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Stigma in People With Type 1 or Type 2 Diabetes

  • 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
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,
2Close Concerns, San Francisco, CA
3dQ&A Market Research, Inc., San
Francisco, CA
4Behavioral Diabetes Institute, San Diego,
Corresponding author: Richard Wood,
*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
©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.
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
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
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 .
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
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 (%)
No insulin
Not employed
Native American
<$50,000 28 54
$50,000 to <$100,000 40 33
$100,000 32 14
U.S. Region
High school
13 16
Some college or
bachelor’s degree
59 65
Graduate or profes-
sional degree
28 18
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
Typ e 1
% (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)
Demographic Factors
Type 1 (% [n]) Type 1 PType 2 (% [n]) Type 2 P
74 (528)
78 (577)
NS 49 (1,041)
56 (751)
25 kg/m2
>25 kg/m2
75 (422)
74 ( 542)
NS 47 (190 )
52 (1,792)
Self-reported blood glucose control
Not well controlled
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)
68 (379)
80 (787)
<0.0005 43 (638)
57 (1,352)
78 (16 0)
74 (811)
NS 58 (480)
50 (1,515)
$50,000 to <$100,000
75 (249)
76 (252)
79 (296)
51 (846)
54 (537)
53 (220)
U.S. Region
76 (296)
73 (252)
76 (335 )
76 (252)
53 (397)
51 (511)
52 (688)
51 (379)
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 .
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
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).
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
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
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%).
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
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 .
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
Consequences of Diabetes
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.
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
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.
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.
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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In this study, we analyse how collective illness identities are created and sustained among people with type 1 diabetes using sociological perspectives on identity formation and symbolic boundaries. Drawing on 24 in-depth interviews, we show how collective illness identities are established and maintained through both inclusionary and exclusionary mechanisms. Informants discussed their collective illness identity by invoking common experiences and interests while also establishing experiential, biomedical and moral boundaries that distinguished them from other social groups. In particular, we highlight how the informants distanced themselves from type 2 diabetes on the basis of the latter’s status as a ‘lifestyle disease’. Our findings demonstrate the importance of boundary work for collective illness identity formation and the management of stigma, and the ambivalent relationship between illness identities and biomedical knowledge.
... Other studies have also indicated poor adherence in type 2 diabetes [49]. With respect to type 2 diabetes, people experience more stigma when on insulin than when on a noninsulin anti-diabetic drug [50]. A qualitative systematic review found that health care providers often doubt their patients' ability to self-manage their diabetes, consequently preferring a paternalistic approach [51]. ...
BACKGROUND: Diabetes mellitus is a major global public health issue where self-management is critical to reducing disease burden. Social media has been a powerful tool to understand public perceptions. Public perception of the drugs used for the treatment of diabetes may be useful for orienting interventions to increase adherence. OBJECTIVE: The aim of this study was to explore the public perceptions of anti-diabetic drugs through the analysis of health-related tweets mentioning such medications. METHODS: This study uses an infoveillance social listening approach to monitor public discourse using Twitter data. We coded 4000 tweets from January 1, 2019 to October 1, 2019 containing key terms related to anti-diabetic drugs by using qualitative content analysis. Tweets were coded for whether they were truly about an anti-diabetic drug and whether they were health-related. Health-related tweets were further coded based on who was tweeting, which anti-diabetic drug was being tweeted about, and the content discussed in the tweet. The main outcome of the analysis was the themes identified by analyzing the content of health-related tweets on anti-diabetic drugs. RESULTS: We identified 1664 health-related tweets on 33 anti-diabetic drugs. A quarter (415/1664) of the tweets were confirmed to have been from people with diabetes, 17.9% (298/1664) from people posting about someone else, and 2.7% (45/1664) from health care professionals. However, the role of the tweeter was unidentifiable in two-thirds of the tweets. We identified 13 themes, with the health consequences of the cost of anti-diabetic drugs being the most extensively discussed, followed by the efficacy and availability. We also identified issues that patients may conceal from health care professionals, such as purchasing medications from unofficial sources. CONCLUSIONS: This study uses an infoveillance approach using Twitter data to explore public perceptions related to anti-diabetic drugs. This analysis gives an insight into the real-life issues that an individual faces when taking anti-diabetic drugs, and such findings may be incorporated into health policies to improve compliance and efficacy. This study suggests that there is a fear of not having access to anti-diabetic drugs due to cost or physical availability and highlights the impact of the sacrifices made to access anti-diabetic drugs. Along with screening for diabetes-related health issues, health care professionals should also ask their patients about any non-health-related concerns regarding their anti-diabetic drugs. The positive tweets about dietary changes indicate that people with type 2 diabetes may be more open to self-management than what the health care professionals believe.
