Setting the Record Straight: Diabetes Language, Myths & Stigma

2016 inspire � educate � empower 1

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Diabetes Online Community Meet Up at ADA

June 2016


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SETTING THE RECORD STRAIGHT

Diabetes language, myths & s2gma


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PRO CYCLING Team Introduc8on •  Global all-‐diabetes sports team of

cyclists, triathletes and runners, spearheaded by the world’s first all-‐diabetes professional cycling team –  Nearly 100 athletes from 17 countries

•  Mission: Inspire, Educate and

Empower people affected by diabetes

•  Goal: compete in the Tour de France by 2021 (100th anniversary of discovery of insulin)


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Nearly 100 Athletes from 17 Countries All living with diabetes

Team Novo Nordisk athletes will compete in over 500 events in 2016


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Team Type 1 Launched

Team Novo Nordisk Launched • World’s First All-‐Diabetes Team

Won RAAM Set new record

Elite Team – All Diabetes • Won RAAM 2 more 2mes (2009-‐10) •  Launched Triathlon & T2 teams •  Finished Run Across America (2011)

Pro Cycling Team – Mixed Diabetes • Ranked 24th in the world (2012) •  Competed in 5+ World Tour Races •  1st Major T1 Win – Tour de Beauce (2011)

Finished Race Across America (RAAM) Lost by 5 minutes

Team History 2006-‐2013

2006 2007 2008 2009 2010 2011 2012 2013


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Team History 2006 to 2016

Team Novo Nordisk Global all-‐diabetes sports team of cyclists, triathletes and runners, spearheaded by the world’s first all-‐diabetes professional cycling team.

Team Type 1 Founda8on Global access to: •  Medicine •  Educa2on •  Empowerment


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2016 Teams # From Pipeline

Pro

17 14 (78%)

Development

18 18 (100%)

Junior

12 12 (100%)

Talent ID Camp

45 -‐-‐

Elite Cycling, Run, Tri, T2

47 -‐-‐

Building our Pipeline of Athletes Looking for Talented, Endurance Athletes with Diabetes


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Inspire, Educate and Empower Everyone Affected By Diabetes Global Exposure

Digital .-‐-‐-‐ PR & Media -‐-‐-‐ Outreach

#1 in Pro Cycling & Diabetes

1,800+ Ar8cles Per Year

365+ Diabetes Community Events


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DIABETES LANGUAGE, MYTHS & STIGMA

Why Are We Talking About This?


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Team Survey Validates Diabetes Misconcep8ons S8ll Exist People with Diabetes, Parents and Partners

Source: Team Novo Nordisk Se/ng the Record Straight Survey. 310 respondents. June 2016.

Which ques8ons have you (or your child or partner with diabetes) been asked?

Ques8on Been Asked

People with type 1 diabetes can only eat special foods-‐ right? 86%

Did you get diabetes by ea2ng poorly and not taking care of yourself? 67%

Do you have the good kind or bad kind of diabetes? 62%

Can people with diabetes live a long, healthy life? 53%

Can you outgrow diabetes? 44%

Is your diabetes contagious? 23%


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The “good” kind of diabetes.

The “bad” kind of diabetes.

Inconsistent percep8ons of “good” vs “bad” kind of diabetes People with Diabetes, Parents and Partners



PRO CYCLING Ques8ons to think about for later

Diabetes Language, Myths and S2gma •  What challenges do you face?

•  How can we help each other address these challenges?


PRO CYCLING Diabetes Myths & S8gma

Myth •  an idea or story that is believed by many people but that is not

true S8gma •  a set of nega<ve and o=en unfair beliefs that a society or

group of people have about something

Source: hep://www.merriam-‐webster.com/


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#1 Response: “MORE”

Team Survey People with Diabetes, Parents and Partners


I wish other people knew _____ about diabetes.


