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2016 inspire Ÿ educate Ÿ empower1
PRO CYCLING
PRO CYCLING
RACINGWITHDIABETES
Diabetes Online Community
Meet Up at ADA
Ju...
2016 inspire Ÿ educate Ÿ empower2
PRO CYCLING
SETTING	
  THE	
  RECORD	
  STRAIGHT	
  
Diabetes	
  language,	
  myths	
 ...
2016 inspire Ÿ educate Ÿ empower3
PRO CYCLING
2016 inspire Ÿ educate Ÿ empower4
PRO CYCLING Team	
  Introduc8on	
  
•  Global	
  all-­‐diabetes	
  sports	
  team	
  o...
2016 inspire Ÿ educate Ÿ empower5
PRO CYCLING
Nearly	
  100	
  Athletes	
  from	
  17	
  Countries	
  
All	
  living	
  ...
2016 inspire Ÿ educate Ÿ empower6
PRO CYCLING
Team	
  Type	
  1	
  
Launched	
  
Team	
  Novo	
  Nordisk	
  
Launched	
 ...
2016 inspire Ÿ educate Ÿ empower7
PRO CYCLING
Team	
  History	
  
2006	
  to	
  2016	
  
Team	
  Novo	
  Nordisk	
  
Glo...
2016 inspire Ÿ educate Ÿ empower8
PRO CYCLING
2016	
  Teams	
   #	
   From	
  
Pipeline	
  
Pro	
  
	
  
17	
   14	
  	
...
2016 inspire Ÿ educate Ÿ empower9
PRO CYCLING
Inspire,	
  Educate	
  and	
  Empower	
  Everyone	
  Affected	
  By	
  Diab...
2016 inspire Ÿ educate Ÿ empower10
PRO CYCLING
DIABETES	
  LANGUAGE,	
  MYTHS	
  &	
  STIGMA	
  	
  
Why	
  Are	
  We	
 ...
2016 inspire Ÿ educate Ÿ empower11
PRO CYCLING
2016 inspire Ÿ educate Ÿ empower12
PRO CYCLING
Team	
  Survey	
  Validates	
  Diabetes	
  Misconcep8ons	
  S8ll	
  Exist...
2016 inspire Ÿ educate Ÿ empower13
PRO CYCLING
The	
  “good”	
  kind	
  of	
  diabetes.	
  
The	
  “bad”	
  kind	
  of	
...
2016 inspire Ÿ educate Ÿ empower14
PRO CYCLING Ques8ons	
  to	
  think	
  about	
  for	
  later	
  
Diabetes	
  Language...
2016 inspire Ÿ educate Ÿ empower15
PRO CYCLING Diabetes	
  Myths	
  &	
  S8gma	
  
Myth	
  
•  an	
  idea	
  or	
  story...
2016 inspire Ÿ educate Ÿ empower16
PRO CYCLING
#1	
  Response:	
  “MORE”	
  
Team	
  Survey	
  
People	
  with	
  Diabet...
2016 inspire Ÿ educate Ÿ empower17
PRO CYCLING
S8gma	
  Can	
  Lead	
  to	
  Discrimina8on	
  
DAWN2	
  Study	
  
Source...
2016 inspire Ÿ educate Ÿ empower18
PRO CYCLING
Discrimina8on	
  in	
  Employment	
  
Andrea	
  Peron	
  (ITA)	
  -­‐	
  ...
2016 inspire Ÿ educate Ÿ empower19
PRO CYCLING
Professor	
  Jane	
  Speight,	
  PhD	
  CPsychol	
  AFBPsS	
  
The	
  Aus...
2016 inspire Ÿ educate Ÿ empower20
PRO CYCLING
Descrip2on	
  
	
  
Systema2c	
  
review	
  
Interviews	
  
with:	
  	
  ...
2016 inspire Ÿ educate Ÿ empower21
PRO CYCLING Systema8c	
  review	
  
Key	
  messages	
  
•  General	
  public	
  doesn...
2016 inspire Ÿ educate Ÿ empower22
PRO CYCLING A	
  framework	
  for	
  diabetes-­‐related	
  s8gma	
  
Experiences	of	s...
2016 inspire Ÿ educate Ÿ empower23
PRO CYCLING Exploring	
  diabetes	
  s8gma	
  
‘I call it the blame and shame disease...
2016 inspire Ÿ educate Ÿ empower24
PRO CYCLING
	
