In doing so, this methodology can be adapted for the continued meaningful engagement of this group by WHO. Other options to learn from lived experience perspectives include through the WHO Framework for Meaningful Engagement of People Living with NCDs and Mental Health conditions [
      • World Health Organization
      Co-creating the WHO Framework for Meaningful Engagement of People Living with Noncommunicable Diseases and Mental Health conditions.
      ], and the integration of efforts to learn from lived experiences in WHO health information, technical assistance through policy and programme design, language in governance and reporting documents, engagement of collaborating partners, and in communications with WHO Member States.
      Values-based messaging is an important communication practice for diabetes. Respondents identified a consistent set of values, primarily the urgency of action needed, as important for WHO to convey when communicating about diabetes to policy-makers, funding partners and the public. Finally, we recognize the potential for multiple stakeholders working together to disseminate this methodology in national and subnational health system contexts, and for other NCDs, to gather insights that are context- and culture-specific. Taken together, these actions create opportunities to improve public discourse on diabetes and related policies.

      Author contributions

      DH conceived the idea for this study. All authors except KL provided insights on study design, with all authors contributing to manuscript preparation and response to peer review. KL and DH were responsible for data analysis and the preparation of the first draft of this manuscript.

      Declaration of Competing Interest

      The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

      Acknowledgements

      We sincerely thank all persons with lived experiences of diabetes who gave their time and expertise to support the development of this project, respond to the survey, and/or for their ongoing commitment and contribution to WHO’s work on diabetes. Namely, we would like to thank Professor Holly Witteman, Canada Research Chair in Human-Centred Digital Health.
      We also wish to thank all WHO staff who provided feedback on the initial study design, including colleagues working in the six WHO Regional Offices. We give particular thanks to Mr Jack Fisher, Technical Officer, Global Coordination Mechanism for NCDs, World Health Organization, and Ms Jaimie Marie Guerra, External Relations Officer, World Health Organization for their thoughtful review of this manuscript, Dr Slim Slama, Unit Head (NCD Management), World Health Organization for his technical leadership in management of Diabetes, and Dr Bente Mikkelsen, Director for Noncommunicable Diseases, World Health Organization, for her leadership in establishment  of the Global Diabetes Compact.

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