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S8gma Can Lead to Discrimina8on DAWN2 Study

Source: hep://www.dawnstudy.com/content/dam/Dawnstudy/AFFILIATE/www-‐dawnstudy-‐com/Home/Common_update/Changing_Diabetes_2013_DAWN2_infographic_discrimina2on_Partners.png


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Discrimina8on in Employment Andrea Peron (ITA) -‐ Pro Cyclist

•  Started racing at young age •  Diagnosed with type 1 diabetes at 16

–  Doctor encouraged to con2nue racing •  Turned away from a pro contract due to

diabetes •  Joined Team Novo Nordisk in 2013 •  Race Results

–  4 podiums –  8 top tens


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Professor Jane Speight, PhD CPsychol AFBPsS The Australian Centre for Behavioural Research in Diabetes

Aims to increase our understanding of what it’s like living with diabetes •  Research centre: crea2ng knowledge and

impact •  Resource: for clinicians, researchers and

policy makers •  Voice: influencing policy and prac2ce

E: [email protected] @ACBRD @janespeight


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scrip

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Systema2c review Interviews with: -‐ adults with T1D -‐ adults with T2D

Measuremen

t Development and valida2on of self-‐report scales In

terven

2on

Interven2ons to reduce s2gma: •  Policy •  Prac2ce •  Individual

The Australian Centre for Behavioural Research in Diabetes Our diabetes s2gma research program


PRO CYCLING Systema8c review

Key messages •  General public doesn’t consider diabetes to be a s2gma2sed condi2on

•  People with diabetes report s2gma: feeling judged & monitored

•  Diabetes s2gma may have nega2ve consequences

•  Research in the area is scarce & limited by absence of standardised measurement


PRO CYCLING A framework for diabetes-‐related s8gma

www.acbrd.org.au

Experiencesofstigma Consequencesofstigma

Psychological• Fear• Embarrassment• Self-blame• Lowself-esteem/self-efficacy

• Worry/anxiety• Depression• Distress• Loneliness

Behavioural

• Concealment• Suboptimalself-care

• Psychologicalinsulinresistance

• Reduced social&occupationalfunctioning

Medical

Sub-optimaloutcomes, e.g.HbA1c,BP,andlong-termcomp-lications

Identitythreat

Featuresofdiabetesanditsmanagement

•Needleuse•Hypoglycaemia•Dietarymodifications•Overweight/obesity•Greaterutilisation ofhealthcareresources•Deviancefromsocietalvalues

Psychosocialmechanismsdrivingstigma

Fear,blameanddisgustarisingfromnegativestereotypesaboutdiabetesanditsmanagement

Perceivedstigma

•Beingjudged•Beingmonitoredbyothers•Beingunfairlytreated

Stigmatisingattributions•Unhealthy•Fat•Lackingcontrol•Lazy•Dirty•Drainingsocietalresources

Stigmatisingpractices

•Restrictionsonwork/employmentopportunities•Lossofrelationship•Restrictionsintravel•Beingtreateddifferently•Mistakenforotherstigmatisedmedicalconditions

Sourcesofstigma

•Individuals•Groups•Communities•Healthprofessionals•Person/peoplewithdiabetes

MitigatingstrategiesEducation, advocacy,socialmarketing,counselling,socialsupport,healthpromotion

Aframeworkfordiabetes-relatedstigma


PRO CYCLING Exploring diabetes s8gma

‘I call it the blame and shame disease’:a qualitative study about perceptionsof social stigma surrounding type 2diabetes

Jessica L Browne,1,2 Adriana Ventura,1,3 Kylie Mosely,4 Jane Speight1,2,5

To cite: Browne JL,Ventura A, Mosely K, et al.‘I call it the blame and shamedisease’: a qualitative studyabout perceptionsof social stigma surroundingtype 2 diabetes. BMJ Open2013;3:e003384.doi:10.1136/bmjopen-2013-003384

▸ Prepublication history forthis paper is available online.To view these files pleasevisit the journal online(http://dx.doi.org/10.1136/bmjopen-2013-003384).

