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Stigma in People With Type 1 or Type 2 Diabetes

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  • The diaTribe Foundation

Abstract and Figures

This study quantitatively measures diabetes stigma and its associated psychosocial impact in a large population of U.S. patients with type 1 or type 2 diabetes using an online survey sent to 12,000 people with diabetes. A majority of respondents with type 1 (76%) or type 2 (52%) diabetes reported that diabetes comes with stigma. Perceptions of stigma were significantly higher among respondents with type 1 diabetes than among those with type 2 diabetes, with the highest rate in parents of children with type 1 diabetes (83%) and the lowest rate in people with type 2 diabetes who did not use insulin (49%). Our results suggest that a disturbingly high percentage of people with diabetes experience stigma, particularly those with type 1 or type 2 diabetes who are on intensive insulin therapy. The experience of stigma disproportionately affects those with a higher BMI, higher A1C, and poorer self-reported blood glucose control, suggesting that those who need the most help are also the most affected by stigma.
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VOLUME 35 , NUMBER 1, WIN TER 2017 27
FEATURE ARTICLE
Diabetes is a chronic disease that
aects 29 million Americans
and requires ongoing patient
self-management to manage blood
glucose and prevent complications.
Although extensive research has
characterized the underlying physiol-
ogy of diabetes (1–3), less work has
addressed the disease’s psychosocial
demands and their consequent eects
on management and quality of life.
Health-related stigma is a psycho-
logical factor known to inuence the
lives of people with chronic medical
conditions such as HIV/AIDS (4–7),
epilepsy (8–10), and obesity (11–14).
Stigma is dened as a characteristic
of a person that diers negatively
from culturally dened norms, and
stigmatization occurs when there is
perception of a stigma that results in
a punitive response. Perceived stig-
matization, or felt stigma, is when an
individual believes that others perceive
a personal characteristic as deviant
and respond unfairly (15,16). In this
article, the term diabetes stigma refers
to the experiences of negative feelings
such as exclusion, rejection, or blame
due to the perceived stigmatization of
having diabetes.
Socially identiable characteristics
related to diabetes can include insulin
injections, blood glucose monitor-
ing, dietary restrictions, obesity, and
hypoglycemic episodes, all of which
can contribute to the experience of
diabetes stigma. Studies investigat-
ing the psychosocial consequences
of being stigmatized have reported
patients with diabetes experienc-
ing feelings of fear, embarrassment,
blame, guilt, anxiety, and low self-
esteem (17,18). ese negative emo-
tions can result in depression (19,20)
and are correlated with an increased
rate of complications such as retinop-
athy, macrovascular problems, and
sexual dysfunction (21). Patients have
reported “looks of contempt” when
injecting insulin in public, workplace
discrimination, and limitations in
Stigma in People With Type 1 or Type
2 Diabetes
Nancy F. Liu,1* Adam S. Brown,1,2* Alexandra E. Folias,3† Michael F. Younge,3 Susan J. Guzman,4
Kelly L. Close,1, 2 and Richard Wood3
1The diaTribe Foundation, San Francisco,
CA
2Close Concerns, San Francisco, CA
3dQ&A Market Research, Inc., San
Francisco, CA
4Behavioral Diabetes Institute, San Diego,
CA
Corresponding author: Richard Wood,
richard.wood@d-qa.com
*N.F.L. and A.S.B. contributed equally to
this work
†A.E.F. is currently afliated with BioSeek
Division, DiscoverX Corp., South San
Francisco, CA
https://doi.org/10.2337/cd16-0020
©2017 by the A merican Dia betes As sociat ion.
Readers may us e this article as long as the work
is properly cited, the use i s educationa l and not
for prot, and the wo rk is not altered. S ee http://
creativecomm ons.o rg/licen ses/by -nc -nd /3.0
for det ails .