  
	
  
	
  
“I	
  don’t	
  tell	
  everybody	
  everywhere	
  
that	
 ...
2016 inspire Ÿ educate Ÿ empower25
PRO CYCLING The	
  Diabetes	
  S8gma	
  Assessment	
  Scales	
  
Type	
  2	
  scale	
...
2016 inspire Ÿ educate Ÿ empower26
PRO CYCLING
Poster	
  66-­‐LB	
  
The	
  Diabetes	
  S8gma	
  Assessment	
  Scales	
 ...
2016 inspire Ÿ educate Ÿ empower27
PRO CYCLING
We	
  can	
  NOW	
  quan8fy	
  the	
  extent	
  &	
  impact	
  of	
  s8gm...
2016 inspire Ÿ educate Ÿ empower28
PRO CYCLING Diabetes	
  Language	
  
Language	
  
•  the	
  system	
  of	
  words	
  ...
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PRO CYCLING
Mee8ng	
  with	
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  Announcers	
  
Phil	
  Liggee	...
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Team	
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  Indicates	
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  to	
  Communicate	
  about	
  Diabe...
2016 inspire Ÿ educate Ÿ empower31
PRO CYCLING What	
  does	
  our	
  language	
  say	
  about	
  us?	
  
2016 inspire Ÿ educate Ÿ empower32
PRO CYCLING Diabetes	
  Australia	
  posi8on	
  statement	
  
“Words	
  are,	
  of	
 ...
2016 inspire Ÿ educate Ÿ empower33
PRO CYCLING The	
  language	
  of	
  “adherence”	
  
Assump8ons	
  
L  There	
  are	...
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PRO CYCLING
•  Talk	
  about	
  how	
  people	
  can	
  ‘influence’	
  
blood	
  gluco...
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Aotudes	
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PANEL	
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•  Renza	
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  Diabetes	
...
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PRO CYCLING Ques8ons	
  
1.  What’s	
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  ridiculous	
  thing	
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...
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Setting the Record Straight: Diabetes Language, Myths & Stigma

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Terrific presentation by Team Novo Nordisk to the DOC (diabetes online community) at the American Diabetes Association's scientific conference, New Orleans, June, 2016. [Shared with permission]

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Setting the Record Straight: Diabetes Language, Myths & Stigma