Received 11 June 2013Revised 17 October 2013Accepted 18 October 2013

1The Australian Centre forBehavioural Research inDiabetes, Diabetes Australia—Vic, Melbourne, Victoria,Australia2Centre for Mental Health andWellbeing Research, Schoolof Psychology, DeakinUniversity, Burwood, Victoria,Australia3School of Psychology,Deakin University, Burwood,Victoria, Australia4School of Psychology,Australian Catholic University,Strathfield, New South Wales,Australia5AHP Research, Hornchurch,UK

Correspondence toDr Jessica L Browne;[email protected]

ABSTRACTObjectives: While health-related stigma has been thesubject of considerable research in other conditions(obesity and HIV/AIDS), it has not received substantialattention in diabetes. The aim of the current study wasto explore the social experiences of Australian adultsliving with type 2 diabetes mellitus (T2DM), with aparticular focus on the perception and experience ofdiabetes-related stigma.Design: A qualitative study using semistructuredinterviews, which were audio recorded, transcribed andsubject to thematic analysis.Setting: This study was conducted in non-clinicalsettings in metropolitan and regional areas in theAustralian state of Victoria. Participants were recruitedprimarily through the state consumer organisationrepresenting people with diabetes.Participants: All adults aged ≥18 years with T2DMliving in Victoria were eligible to take part. Twenty-fiveadults with T2DM participated (12 women; median age61 years; median diabetes duration 5 years).Results: A total of 21 (84%) participants indicatedthat they believed T2DM was stigmatised, or reportedevidence of stigmatisation. Specific themes about theexperience of stigma were feeling blamed by others forcausing their own condition, being subject to negativestereotyping, being discriminated against or havingrestricted opportunities in life. Other themes focusedon sources of stigma, which included the media,healthcare professionals, friends, family andcolleagues. Themes relating to the consequences ofthis stigma were also evident, including participants’unwillingness to disclose their condition to others andpsychological distress. Participants believed that peoplewith type 1 diabetes do not experience similarstigmatisation.Conclusions: Our study found evidence of peoplewith T2DM experiencing and perceiving diabetes-related social stigma. Further research is needed toexplore ways to measure and minimise diabetes-relatedstigma at the individual and societal levels, and also toexplore perceptions and experiences of stigma inpeople with type 1 diabetes.

INTRODUCTIONType 2 diabetes mellitus (T2DM) affectsmore than 220 million worldwide and isincreasing in prevalence.1 More than onemillion Australians have diabetes, with mostof these having T2DM.2 Its physical impact iswell documented, with diabetes managementand complications having substantial implica-tions for individual and societal health, psy-chological well-being and quality of life, aswell as for the global economy.3–7 In the pastdecade, landmark studies have demonstratedthat T2DM can be prevented,8 9 highlightingthe role of behaviour and personal responsi-bility in the development of the condition.As the increasing prevalence of T2DM hasachieved prominence in the media and inthe consciousness of the general public, per-ceptions of T2DM appear to be changing,with anecdotal evidence of social stigma anddiscrimination apparent (eg, public com-ments posted online in response to articlesin the media10). While the fact that theperson has T2DM may not be immediately

Strengths and limitations of this study

▪ This qualitative study is the first to describe, indetail, the perceptions and experiences ofdiabetes-related stigma from the perspective ofadults with type 2 diabetes mellitus (T2DM).

▪ While the small sample size may limit the repre-sentativeness of the findings, efforts were madeto include a broad cross-section of adults withT2DM and data saturation was achieved.

▪ All participants were members of the stateorganisation representing people with diabetesand most were tertiary educated. These peoplemay be more engaged in their diabetes care andin diabetes issues than the general population ofadults with diabetes.