IN BRIEF This study quantitatively measures diabetes stigma and its
associated psychosocial impact in a large population of U.S. patients with
type 1 or type 2 diabetes using an online survey sent to 12,000 people with
diabetes. A majority of respondents with type 1 (76%) or type 2 (52%) diabetes
reported that diabetes comes with stigma. Perceptions of stigma were
signicantly higher among respondents with type 1 diabetes than among those
with type 2 diabetes, with the highest rate in parents of children with type 1
diabetes (83%) and the lowest rate in people with type 2 diabetes who did
not use insulin (49%). Our results suggest that a disturbingly high percentage
of people with diabetes experience stigma, particularly those with type 1 or
type 2 diabetes who are on intensive insulin therapy. The experience of stigma
disproportionately affects those with a higher BMI, higher A1C, and poorer
self-reported blood glucose control, suggesting that those who need the most
help are also the most affected by stigma.
28 CLINICAL.DIABETESJOURNALS.ORG
FEATURE ARTICLE
traveling, maintaining friendships,
and adopting children resulting
from diabetes stigma (18,22). Feeling
stigmatized can also aect diabetes
management directly because patients
may be less likely to use or adopt rec-
ommended therapies that may be
apparent in public, such as taking
insulin injections, using an insulin
pump, or self-monitoring blood glu-
cose (23–25). In many cases, people
with diabetes avoid full disclosure
about their disease to both peers and
health care professionals because they
fear judgment or blame (18).
Type 1 and type 2 diabetes are
distinct in how the diseases arise and
how they are managed. Most of the
existing studies on diabetes stigma
have focused on type 2 diabetes
(18,22,24,26–29), with a minority
addressing stigma in type 1 diabetes
(18,30). Additionally, many of these
studies were qualitative and derived
from small population samples.
Although a small sample size allows
for an intimate understanding of
diabetes stigma, it is unclear whether
these ndings are representative of a
large and diverse diabetes population.
Here, we provide a robust quantita-
tive and qualitative assessment of
diabetes stigma in patients with type
1 or type 2 diabetes. Working with a
panel of diverse patients who answer
quarterly diabetes surveys, we inves-
tigated the existence, impact, and
common forms of diabetes stigma.
Design and Methods
Questions about diabetes stigma
were included in the dQ&A Market
Research quarterly survey that is ad-
ministered to a large panel of people
with diabetes.
Patient Recruitment and
Criteria
Inclusion criteria for the stigma anal-
ysis required respondents to be diag-
nosed with either type 1 or type 2 di-
abetes. For individuals with diabetes
who were <18 years of age, parents
answered on behalf of their children.
People with prediabetes or gestation-
al diabetes were excluded from this
analysis. Respondents received $5 for
completing the survey and were en-
tered into a drawing to win a $200
Amazon gift card.
Data Collection
Participants in the dQ&A patient
panel are asked routine survey ques-
tions that include self-reporting of
several health and demographic pa-
rameters, diabetes treatment behav-
iors, attitudes concerning diabetes
management, and questions about
product choices and product satisfac-
tion. e panel is invited to partici-
pate in four quarterly surveys per year
and may be asked to participate in
smaller surveys based on their patient
prole. For this study, six questions
were mixed with the normal survey,
addressing the presence, forms, and
impact of diabetes stigma. Fewer than
5% of survey questions require a re-
sponse to move forward, and none
of the stigma questions forced an
answer. e survey was programmed
and elded using Qualtrics software
(Qualtrics, Provo, Utah).
Of the 12,000 patients who re-
ceived this survey in the fourth quar-
ter of 2013, 5,422 (45%) responded to
the questions about diabetes stigma,
including 1,572 respondents with
type 1 diabetes and 3,850 respondents
with type 2 diabetes. Respondents
differed by demographics, diabe-
tes type, and diabetes management
(Table 1).