Background: Social media is used by young adult patients for social connection and self- identification. Objective: This study compares the social media habits of young adults with inflammatory bowel disease (IBD) and type 1 diabetes (T1D). Methods: This is a cross-sectional study of subjects from Boston Children's Hospital outpatient IBD and diabetes clinics. Patients above age 18 were invited to complete a brief anonymous survey, which asked about the various ways they use several social media platforms. Results: Responses were received from 108 for a 92.5% response rate, evenly split between disease type. Eighty-three percent of participants spent at least 30 minutes per day on social media, most commonly on Instagram and Facebook. While the content varied based on the platform, patients with IBD posted or shared content related to their disease significantly less than those with T1D (23% vs 38%, P=0.02) Among Instagram users, IBD patients were less likely to engage with support groups (22% vs 56%, P=0.04). Among Twitter users, IBD patients were less likely to seek disease information (77% vs 29%, P=0.005) Among Facebook users, IBD patients were less likely to post about research and clinical trials (31% vs 65%, P=0.04) or for information seeking (49% vs 87%, P=0.003), IBD patients were also less likely to share their diagnosis with friends or family in person. Conclusions: Young adults with IBD were less willing to share diagnosis, post or explore disease on social media compared to those with T1D. This could lead to a sense of isolation and should be further explored. Clinicaltrial:
Importance: Stigmatizing language in the electronic health record (EHR) may alter treatment plans, transmit biases between clinicians, and alienate patients. However, neither the frequency of stigmatizing language in hospital notes, nor whether clinicians disproportionately use it in describing patients in particular demographic subgroups are known. Objective: To examine the prevalence of stigmatizing language in hospital admission notes and the patient and clinician characteristics associated with the use of such language. Design, setting, and participants: This cross-sectional study of admission notes used natural language processing on 48 651 admission notes written about 29 783 unique patients by 1932 clinicians at a large, urban academic medical center between January to December 2018. The admission notes included 8738 notes about 4309 patients with diabetes written by 1204 clinicians; 6197 notes about 3058 patients with substance use disorder by 1132 clinicians; and 5176 notes about 2331 patients with chronic pain by 1056 clinicians. Statistical analyses were performed between May and September 2021. Exposures: Patients' demographic characteristics (age, race and ethnicity, gender, and preferred language); clinicians' characteristics (gender, postgraduate year [PGY], and credential [physician vs advanced practice clinician]). Main outcome and measures: Binary indicator for any vs no stigmatizing language; frequencies of specific stigmatizing words. Linear probability models were the main measure, and logistic regression and odds ratios were used for sensitivity analyses and further exploration. Results: The sample included notes on 29 783 patients with a mean (SD) age of 46.9 (27.6) years. Of these patients, 1033 (3.5%) were non-Hispanic Asian, 2498 (8.4%) were non-Hispanic Black, 18 956 (63.6%) were non-Hispanic White, 17 334 (58.2%) were female, and 2939 (9.9%) preferred a language other than English. Of all admission notes, 1197 (2.5%) contained stigmatizing language. The diagnosis-specific stigmatizing language was present in 599 notes (6.9%) for patients with diabetes, 209 (3.4%) for patients with substance use disorders, and 37 (0.7%) for patients with chronic pain. In the whole sample, notes about non-Hispanic Black patients vs non-Hispanic White patients had a 0.67 (95% CI, 0.15 to 1.18) percentage points greater probability of containing stigmatizing language, with similar disparities in all 3 diagnosis-specific subgroups. Greater diabetes severity and the physician-author being less advanced in their training was associated with more stigmatizing language. A 1 point increase in the diabetes severity index was associated with a 1.23 (95% CI, .23 to 2.23) percentage point greater probability of a note containing stigmatizing language. In the sample restricted to physicians, a higher PGY was associated with less use of stigmatizing language overall (-0.05 percentage points/PGY [95% CI, -0.09 to -0.01]). Conclusions and relevance: In this cross-sectional study, stigmatizing language in hospital notes varied by medical condition and was more often used to describe non-Hispanic Black patients. Training clinicians to minimize stigmatizing language in the EHR might improve patient-clinician relationships and reduce the transmission of bias between clinicians.
