Setting the Record Straight: Diabetes Language, Myths & Stigma

2016 inspire Ÿ educate Ÿ empower1
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RACINGWITHDIABETES
Diabetes Online Community
Meet Up at ADA
June 2016

PRO CYCLING
SETTING
THE
RECORD
STRAIGHT

Diabetes
language,
myths
&
s2gma

PRO CYCLING

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

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

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

PRO CYCLING
DIABETES
LANGUAGE,
MYTHS
&
STIGMA

Why
Are
We
Talking
About
This?

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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%

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.

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/

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.

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

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

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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:

jspeight@acbrd.org.au

@ACBRD

@janespeight

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

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

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

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

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?

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

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)

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

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/

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”

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%

PRO CYCLING What
does
our
language
say
about
us?

Australia
posi8on
statement

“Words
are,
of

course,
the
most

powerful
drug

used
by
mankind”

Rudyard
Kipling

PDF
of
Posi2on
Statement
Can
Be
Found
Here

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
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”

PRO CYCLING
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

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