Browne JL, Ventura A, Mosely K, et al. BMJ Open 2013;3:e003384. doi:10.1136/bmjopen-2013-003384 1

Open Access Research

group.bmj.com on November 19, 2013 - Published by bmjopen.bmj.comDownloaded from

‘I’m not a druggie, I’m just a diabetic’:a qualitative study of stigma from theperspective of adults with type 1diabetes

Jessica L Browne,1,2 Adriana Ventura,1,3 Kylie Mosely,4 Jane Speight1,2,5

To cite: Browne JL,Ventura A, Mosely K, et al.‘I’m not a druggie, I’m just adiabetic’: a qualitative studyof stigma from theperspective of adults withtype 1 diabetes. BMJ Open2014;4:e005625.doi:10.1136/bmjopen-2014-005625

▸ Prepublication history forthis paper is available online.To view these files pleasevisit the journal online(http://dx.doi.org/10.1136/bmjopen-2014-005625).

Received 6 May 2014Revised 8 July 2014Accepted 9 July 2014

For numbered affiliations seeend of article.

Correspondence toDr Jessica L Browne;[email protected]

ABSTRACTObjectives: While health-related stigma has been thesubject of considerable research in other conditions(eg, HIV/AIDS, obesity), it has not received substantialattention in diabetes. Our aim was to exploreperceptions and experiences of diabetes-related stigmafrom the perspective of adults with type 1 diabetesmellitus (T1DM).Design: A qualitative study using semistructuredinterviews, which were audio recorded, transcribed andsubject to thematic analysis.Setting: All interviews were conducted in non-clinicalsettings in metropolitan areas of Victoria, Australia.Participants: Adults aged ≥18 years with T1DMliving in Victoria were eligible to take part. Participantswere recruited primarily through the state consumerorganisation representing people with diabetes. A totalof 27 adults with T1DM took part: 15 (56%) werewomen; median IQR age was 42 (23) years anddiabetes duration was 15 (20) years).Results: Australian adults with T1DM perceive andexperience T1DM-specific stigma as well as stigma-by-association with type 2 diabetes. Such stigma ischaracterised by blame, negative social judgement,stereotyping, exclusion, rejection and discrimination.Participants identified the media, family and friends,healthcare professionals and school teachers assources of stigma. The negative consequences of thisstigma span numerous life domains, including impacton relationships and social identity, emotional well-being and behavioural management of T1DM. Thisstigma also led to reluctance to disclose the conditionin various environments. Adults with T1DM can beboth the target and the source of diabetes-relatedstigma.Conclusions: Stigmatisation is part of the socialexperience of living with T1DM for Australian adults.Strategies and interventions to address and mitigatethis diabetes-related stigma need to be developed andevaluated.

INTRODUCTIONHealth-related stigma is the negative socialjudgement based on a feature of a conditionor its management that leads to perceived or

experienced exclusion, rejection, blame,stereotyping and/or status loss.1 2 This is adestructive social phenomenon; one that hasbeen observed and studied extensively inconditions such as HIV/AIDS,3–5 obesity,6–9

and mental illness.10–14 Type 1 diabetes melli-tus (T1DM) is a serious chronic conditionthat requires unrelenting self-management(including multiple daily insulin injectionsor insulin pump therapy), and can impacton both quantity and quality of life.Traditionally, T1DM research has focused onthe biomedical aspects of aetiology and man-agement of the condition. However, recentdecades have witnessed the rise of psycho-social research, exploring the emotional,behavioural and social aspects of living withT1DM.15

There is limited but growing awarenessthat people with diabetes face stigmatisationand discrimination as a result of their condi-tion. The International Diabetes Federationhas identified diabetes-related stigma as aproblem that needs urgent attention, andone of the organisation’s key priorities is to‘champion a world free from discriminationand stigma for people with diabetes’ (ref. 16,p.10). A recent large-scale multinational

Strengths and limitations of this study

▪ To our knowledge, this study is the first toconduct a systematic and in-depth examinationof the perception and experience of diabetes-related stigma from the perspective of adultswith type 1 diabetes mellitus.

▪ Strengths of this study include the novelty of thetopic of enquiry, and the richness of data col-lected through in-depth interviewing.

▪ Limitations of this study include the fact thatpeople born outside Australia and those living inrural/regional areas were under-represented inour sample.