Respondents first indicated
whether they felt that diabetes was
associated with stigma (Table 2).
ose who answered “Yes” were asked
to identify the specic experiences of
stigma they have perceived with a
pick list (having a character aw or
fault, failure of personal responsibil-
ity, and being a burden on the health
care system) and a write-in option for
others. For the forms of stigma calcu-
lations, the proportion of responses
from people with type 1 diabetes was
adjusted down to a 7.5% population
benchmark to better reect type 1
prevalence within the general diabe-
tes population.
To evaluate the impact of diabetes
stigma, respondents used a 10-point
scale to indicate how strongly they
agreed with statements about the
impact of diabetes stigma on emo-
tional and social aspects and on
diabetes management, with 1 indi-
cating complete disagreement and
10 indicating very strong agreement.
ose who selected 9 or 10 were
dened as strongly agreeing with
the statement. A conditional variable
was created that counted respondents
who selected 9 or 10 for one of the
statements in each of the emotional,
social, and diabetes management
categories to be included in the anal-
ysis. Respondents were only counted
once in each category regardless of
whether they selected 9 or 10 for
multiple statements. Respondents
also answered an open-ended ques-
tion about recommendations to
reduce diabetes stigma. Open-ended
responses were reviewed to identify
key words and phrases that allowed
for categorization into psychosocial
themes. e majority of statements
were placed into one category of
best t, with some statements that
included multiple themes placed into
more than one category. All data were
analyzed using MarketSight software
(MarketSight, Newton, Mass.) and
Excel (Microsoft, Redmond, Wash.).
Statistical significance was tested
using a z test at the 95% condence
level.
Results
Prevalence of Diabetes Stigma
A significantly greater percentage
of respondents with type 1 diabetes
reported diabetes stigma than those
with type 2 diabetes (76 vs. 52%,
respectively; P <0.0001; Table 2).
Factors associated with signicant
increases in the perception of dia-
betes stigma among all respondents
(regardless of diabetes type) included
being female and having a graduate
or professional degree. ere were
no signicant dierences in reported
stigma across U.S. geographical re-
VOLUME 35 , NUMBER 1, WIN TER 2017 29
l i u e t a l .
FEATURE ARTICLE
gions or annual household incomes
in either diabetes population.
Among respondents with type 1
diabetes, parents of children with dia-
betes were signicantly more likely to
perceive diabetes stigma than adults
with diabetes (83 vs. 74%, P = 0.0 06).
Respondents with type 1 diabetes
were not segmented by therapy inten-
sity because 100% were on insulin,
and 92% were receiving intensive
therapy (using an insulin pump or
multiple daily injections [MDIs]).
e perception of diabetes stigma
among respondents with type 2 dia-
betes significantly increased with
greater therapy intensity: 49% of
non–insulin-using respondents
reported the presence of diabetes
stigma compared to 55% of those
receiving insulin (P <0.0005) and
61% of those receiving intensive insu-
lin therapy (P <0.0005). Several other
factors were associated with increased
perception of diabetes stigma in
type 2 diabetes respondents, includ-
ing A1C >7%, BMI 25 kg/m2,
self-reported uncontrolled blood glu-
cose, and self-reported presence of
depression (Table 2).
Forms of Stigma
e most widely reported experience
of diabetes stigma (regardless of dia-
betes type) was the perception of hav-
ing a character aw/failure of personal
responsibility (81%), followed by the
perception of being a burden on the
health care system (65%). e great-
est dierence between respondents
with type 1 diabetes and those with
type 2 diabetes related to misunder-
standings about diabetes, including
views that diabetes is contagious
or that all types of diabetes are the
same. Of respondents who specied
another form of stigma (open-ended
response), 38% with type 1 diabetes
vs. 16% with type 2 diabetes said they
experienced stigma from misunder-
standings about diabetes.