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Self-monitoring of blood glucose (SMBG) helps to improve glycemic control and empowerment of people with diabetes. It is particularly useful for people with diabetes who are using insulin as it facilitates insulin titration and detection of hypoglycemia. Despite this, the uptake of SMBG remains low in many countries, including Malaysia. This study aimed to explore the barriers and facilitators to SMBG, in people with type 2 diabetes using insulin. Qualitative methodology was employed to explore participants' experience with SMBG. Semistructured, individual in-depth interviews were conducted on people with type 2 diabetes using insulin who had practiced SMBG, in the primary care clinic of a teaching hospital in Malaysia. Participants were purposively sampled from different age groups, ethnicity, education level, and level of glycemic control (as reflected by the glycated hemoglobin [HbA1c]), to achieve maximum variation in sampling. All interviews were conducted using a topic guide and were audio-recorded, transcribed verbatim, checked, and analyzed using a thematic approach. A total of 15 participants were interviewed, and thematic saturation was reached. The factors that influenced SMBG were mainly related to cost, participants' emotion, and the SMBG process. The barriers identified included: frustration related to high blood glucose reading; perception that SMBG was only for insulin titration; stigma; fear of needles and pain; cost of test strips and needles; inconvenience; unconducive workplace; and lack of motivation, knowledge, and self-efficacy. The facilitators were: experiencing hypoglycemic symptoms; desire to see the effects of dietary changes; desire to please the physician; and family motivation. Participants' perceptions of the purpose of SMBG, the emotions associated with SMBG, and the complexity, pain, and cost related to SMBG as well as personal and family motivation are the key factors that health care providers must consider when advising people with diabetes on SMBG.
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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. A qualitative study using semistructured interviews, which were audio recorded, transcribed and subject to thematic analysis. This study was conducted in non-clinical settings in metropolitan and regional areas in the Australian state of Victoria. Participants were recruited primarily through the state consumer organisation representing people with diabetes. All adults aged ≥18 years with T2DM living in Victoria were eligible to take part. Twenty-five adults with T2DM participated (12 women; median age 61 years; median diabetes duration 5 years). A total of 21 (84%) participants indicated that they believed T2DM was stigmatised, or reported evidence of stigmatisation. Specific themes about the experience of stigma were feeling blamed by others for causing their own condition, being subject to negative stereotyping, being discriminated against or having restricted opportunities in life. Other themes focused on sources of stigma, which included the media, healthcare professionals, friends, family and colleagues. Themes relating to the consequences of this stigma were also evident, including participants' unwillingness to disclose their condition to others and psychological distress. Participants believed that people with type 1 diabetes do not experience similar stigmatisation. Our study found evidence of people with T2DM experiencing and perceiving diabetes-related social stigma. Further research is needed to explore ways to measure and minimise diabetes-related stigma at the individual and societal levels, and also to explore perceptions and experiences of stigma in people with type 1 diabetes.
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Obese individuals are blamed for their excess weight based on causal attribution to the individual. It is unclear whether obese individuals of different age groups and gender are faced with the same amount of stigmatization. This information is important in order to identify groups of individuals at risk for higher stigmatization and discrimination. A telephone interview was conducted in a representative sample of 3,003 participants. Experimental manipulation was realized by vignettes describing obese and normal-weight children, adults and senior citizens. Stigmatizing attitudes were measured by semantic differential. Causal attribution was assessed. Internal factors were rated with highest agreement rates as a cause for the vignette's obesity. Lack of activity behavior and eating too much are the most supported causes. Importance of causes differed for the different vignettes. For the child, external causes were considered more important. The overweight vignette was rated consistently more negatively. Higher educational attainment and personal obesity were associated with lower stigmatizing attitudes. The vignette of the obese child was rated more negatively compared to that of an adult or senior citizen. Obesity is seen as a controllable condition, but for children external factors are seen as well. Despite this finding, they are faced with higher stigmatizing attitudes in the general public, contradicting attribution theory assumptions. Internal and external attribution were found to be inter-correlated. Obese children are the population most at risk for being confronted with stigmatization, making them a target point in stigma-reduction campaigns.
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Epilepsy research efforts have primarily focused on medical treatment and physical management of epilepsy; however, to provide comprehensive care, efforts cannot focus solely on physical manifestations of epilepsy. Research findings show that people with epilepsy face many challenges that can negatively affect quality of life (QOL). In this descriptive study, we examined the individual relationships between depressive symptoms, stigma, social support and regimen-specific support and QOL in adults with epilepsy. Study data were obtained from a subset of patients (N = 147) who participated in a longitudinal study of adult patients with epilepsy. Measures of QOL, depressive symptoms, stigma, social support and regimen-specific support were analyzed to answer the research questions. The results of correlational analyses revealed statistically significant negative correlations between depressive symptoms, stigma and sometimes regimen-specific support and QOL and statistically significant positive correlations between social support and QOL. A hierarchical multiple linear regression model revealed that depressive symptoms accounted for the most variance in QOL. Psychosocial variables measured 3 months prior to QOL were entered into a hierarchical multiple linear regression model, revealing that depressive symptoms, stigma and social support can be used to predict QOL at a later time.