Browne JL, et al. BMJ Open 2014;4:e005625. doi:10.1136/bmjopen-2014-005625 1

Open Access Research

group.bmj.com on July 24, 2014 - Published by bmjopen.bmj.comDownloaded from

Group N Women Age (yrs) Median (IQR)

Diabetes duration (yrs) Median (IQR)

T1D 27 15 (56%) 42 (23) 15 (20)

T2D 25 12 (48%) 61 (15) 5 (7)

Blame “I'm self-‐conscious about ea2ng sweet things around people…people do judge you or blame you” T1D, woman, aged 29 “I find a lot of people, they like to think of you as being the culprit. In fact I actually had one person say ‘well you’ve dug your grave with your own teeth’” T2D, man, aged 67

Stereotyping “…damaged goods I guess. People think you’re more broken or damaged or sicker than you really are” T1D, woman, aged 21 “The usual: obese, overweight, doesn’t do any exercise, very lazy” T2D, woman, aged 20

Discrimina8on “As soon as I told my employer that I had a medical problem and what it was he wrote back to me and said that he couldn't guarantee my future career” T1D, man, aged 68 “If I apply for a job that I would be discriminated against on the basis of that. That’s a fear” T2D, woman, aged 59


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“I don’t tell everybody everywhere that I’ve got diabetes...I think some2mes I worry about it perhaps jeopardising opportuni2es, like discrimina2on”

“I tell them but I don't think people want to know... People don't like you telling them”

“I haven’t told [my partners family] I’m not sure that that’s not wan2ng them to know, it’s actually not wan2ng to have to deal with the ques2ons... all my life I’ve been afraid of judgment and I’ve hidden informa2on. It’s a bit of a habit, worrying about what people are going to think”

“That doesn’t worry me at all and a lot of them, my friends and stuff, they’ve all known someone with diabetes”

“I don't hide it, I say "sorry, I've got to eat something, I'm diabe2c”

“So prospec2ve employers, not un2l axer they got to know me and then I’m okay”

How do you feel about other people knowing you have diabetes?


PRO CYCLING The Diabetes S8gma Assessment Scales

Type 2 scale example items Strongly disagree

Disagree Unsure Agree Strongly agree

I'm ashamed of having type 2 diabetes 1 2 3 4 5

Some people see me as a lesser person because I have type 2 diabetes 1 2 3 4 5

Type 1 scale example items Strongly disagree

Disagree Unsure Agree Strongly agree

Telling people I have type 1 diabetes is just not worth the grief 1 2 3 4 5

Some people make unfair assump2ons about what I can and cannot do because of my type 1 diabetes 1 2 3 4 5


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Poster 66-‐LB

The Diabetes S8gma Assessment Scales

•  1,964 adults completed –  DSAS-‐1: 900 T1D; 59% women; mean age

44yrs; dura2on 19yrs; 34% using insulin pump

–  DSAS-‐2: 1,062 T2D; 43% women; mean age 61 yrs; dura2on 11 yrs; 43% using insulin

•  Two 19-‐item scales, valid & reliable

•  Associa2ons with: –  depressive symptoms: r=0.44-‐0.48, p<0.001 –  anxiety symptoms: r=0.46, p<0.001 –  self-‐esteem: r=-‐052, p<0.001 –  diabetes distress: r=0.63-‐0.67, p<0.001

16% 19%

with T1D have elevated scores (DSAS-‐1) with T2D have elevated scores (DSAS-‐2)


PRO CYCLING We can NOW quan8fy the extent & impact of s8gma

Diabetes s2gma

Self-‐care & clinical outcomes

Emo2onal well-‐being

Self-‐esteem &

self-‐efficacy

Healthcare engage-‐ment

Other?

Social support

Develop & evaluate interven8ons: -‐  Individual -‐  Prac2ce -‐  Environment -‐  Policy


PRO CYCLING Diabetes Language

Language •  the system of words or signs that people use to express

thoughts and feelings to each other

Source: hep://www.merriam-‐webster.com/


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Mee8ng with NBC Pro Cycling Announcers Phil Liggee and Paul Sherwen

1) Before Mee8ng •  “Team Novo Nordisk riders suffer from

diabetes” 2) Mee8ng at Amgen Tour of California •  Shared guide to communicate about

diabetes 3) Aner Mee8ng •  “Javier Megias is living with type 1

diabetes”


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Team Survey Indicates How to Communicate about Diabetes For People with Diabetes, Parents and Partners

Someone who has diabetes is a _____.