Consequences of Diabetes
Stigma
Figure 1 presents the percentage of re-
spondents who strongly agreed (scor-
TABLE 1. Baseline Characteristics of dQ&A Patient Panel
Respondents to the Stigma Survey (n = 5,422)
Respondents With
Type 1 Diabetes (%)
Respondents With
Type 2 Diabetes (%)
A1C
7%
>7%
49
51
61
39
Therapy
No insulin
Insulin
Pump/MDI
0
100
92
55
45
14
Age-group
Child
Adult
Senior
13
77
10
0
71
29
Sex
Male
Female
38
64
38
62
Employment
Employed
Not employed
Other
59
3
38
43
4
53
Ethnicity
White
Hispanic
Black
Asian
Native American
Other
92
3
1
2
1
1
85
3
7
2
2
1
Income
<$50,000 28 54
$50,000 to <$100,000 40 33
$100,000 32 14
U.S. Region
West
Midwest
South
Northeast
26
23
29
22
20
26
35
19
Education
High school
diploma/equivalent
13 16
Some college or
bachelor’s degree
59 65
Graduate or profes-
sional degree
28 18
30 CLINICAL.DIABETESJOURNALS.ORG
FEATURE ARTICLE
TABLE 2. Prevalence of Diabetes-Related Stigma (Percentage of Respondents Who Believe
Diabetes Comes With Social Stigma), by Diabetes Type, Management Regimen, and
Healthographic and Demographic Factors
Diabetes Type
and Therapy
Regimen
Typ e 1
Diabetes
% (n)Type 2 Diabetes % (n)P
All 76A (1,168) All 52D (1,9 95) A vs. D <0.0001
B vs. C 0.006
D vs. E 0.0261
D vs. F 0.038
D vs. G <0.0001
Adults 74B (1,001) No insulin 49E (1,03 8)
Parents 83C (166) Insulin 55F (957)
Pump/MDI 76 (1, 093) Pump/MDI 61G (336)
Healthographic/
Demographic Factors
Type 1 (% [n]) Type 1 PType 2 (% [n]) Type 2 P
A1C
7%
>7%
74 (528)
78 (577)
NS 49 (1,041)
56 (751)
<0.0005
BMI
25 kg/m2
>25 kg/m2
75 (422)
74 ( 542)
NS 47 (190 )
52 (1,792)
0.033
Self-reported blood glucose control
Not well controlled
Neutral
Well controlled
71 (42)
77A (430)
72B (497)
A vs. B 0.028
64A (210)
53B (856)
48C (926)
A vs. B <0.0005
A vs. C <0.0005
B vs. C 0.004
Diabetes duration
Diagnosis 10 years ago
Diagnosis >10 years ago
84 (397)
72 ( 771)
<0.0001 53 (1,099 )
50 (876)
NS
Sex
Male
Female
68 (379)
80 (787)
<0.0005 43 (638)
57 (1,352)
<0.0005
Depression
Yes
No
78 (16 0)
74 (811)
NS 58 (480)
50 (1,515)
<0.0005
Income
<$50,000
$50,000 to <$100,000
$100,000
75 (249)
76 (252)
79 (296)
NS
51 (846)
54 (537)
53 (220)
NS
U.S. Region
West
Midwest
South
Northeast
76 (296)
73 (252)
76 (335 )
76 (252)
NS
53 (397)
51 (511)
52 (688)
51 (379)
NS
Education
High school diploma/equivalent
Some college or bachelor’s degree
Graduate or professional degree
73A (143)
74B (675)
80C (342)
B vs. C 0.017
47A (291)
52B (1,301)
55C (391)
A vs. B 0.026
A vs. C 0.004
VOLUME 35 , NUMBER 1, WIN TER 2017 31
l i u e t a l .