Purpose: The purpose of this article is to increase awareness regarding the social problem of obesity stigma and its effects on persons with type 2 diabetes mellitus (T2DM). In addition, practical strategies to dispel stigma and improve diabetes care that nurse practitioners (NPs) can integrate into practice will be introduced. Data sources: Thorough review of the literature was conducted including MEDLINE, PsycINFO and CINAHL, spanning the years 1994-2008. Conclusions: Obesity and diabetes are both epidemics that demand immediate attention; however, obesity stigma can act as a barrier to ongoing management of both conditions. Obese patients with T2DM may feel responsible not only for their weight but also their diabetes. Therefore, NPs can employ specific counseling strategies that may be beneficial with T2DM obese patients to improve continuity of care while decreasing weight-related stigmatization. Implications for practice: Negative attitudes toward obesity by healthcare professionals can act as a barrier to diabetes management. Primary care providers including NPs must begin through self-reflection to recognize their own attitudes regarding weight-stigma and how these attitudes may affect their patients. By implementing effective strategies to reduce weight bias, an environment conducive to diabetes and lifestyle modification management may prevent patients from forgoing care.
Background: Reluctance to use insulin is a well-established problem among patients with type 2 diabetes mellitus (DM). Many of the concerns that prompt patients to resist insulin are rooted in myths that arose because of the medical profession's difficult history with this medication.Objectives: The goals of this article were to articulate those myths, describe their impact on patient and clinician reasoning, and explain how clinicians can reassure patients and help them make a more informed choice about insulin therapy.Methods: Materials used for this article were identified through a search of PubMed for the years 1993 to 2007. English-language articles were selected using the search terms diabetes mellitus, psychological insulin barriers, and clinical inertia.Results: There are patient- and physician-specific barriers to insulin initiation that providers must be aware of to successfully counsel patients. Physician issues include worries regarding the effect insulin initiation in patients will have on practice resources (eg, impact patient crises have during initial stages of insulin therapy, concern there is inadequate time or personnel to teach insulin therapy); fear that patients will become angry, alienated, or leave the practice; and concern about the potential for patient hypoglycemia and weight gain. Patient-centered issues focus on the fear of weight gain, social embarrassment/stigma, hypoglycemia, lifestyle changes/restrictions, painful injections, and feelings of failure and guilt that treatment has progressed to needing insulin. Clinicians can alleviate many patient concerns by becoming aware of the personal and social dimensions of insulin therapy. Numerous strategies are available for the clinician to use for successful implementation of insulin therapy in patients with type 2 DM.Conclusion: By investigating the new, simpler, more straightforward algorithms for initiating insulin and using them in patient care, it will be possible to help patients make an informed decision when the time comes to start insulin therapy.
A comprehensive understanding of the social and psychological impact of diabetes mellitus is important for informing policy and practice. One potentially significant, yet under-researched, issue is the social stigma surrounding diabetes. This narrative review draws on literature about health-related stigma in diabetes and other chronic conditions in order to develop a framework for understanding diabetes-related stigma. Our review of the literature found that people who do not have diabetes assume that diabetes is not a stigmatized condition. In contrast, people with diabetes report that stigma is a significant concern to them, experienced across many life domains, e.g., in the workplace, in relationships. The experience of diabetes-related stigma has a significant negative impact on many aspects of psychological well-being and may also result in sub-optimal clinical outcomes for people with diabetes. We propose a framework that highlights the causes (attitudes of blame, feelings of fear and disgust, and the felt need to enforce social norms and avoid disease), experiences (being judged, rejected, and discriminated against), and consequences (e.g., distress, poorer psychological well-being, and sub-optimal self-care) of diabetes-related stigma and also identifies potential mitigating strategies to reduce diabetes-related stigma and/or enhance coping and resilience amongst people with diabetes. The systematic investigation of the experiences, causes, and consequences of diabetes-related stigma is an urgent research priority.
Although stigma is considered a major barrier to effective responses to the HIV/AIDS epidemic, stigma reduction efforts are relegated to the bottom of AIDS programme priorities. The complexity of HIV/AIDS-related stigma is often cited as a primary reason for the limited response to this pervasive phenomenon. In this paper, we systematically review the scientific literature on HIV/AIDS-related stigma to document the current state of research, identify gaps in the available evidence and highlight promising strategies to address stigma. We focus on the following key challenges: defining, measuring and reducing HIV/AIDS-related stigma as well as assessing the impact of stigma on the effectiveness of HIV prevention and treatment programmes. Based on the literature, we conclude by offering a set of recommendations that may represent important next steps in a multifaceted response to stigma in the HIV/AIDS epidemic.
Type 1 diabetes is an autoimmune disorder afflicting millions of people worldwide. Once diagnosed, patients require lifelong insulin treatment and can experience numerous disease-associated complications. The last decade has seen tremendous advances in elucidating the causes and treatment of the disease based on extensive research both in rodent models of spontaneous diabetes and in humans. Integrating these advances has led to the recognition that the balance between regulatory and effector T cells determines disease risk, timing of disease activation, and disease tempo. Here we describe current progress, the challenges ahead and the new interventions that are being tested to address the unmet need for preventative or curative therapies.