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Short Report

Psychopathology 2014;47:127132 Received: December 12, 2012


Accepted after revision: March 6, 2013
DOI: 10.1159/000350505
Published online: July 5, 2013

Self-Perceived Stigmatization in Female Patients


with Anorexia Nervosa Results from an Explorative
Retrospective Pilot Study of Adolescents
A. Maier a J.-P. Ernst a S. Mller c D. Gross a F.D. Zepf b, d, e
B. Herpertz-Dahlmann b U. Hagenah b
a
Institute of History, Theory and Ethics in Medicine, and b Department of Child and Adolescent Psychiatry,
Psychosomatics and Psychotherapy, University Hospital Aachen, RWTH Aachen University, Aachen, c Department
of Psychiatry and Psychotherapy, Division of Mind and Brain Research, Charit Universittsmedizin Berlin, Berlin,
d
Institute for Neuroscience and Medicine, Jlich Research Centre, Jlich, and e JARA Translational Brain Medicine,
Aachen and Jlich, Germany

Key Words were reported. A remarkable degree of self-stigmatization,


Anorexia nervosa Stigmatization Discrimination as indexed by high rates of agreement to stigmatizing state-
Adolescents ments, was detected. Approximately one third of the par-
ticipants reported delayed initiation of treatment due to fear
of stigmatization and discrimination. Conclusion: Stigmati-
Abstract zation plays a decisive role in young patients with AN and
Background: The stigma of mental illness has been identi- impacts their motivation to seek professional help and en-
fied as an important barrier to treatment and recovery. Previ- gage in treatment. Clinicians should be aware of the stigma-
ous research reported the stigmatization of individuals with tization related to eating disorders and its burden for affect-
eating disorders by both health professionals and the gen- ed patients. Copyright 2013 S. Karger AG, Basel
eral public. The aim of this pilot study was to empirically as-
sess the previous stigmatization and discrimination experi-
ences of young female patients with anorexia nervosa (AN)
using a retrospective explorative approach. Methods: An in- Introduction
house questionnaire that was developed to survey experi-
ences of stigmatization was mailed to 75 former adolescent Anorexia nervosa (AN) is considered to be one of the
patients with AN. The mean time of assessment after dis- severest psychiatric disorders. It is associated with a sig-
charge was 5.6 1.2 years. The patients were asked to re- nificantly increased morbidity and mortality rate com-
spond anonymously. The response rate was approximately pared to other psychiatric disorders [1] and is the third
48% (n = 36). Results: Feelings that society held negative
stereotypes of individuals with AN, concrete experiences of
stigmatization and discrimination, and rejection by peers A. Maier and J.-P. Ernst contributed equally to this work.