FEATURE ARTICLE
ing 9 or 10 on a 10-point scale) that
other people’s perceptions of diabetes
have aected their:
Emotional life: experiencing
feelings of guilt, shame, blame,
embarrassment, and isolation
Social life: being open about
diabetes, finding a supportive
community, having a full social
life, and succeeding at work
Diabetes management: successful
management, adherence, good
choices
e impact of diabetes stigma on all
aspects of life was signicantly associ-
ated with a higher A1C (>7 vs. 7%),
higher BMI (25 vs. <25 kg/m2), and
poorer self-reported blood glucose
control (uncontrolled vs. controlled).
Respondents with type 1 or type 2
diabetes with uncontrolled blood
glucose reported the highest rates
of stigma in all aspects of their lives
(Figure 1D).
Emotional Life
Respondents with type 1 diabetes
(38%), particularly females (42%),
strongly agreed that other people’s
perceptions of diabetes have led them
to experience guilt, shame, blame,
embarrassment, and isolation. is
is in contrast to the lower levels of
reported emotional impact from
stigma in males with type 1 diabetes
(30%) and in respondents with type
2 diabetes (25%). Males with type 2
diabetes reported the lowest emotion-
al impact of diabetes stigma (18%).
Among respondents with type 2 dia-
betes, however, the impact of diabe-
tes stigma on the emotional aspects
of life was associated with increased
therapy intensity (20% in noninsulin
users vs. 30% in insulin users vs. 35%
in pump/MDI users) (Figure 1A).
Social Life
More than one in four respondents
with type 1 diabetes (22–26%) or
FIGURE 1. Consequences of diabetes-related stigma. The percentage of adult respondents with type 1 diabetes (Type 1,
n = 1,334), type 2 diabetes (Type 2 [all], n = 3,833), type 2 diabetes on pump or MDI therapy (Type 2 Pump/MDI, n = 544),
type 2 diabetes on insulin therapy (Type 2 Insulin, n = 1,721), type 2 diabetes not on insulin (Type 2 Noninsulin, n = 2,112),
females with type 1 diabetes (Type 1 F, n = 860), males with type 1 diabetes (Type 1 M, n = 472), females with type 2 diabetes
(Type 2 F, n = 2,349), and males with type 2 diabetes (Type 2 M, n = 1,468) who strongly agree (scoring 9 or 10 on a 10-point
scale) that other people’s perceptions of diabetes have caused them to experience difficulty with an emotional aspect (experiencing
feelings of guilt, shame, blame, embarrassment, and isolation), social aspect (being open about diabetes, finding a supportive
community, having a full social life, and succeeding at work), or diabetes management aspect (successful management, adherence,
and good choices) of living with diabetes. Statements are segmented by the factors associated with a significant increase in report-
ing of diabetes stigma (Table 1), including diabetes type, therapy regimen, and sex (A), A1C (B), BMI (C), and self-reported
blood glucose control (D).
32 CLINICAL.DIABETESJOURNALS.ORG
FEATURE ARTICLE
type 2 diabetes (23–30%) strongly
agreed that diabetes stigma negatively
aected their social life (Figure 1A).
Diabetes Management
There was a significant difference
between respondents with type 1 di-
abetes (17%) and those with type 2
diabetes (22%) who felt the negative
impact of diabetes stigma on diabe-
tes management (P <0.0005), with
a particular disparity in females with
type 1 diabetes compared to females
with type 2 diabetes (18 vs. 23%;
P = 0.003) (Figure 1A).
Ways to Reduce Diabetes
Stigma
Respondents shared recommenda-
tions for ways to reduce diabetes
stigma. Increasing public knowledge
about the general causes of diabetes
was the most common response,
mentioned by 46% of adults with
type 1 diabetes and 40% of respon-
dents with type 2 diabetes. To a lesser
extent, both respondents with type 1
diabetes (18%) and those with type
2 diabetes (19%) recommended in-
creased education about the manage-
ment of diabetes, such as how distinct
types of diabetes require dierent
treatments. ere was a stark dier-
ence in the percentage of respondents
who suggested that the naming for
diabetes should be changed (19% of
respondents with type 1 diabetes fa-
vored this change vs. 0% with type 2
diabetes).