  1. 1. 2016 inspire Ÿ educate Ÿ empower1 PRO CYCLING PRO CYCLING RACINGWITHDIABETES Diabetes Online Community Meet Up at ADA June 2016
  2. 2. 2016 inspire Ÿ educate Ÿ empower2 PRO CYCLING SETTING  THE  RECORD  STRAIGHT   Diabetes  language,  myths  &  s2gma    
  3. 3. 2016 inspire Ÿ educate Ÿ empower3 PRO CYCLING
  4. 4. 2016 inspire Ÿ educate Ÿ empower4 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)    
  5. 5. 2016 inspire Ÿ educate Ÿ empower5 PRO CYCLING Nearly  100  Athletes  from  17  Countries   All  living  with  diabetes   Team  Novo  Nordisk  athletes  will  compete  in  over  500  events  in  2016  
  6. 6. 2016 inspire Ÿ educate Ÿ empower6 PRO CYCLING 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  
  7. 7. 2016 inspire Ÿ educate Ÿ empower7 PRO CYCLING 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  
  8. 8. 2016 inspire Ÿ educate Ÿ empower8 PRO CYCLING 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  
  9. 9. 2016 inspire Ÿ educate Ÿ empower9 PRO CYCLING 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  
  10. 10. 2016 inspire Ÿ educate Ÿ empower10 PRO CYCLING DIABETES  LANGUAGE,  MYTHS  &  STIGMA     Why  Are  We  Talking  About  This?  
  11. 11. 2016 inspire Ÿ educate Ÿ empower11 PRO CYCLING
  12. 12. 2016 inspire Ÿ educate Ÿ empower12 PRO CYCLING 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%  
  13. 13. 2016 inspire Ÿ educate Ÿ empower13 PRO CYCLING 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     Source:  Team  Novo  Nordisk  Se/ng  the  Record  Straight  Survey.  310  respondents.  June  2016.    
  14. 14. 2016 inspire Ÿ educate Ÿ empower14 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?  
  15. 15. 2016 inspire Ÿ educate Ÿ empower15 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/    
  16. 16. 2016 inspire Ÿ educate Ÿ empower16 PRO CYCLING #1  Response:  “MORE”   Team  Survey   People  with  Diabetes,  Parents  and  Partners     Source:  Team  Novo  Nordisk  Se/ng  the  Record  Straight  Survey.  310  respondents.  June  2016.     I  wish  other  people  knew  _____  about  diabetes.  
  17. 17. 2016 inspire Ÿ educate Ÿ empower17 PRO CYCLING 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    
  18. 18. 2016 inspire Ÿ educate Ÿ empower18 PRO CYCLING 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  
  19. 19. 2016 inspire Ÿ educate Ÿ empower19 PRO CYCLING 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:    jspeight@acbrd.org.au            @ACBRD    @janespeight        
  20. 20. 2016 inspire Ÿ educate Ÿ empower20 PRO CYCLING Descrip2on     Systema2c   review   Interviews   with:     -­‐  adults  with  T1D   -­‐  adults  with  T2D   Measurement     Development   and  valida2on   of  self-­‐report   scales   Interven2on     Interven2ons   to  reduce   s2gma:   •  Policy   •  Prac2ce   •  Individual   The  Australian  Centre  for  Behavioural  Research  in  Diabetes   Our  diabetes  s2gma  research  program  
  21. 21. 2016 inspire Ÿ educate Ÿ empower21 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  
  22. 22. 2016 inspire Ÿ educate Ÿ empower22 PRO CYCLING A  framework  for  diabetes-­‐related  s8gma   Experiences of stigma Consequences of stigma Psychological • Fear • Embarrassment • Self-blame • Low self- esteem/self- efficacy • Worry/ anxiety • Depression • Distress • Loneliness Behavioural • Concealment • Suboptimal self- care • Psychological insulin resistance • Reduced social & occupational functioning Medical Sub-optimal outcomes, e.g. HbA1c, BP, and long-term comp-lications Identity threat Features of diabetes and its management •Needle use •Hypoglycaemia •Dietary modifications •Overweight/ obesity •Greater utilisation of healthcare resources •Deviance from societal values Psychosocial mechanisms driving stigma Fear, blame and disgust arising from negative stereotypes about diabetes and its management Perceived stigma •Being judged •Being monitored by others •Being unfairly treated Stigmatising attributions •Unhealthy •Fat •Lacking control •Lazy •Dirty •Draining societal resources Stigmatising practices •Restrictions on work/ employment opportunities •Loss of relationship •Restrictions in travel •Being treated differently •Mistaken for other stigmatised medical conditions Sources of stigma •Individuals •Groups •Communities •Health professionals •Person/ people with diabetes Mitigating strategies Education,advocacy, social marketing, counselling, social support, health promotion A framework for diabetes-related stigma
  23. 23. 2016 inspire Ÿ educate Ÿ empower23 PRO CYCLING Exploring  diabetes  s8gma   ‘I call it the blame and shame disease’: a qualitative study about perceptions of social stigma surrounding type 2 diabetes 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 shame disease’: a qualitative study about perceptions of social stigma surrounding type 2 diabetes. BMJ Open 2013;3:e003384. doi:10.1136/bmjopen-2013- 003384 ABSTRACT Objectives: While health-related stigma has been the subject of considerable research in other conditions (obesity and HIV/AIDS), it has not received substantial attention in diabetes. The aim of the current study was to explore the social experiences of Australian adults living with type 2 diabetes mellitus (T2DM), with a particular focus on the perception and experience of diabetes-related stigma. Design: A qualitative study using semistructured Strengths and limitations of this study ▪ This qualitative study is the first to describe, in detail, the perceptions and experiences of diabetes-related stigma from the perspective of adults with type 2 diabetes mellitus (T2DM). ▪ While the small sample size may limit the repre- sentativeness of the findings, efforts were made to include a broad cross-section of adults with T2DM and data saturation was achieved. Open Access Research group.bmj.comon November 19, 2013 - Published bybmjopen.bmj.comDownloaded from ‘I’m not a druggie, I’m just a diabetic’: a qualitative study of stigma from the perspective of adults with type 1 diabetes 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 a diabetic’: a qualitative study of stigma from the perspective of adults with type 1 diabetes. BMJ Open 2014;4:e005625. doi:10.1136/bmjopen-2014- 005625 ▸ Prepublication history for this paper is available online. To view these files please visit the journal online (http://dx.doi.org/10.1136/ bmjopen-2014-005625). Received 6 May 2014 Revised 8 July 2014 Accepted 9 July 2014 ABSTRACT Objectives: While health-related stigma has been the subject of considerable research in other conditions (eg, HIV/AIDS, obesity), it has not received substantial attention in diabetes. Our aim was to explore perceptions and experiences of diabetes-related stigma from the perspective of adults with type 1 diabetes mellitus (T1DM). Design: A qualitative study using semistructured interviews, which were audio recorded, transcribed and subject to thematic analysis. Setting: All interviews were conducted in non-clinical settings in metropolitan areas of Victoria, Australia. Participants: Adults aged ≥18 years with T1DM living in Victoria were eligible to take part. Participants were recruited primarily through the state consumer organisation representing people with diabetes. A total of 27 adults with T1DM took part: 15 (56%) were women; median IQR age was 42 (23) years and diabetes duration was 15 (20) years). Results: Australian adults with T1DM perceive and experience T1DM-specific stigma as well as stigma-by- association with type 2 diabetes. Such stigma is characterised by blame, negative social judgement, stereotyping, exclusion, rejection and discrimination. Participants identified the media, family and friends, healthcare professionals and school teachers as sources of stigma. The negative consequences of this stigma span numerous life domains, including impact on relationships and social identity, emotional well- being and behavioural management of T1DM. This stigma also led to reluctance to disclose the condition experienced exclusion, rejection, blame, stereotyping and/or status loss.1 2 This is a destructive social phenomenon; one that has been observed and studied extensively in conditions such as HIV/AIDS,3–5 obesity,6–9 and mental illness.10–14 Type 1 diabetes melli- tus (T1DM) is a serious chronic condition that requires unrelenting self-management (including multiple daily insulin injections or insulin pump therapy), and can impact on both quantity and quality of life. Traditionally, T1DM research has focused on the biomedical aspects of aetiology and man- agement of the condition. However, recent Strengths and limitations of this study ▪ To our knowledge, this study is the first to conduct a systematic and in-depth examination of the perception and experience of diabetes- related stigma from the perspective of adults with type 1 diabetes mellitus. ▪ Strengths of this study include the novelty of the topic of enquiry, and the richness of data col- lected through in-depth interviewing. ▪ Limitations of this study include the fact that people born outside Australia and those living in rural/regional areas were under-represented in our sample. Open Access Research group.bmj.comon July 24, 2014 - Published bybmjopen.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  
  24. 24. 2016 inspire Ÿ educate Ÿ empower24 PRO CYCLING       “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?  
  25. 25. 2016 inspire Ÿ educate Ÿ empower25 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  
  26. 26. 2016 inspire Ÿ educate Ÿ empower26 PRO CYCLING 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)  
  27. 27. 2016 inspire Ÿ educate Ÿ empower27 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  
  28. 28. 2016 inspire Ÿ educate Ÿ empower28 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/    
  29. 29. 2016 inspire Ÿ educate Ÿ empower29 PRO CYCLING 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”  
  30. 30. 2016 inspire Ÿ educate Ÿ empower30 PRO CYCLING 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%   Source:  Team  Novo  Nordisk  Se/ng  the  Record  Straight  Survey.  310  respondents.  June  2016.     Diabetes  must  be  well  _____.   “Managed”   72%   “Controlled”   15%   Doesn’t  maeer   13%  
  31. 31. 2016 inspire Ÿ educate Ÿ empower31 PRO CYCLING What  does  our  language  say  about  us?  
  32. 32. 2016 inspire Ÿ educate Ÿ empower32 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  
  33. 33. 2016 inspire Ÿ educate Ÿ empower33 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  
  34. 34. 2016 inspire Ÿ educate Ÿ empower34 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  …  
  35. 35. 2016 inspire Ÿ educate Ÿ empower35 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  statement   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”  
  36. 36. 2016 inspire Ÿ educate Ÿ empower36 PRO CYCLING PANEL  DISCUSSION  
  37. 37. 2016 inspire Ÿ educate Ÿ empower37 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  
  38. 38. 2016 inspire Ÿ educate Ÿ empower38 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?  
  39. 39. 2016 inspire Ÿ educate Ÿ empower39 PRO CYCLING Thank  You  

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