“Person with diabetes” 37%

Doesn’t maeer 33%

“Diabe2c” 29%

Diabetes is a _____.

“Condi8on” 51%

“Disease” 32%

Doesn’t maeer 17%

Those who don’t have diabetes are ____.

“People without diabetes” 55%

Doesn’t maeer 29%

“Normal” or “Healthy” 16%

I need to _____ my blood sugar.

“Check” 65%

Doesn’t maeer 19%

“Test” 16%


Diabetes must be well _____.

“Managed” 72%

“Controlled” 15%

Doesn’t maeer 13%


PRO CYCLING What does our language say about us?


PRO CYCLING Diabetes Australia posi8on statement

“Words are, of course, the most powerful drug used by mankind”

Rudyard Kipling

PDF of Posi2on Statement Can Be Found Here

https://static.diabetesaustralia.com.au/s/fileassets/diabetes-australia/9864613f-6bc0-4773-9337-751e953777cd.pdf


PRO CYCLING The language of “adherence”

Assump8ons L  There are clear instruc2ons L  Health professionals agree on what is

needed

L  Agreement about the decisions made

L  Health professionals accurately recall what they tell people with diabetes

Reality •  People with diabetes

–  correctly recall a mean of 0.6 decisions made in a consulta2on

–  recall a mean of 1.7 decisions in a consulta2on not found on the recording!

•  Health professionals –  correctly recalled a mean of 0.8

decisions per consulta2on –  recall a mean of 2.3 decisions per

consulta2on not found on recording!

Skinner TC et al (2007) Diabe<c Medicine, 24, 557-‐560


PRO CYCLING

•  Talk about how people can ‘influence’ blood glucose levels

•  Offer hope •  Recognise the reality of diabetes is a

compromise between: –  best blood glucose possible –  no severe hypoglycaemia –  no distress –  … and having a happy, spontaneous,

independent life

The language of “control”

Assump8ons L  You must be controlled L  Its for your own good L  You are your numbers

–  they indicate how ‘good’ you’ve been (or not!)

L  If you don’t do well enough, its because…

–  you didn’t have enough willpower –  you are ‘non-‐compliant’

L  You can never do enough L  Perpetuates ‘blame / shame’ dialogue

What to do instead?

… his BG control is …

… he is poorly controlled…

… she has poor blood glucose control …


PRO CYCLING

Aotudes to insulin of people with type 2 diabetes reflect this language

0

10

20

30

40

50

60

Personal failure *

Unwilling Willing

% agreeing with

statem

ent

Polonsky WH et al (2005) Diabetes Care 28(10): 2543-‐2545

REALITY: Type 2 diabetes is a progressive condi<on and eventually almost all people with this condi<on will require insulin

Wong J (2004)

*PERCEPTION: “insulin would mean I had failed, that I hadn’t done a good enough job taking care of my diabetes”


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PANEL DISCUSSION


PRO CYCLING Today’s Panelists

•  Renza Scibilia (AUS) – Diabetes Australia & Diabetogenic •  Ben Dilley (USA) – TNN, Former Pro Cyclist •  Thomas Raeymaekers (BEL) – TNN, Former Pro Cyclist •  Lauren Adams, RD CDE (USA) – TNN, Elite Runner


PRO CYCLING Ques8ons

1.  What’s the most ridiculous thing you’ve heard about diabetes?

2.  Tips on how to address s2gmas? –  Do you have any prepared responses?

3.  Person with Diabetes or Diabe2c?


PRO CYCLING Thank You

Setting the Record Straight: Diabetes Language, Myths & Stigma

Health & Medicine

Transcript of Setting the Record Straight: Diabetes Language, Myths & Stigma