Both respondents with type 1
diabetes (13%) and those with type
2 diabetes (14%) recommended
changes that have public impact (e.g.,
revising policies, creating school pro-
grams, changing nutritional options
in restaurants, and using social media,
celebrity campaigns, and fundrais-
ing/awareness actions). Respondents
with type 2 diabetes (15%) and those
with type 1 diabetes (10%) hoped
to reduce the perception that people
with diabetes are considered to be
incapable or to have limited abili-
ties by increasing awareness of the
social or work-related aspects of dia-
betes. Other respondents advocated
for greater general education about
diabetes, with this recommendation
mentioned more by those with type
2 diabetes (17%) than by those with
type 1 diabetes (9%).
Conclusions
Prevalence of Diabetes Stigma
ere is a limited understanding of
the prevalence of diabetes stigma in
the larger population, and few studies
have examined stigma in both type
1 and type 2 diabetes. By surveying
a large and diverse patient panel en-
gaged by dQ&A Market Research, we
found that a majority of people with
type 1 or type 2 diabetes reported that
they felt stigma associated with their
disease. is perception was signi-
cantly higher in individuals with type
1 diabetes compared to those with
type 2 diabetes and was particularly
elevated in females and the parents
of children with type 1 diabetes. We
found that increased perception of
diabetes stigma was associated with
being female and with having high-
er education levels. For those with
type 2 diabetes, perception of diabe-
tes stigma appeared to be associated
with uncontrolled diabetes and higher
visibility of the disease, as suggested
by the greater perception of diabetes
stigma among those with higher A1C
levels, higher BMI, poorly controlled
blood glucose, depression, and greater
therapy intensity.
e nding that respondents with
type 1 diabetes perceived more dia-
betes stigma than those with type 2
diabetes may be surprising, given pre-
vious research and public discussion
focused on the stigma associated with
type 2 diabetes (18,22,24,26–29).
In type 2 diabetes, diabetes stigma
increased with intensity of therapy.
With that in mind, it is perhaps not
surprising that individuals with type
1 diabetes felt more stigma than
others, given the need for MDI or
pump therapy, frequent blood glucose
testing, and/or use of a continuous
glucose monitoring device, all of
which are highly visible to others.
Experiences of Diabetes
Stigma
e most commonly reported expe-
rience of stigma was the perception
that diabetes is a character aw or
the result of a failure in personal re-
sponsibility. Patients have described
feeling judged and blamed by oth-
ers for causing their own diabetes
through overeating, poor diet, inac-
tivity, laziness, or being overweight or
obese. is is consistent with quali-
tative studies in type 2 diabetes that
have found shame and blame to be a
common theme associated with stig-
ma (17,18). However, we found this
form of stigma common to both re-
spondents with type 1 diabetes (83%)
and those with type 2 diabetes (81%),
demonstrating that this misconcep-
tion contributes to stigma for both
types of diabetes. is disparity may
be the result of less public awareness
of type 1 diabetes, leading to confu-
sion about whether it is dierent from
type 2 diabetes, whether it is conta-
gious, which therapies are needed
(e.g., diet and exercise vs. taking pills
vs. insulin therapy), and other misun-
derstandings about the etiology and
management of the disease.
e second most common form of
diabetes stigma felt by respondents in
both groups was the belief that peo-
ple with diabetes are a burden on the
health care system. is could be the
result of greater public focus on con-
trolling health care costs, high-prole
reports on the rising rates of type 2
diabetes, and the common perception
that diabetes is a failure of personal
responsibility rather than a combina-
tion of genetic, environmental, and
lifestyle factors.
Recommendations to Reduce
Diabetes Stigma
e most common recommendation
to reduce diabetes stigma was to fo-
cus on increasing diabetes education
for the general public, particularly
with regard to the causes of the var-
ious forms of the disease. Many in-
dividuals with type 1 diabetes, but
none with type 2 diabetes, suggested
VOLUME 35 , NUMBER 1, WIN TER 2017 33
l i u e t a l .
FEATURE ARTICLE
changing the naming of diabetes, po-
tentially indicating that people with
type 1 diabetes feel additional stigma
related to misperceptions of the dif-
ferent types of diabetes. Indeed, 19%
of adults and parents of children with
type 1 diabetes suggested changing
the naming and lexicon associated
with diabetes, specically disassoci-
ating type 1 from type 2 diabetes or
avoiding terms such as “obese” or “di-
abetic.” ese data support the need
to look critically at current awareness
eorts to ensure that they use appro-
priate language to educate the public
about what causes type 1 and type
2 diabetes and how the diseases are
managed.
Consequences of Diabetes
Stigma
Respondents with the poorest self-
reported degree of blood glucose
control reported the highest rates
of diabetes stigma that adversely af-
fected the social, emotional, and di-
abetes management aspects of their
lives. is was true for respondents
with either type 1 or type 2 diabetes,
suggesting that groups who need the
most help and support for their dia-
betes are also those most negatively
aected by diabetes stigma.
Limitations
Our study has several limitations.
First, all answers, including demo-
graphic data, were self-reported and
collected online. e questions most
inuenced by this issue are those that
use a scale scoring system of agree-
ment because each person has a dif-
ferent denition of agreement, and
comfort levels vary in sharing experi-
ences of diabetes stigma. Also, parents
or guardians of children with type 1
diabetes were allowed to take the sur-
vey on behalf of their child. ese an-
swers reect the parents’ perceptions
of diabetes stigma for their child and
not necessarily the children’s experi-
ences. Second, although we surveyed
a robust and diverse population, our
panel is not nationally representative;
respondents recruited from online
diabetes communities skew toward
those who may be more engaged in
their diabetes management and have
the resources to seek support online.
e panel’s representation of ethnic
minorities is lower than in the general
diabetes population.
Implications and Future
Directions
Our results suggest that a majority of
people with type 1 or type 2 diabetes
believe the disease comes with stig-
ma, which negatively aects many
aspects of daily life. People with type
1 diabetes appear to experience more
diabetes stigma than those with type
2 diabetes, although feelings of stigma
increase as therapy intensity increases
(i.e., from noninsulin to insulin to
intensive insulin therapy).
We hope this work prompts fur-
ther exploration of the dierences in
diabetes stigma experienced by people
with type 1 or type 2 diabetes, poten-
tially leading to identication of the
reasons why certain subpopulations
are at risk for increased perception
of stigma. Further research should
be performed on how diabetes
stigma aects daily life, which spe-
cic aspects of therapy are associated
with the greatest diabetes stigma,
and which therapies and technolo-
gies mitigate the negative feelings
that stigmatized people face.
ere is an overwhelming need for
increased public education and better-
informed conversation about what
causes diabetes and the daily expe-
rience of living with the disease. e
widely held misconception that peo-
ple with diabetes are responsible for
developing their disease or that they
have a character aw is the predomi-
nant form of stigma directed against
people with diabetes. ere may be
cases in which health care provider
communication that is perceived as
judging and blaming can contrib-
ute to diabetes stigma in patients,
particularly among those who are
struggling to attain eective disease
management. Health care profession-
als can play a key role in addressing
diabetes stigma through gaining a
better understanding of how stigma
aects daily life and helping to pro-
mote education about the disease.
Future education can target mis-
belief by emphasizing the complex
genetic, environmental, biological,
and lifestyle causes of both type
1 and type 2 diabetes, increasing
understanding of the challenges of
diabetes management, and examining
the negative impact of stigmatizing
“shame and blame” beliefs. Given
the high prevalence of stigma, the
diabetes community should develop
campaigns and interventions to help
address the issue.
Acknowledgments
The authors than k Bennet Dunlap, Man ny
Herna ndez, Scott Joh nson, and Kerr i
Sparling for inspiration on developing the
early questions for patients and for bringi ng
various important patient perspectives
to this project. Additional thanks go to
Jasmi ne Car valho and Vincent Wu of
dQ&A for assistance in prepar ing data for
the poster; to Rebecc a S. Xu, Jenny S. Tan,
and Sabr ina Lee of Clos e Concerns for
assistanc e with the bucketing of open-ended
responses for our analysis; and to Sarah
A. Odeh of Close Concerns for critically
reading the manusc ript.
Author Contributions
N.F.L. participated in the analysis, int er-
pretat ion, and presentation of t he data and
critical revision of the manuscr ipt. A.S.B.
participated in the study conce ption and
desig n; analysis and inter pretation of data;
and critica l revision of the m anuscript.
A.E.F. participated in the quantication,
analysis, and prese ntation of data and the
drafting of the manuscript. M.F.W. and
R.W. participat ed in the study c onception
and design; quantication of d ata; and crit-
ical revision of the manuscr ipt. S.J.G. and
K.L.C. part icipated in t he interpretation of
data and critical revision of the manuscript.
A.S.B., K.L.C. and R.W. sup erv ised the
project. R.W. is the g uara ntor of this work
and, as such, had full access to all the data
in the st udy and takes re sponsibility for the
integrity of t he data and the accuracy of the
data analysis.
Prior Publication
This work was presente d as a poster at
the American Diab etes Assoc iation’s 74th
Scientic Sessions in San Francis co, Calif.,
in June 2014.
Duality of Interest
No potential con icts of interest relevant to
this article were report ed.
34 CLINICAL.DIABETESJOURNALS.ORG
FEATURE ARTICLE
Funding
This work was supported by dQ&A Market
Research, The diaTribe Foundation, and
Close Concerns.
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... (33) Some participants perceived helplessness in DSME and DSMS because their condition remained unimproved, thus leading to frustration and demotivation, and eventually resulting in 'diabetes burnout' and neglect of DSME and DSMS. (34) Fear of social isolation from peers was evident; PWD did not want to be discriminated against or 'treated differently' compared with their peers and friends. (34,35) Nondisclosure of having DM during outings with friends or colleagues contributed to deviations from meal-time medication and dietary recommendations. ...
... (34) Fear of social isolation from peers was evident; PWD did not want to be discriminated against or 'treated differently' compared with their peers and friends. (34,35) Nondisclosure of having DM during outings with friends or colleagues contributed to deviations from meal-time medication and dietary recommendations. (36) Some of the participants became emotional as they told stories about their DM. ...
... The negative feelings revolving around fear, rejection, guilt, anxiety and low-esteem can result in depression. (34) This proved that psychological aspects and social stigma of PWD needed to be addressed to alleviate this emotional distress through patient empowerment and motivation and increased social support and community education. (1,7,15) The many interesting perceptions and values on self-management for DM encountered throughout this study could be because of the cultural and educational background of the participants. ...
... Roughly 90% of the 245,000 people who have diabetes in the Norwegian population are diagnosed with T2D, making it by far the most common of the two (Aasvold 2020). While both the major types of diabetes are associated with psychological affects of shame and guilt, a study of a US population found that perceptions of stigma were significantly higher among people with T1D than among those with T2M (Liu et al. 2017). ...
... Our analysis also has important implications for our understanding of diabetesrelated stigma. As we have already established, diabetes stigma often centres on the question of personal responsibility and the degree to which the afflicted is perceived as lazy and irresponsible (Liu et al. 2017;Schabert et al. 2013). Previous research has also found that the impact of stigma depends on the prevalence of T1D and the association with T2D (Jaacks et al. 2015;Browne et al. 2014), which may explain why our informants were compelled to repeatedly differentiate between the two conditions. ...
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