2013 S. Karger AG, Basel Dr. J.-P. Ernst


02544962/13/04720127$38.00/0 Institute of History, Theory and Ethics in Medicine
RWTH Aachen University
E-Mail karger@karger.com
Wendlingweg 2, DE52074 Aachen (Germany)
www.karger.com/psp
E-Mail jernst@ukaachen.de
most common chronic illness in adolescence [1, 2]. Early ticipate in the study. Further inclusion criteria were a minimum age
treatment is associated with an improved prognosis, par- of 12 years and female sex. The period between treatment initiation
and the beginning of the study ranged from 29 to 90 months (mean:
ticularly in regard to beneficial outcomes [3]. A recent 52.5, SD: 14.7). Invitations to participate were delivered to the pa-
community-based follow-up study indicated that 18 years tients anonymously. A total of 36 former patients participated in
after the onset of AN, 20% of patients had not received psy- the study, reflecting a response rate of approximately 48%. The av-
chiatric treatment or other professional support for eating erage age of the analyzed sample at the time of the survey was 19.3
disorder symptoms or comorbid psychiatric disorders [4]. years (SD: 2.0 years, min.: 15 years, max.: 24 years). Concerning
education, 16% of the participants indicated that their educational
In addition to a lack of evidence-based treatment options, level was low or medium (10 years of education) and 58% that it
stigmatization is associated with a delayed initiation of was high (minimum of 13 years of education), and 26% of the par-
treatment [5]. In general, the term stigmatization refers to ticipants were studying at university (16% of the participants did
the process of applying certain negative stereotypes to spe- not answer this question). No detailed information on these former
cific groups of individuals and establishing a demarcation patients current state of health, weight or height was available. The
study protocol was evaluated and approved by the Ethics Commit-
line between insiders and outsiders [6]. The relevance of tee of the Faculty of Medicine at the RWTH University Aachen.
stigmatization in the context of psychiatric disorders was
demonstrated in several studies [7, 8]. Common conse- Assessment Tool
quences of stigmatization are disadvantages in finding An in-house preliminary pilot questionnaire entitled Ques-
partners [9] and jobs [10], problems with employment and tionnaire on stigmatization in patients with anorexia nervosa
(QSAN, developed by U.H., J.P.E. and S.M.) was implemented. In
income [11], low self-esteem [12], a reduced quality of life addition to questions on stigmatization, the QSAN comprised
[13], and a reduced usage of medical care [14]. Most pub- items on the course of the illness. Some of the questions were ex-
lished studies on stigmatization focused on patients with tracted from well-established scales and questionnaires such as the
schizophrenia and depression. There is a scarcity of data on Devaluation-Discrimination Scale [12], the Consumer Experienc-
the role of stigmatization in patients with eating disorders. es of Stigma Questionnaire [24], the Opinions Scale [15] and the
Revised Illness Perception Questionnaire [25]. These questions
Preliminary evidence indicated that blame might serve were adapted and specifically modified for people with AN. Most
as an important factor in stigmatization. In line with this, of the questions had a closed format, with only a small number of
laypeople may think that people with eating disorders open response questions. For most of the closed questions, a
could pull themselves together if they really want[ed] it 4-point Likert scale was used to determine either the frequency of
[1518], have only themselves to blame [1519], and the item (never, rarely, often, very often) or the degree to which a
patient agreed with a statement (totally disagree, rather disagree,
might only wish to get attention [17, 19]. Research rather agree, totally agree). The questionnaire included 100 ques-
showed that even physicians blame patients with AN for tions, some of which are not relevant to the current issue and,
their eating disorder symptoms and associated behaviors therefore, are not presented in this paper.
[20]. Furthermore, the severity of AN is often underesti-
mated by laypeople [21]. Consequently, as shown by re- Data Analysis
The data were analyzed on a descriptive level. When partici-
search conducted with patients with depressive symp- pants placed a mark between two response options, the more stig-
toms, stigmatization poses a major obstacle to seeking and matizing value was counted. The relative frequencies (valid per-
attending therapy and treatment [14, 22, 23]. Thus far, cent) were calculated for all questions. Missing data were not im-
previous studies primarily addressed aspects of stigmati- plemented in a pairwise manner.
zation in patients with AN from the point of view of unaf-
fected people. This is the first pilot study to target stigma-
tization from the viewpoint of patients with AN and assess Results
the consequences of stigma using an explorative approach.
This study uses an in-house questionnaire that was devel- Participants reported receiving considerable criticism
oped to survey adolescent patients experiences with stig- because of their eating disorder symptoms. Such criticism
matization and discrimination on a descriptive level. was mainly formulated by the patients parents (68%),
was less commonly verbalized by their boyfriends, physi-
cians, strangers/in the public, siblings, classmates/col-
Methods leagues and friends, and was not expressed by their teach-
ers and other superiors (fig.1). A substantial group of re-
Study Sample
Seventy-five former in- and outpatients of a major child and spondents reported that they were (very) often treated as
adolescent mental health service who had previously been diag- less competent, primarily by their parents (33%), but not
nosed as suffering from AN (DSM-IV criteria) were invited to par- by their friends (fig.2).

128 Psychopathology 2014;47:127132 Maier/Ernst/Mller/Gross/Zepf/


DOI: 10.1159/000350505 Herpertz-Dahlmann/Hagenah
Who has criticized you for your eating disorder?

Parents 12.9 19.4 41.9 25.8

Boyfriend 50.0 25.0 5.0 20.0

Siblings 34.6 50.0 7.7 7.7

Physicians 59.3 18.5 14.8 7.4

Friends 48.1 44.4 3.73.7

Strangers/in public 70.4 11.1 14.8 3.7

Classmates/colleagues 69.2 23.1 7.7

Teachers/superiors 92.3 7.7

0% 20% 40% 60% 80% 100%


Never Rarely Frequently Very frequently

Fig. 1. The descriptive response data obtained from former patients with AN to questions on criticism related to
eating disorder symptoms as assessed with the QSAN.

Are you treated as being less capable once people learn about your eating disorder?

By parents 36.7 30.0 16.7 16.7

By physicians 42.3 34.6 15.4 7.7

By teachers/superiors 61.5 23.1 11.5 3.8

By strangers/in public 72.0 4.0 24.0

By classmates/colleagues 66.7 25.0 4.2 4.2

By boyfriend 70.0 15.0 15.0

By siblings 68.0 24.0 4.04.0

By friends 65.4 34.6

0% 20% 40% 60% 80% 100%


Never Rarely Frequently Very frequently

Fig. 2. The descriptive response data obtained from former patients with AN to questions on reactions of the
environment to eating disorder symptoms as assessed with the QSAN.

Stigmatization and Anorexia Nervosa Psychopathology 2014;47:127132 129


DOI: 10.1159/000350505
Participants reported that they received both the Discussion
most criticism and the most support from their parents.
Teachers or superiors were often described as ignoring The present pilot study surveyed the stigmatization
the patients problems. Admiration and jealousy were and discrimination experiences of former patients with
also observed, but only from friends and classmates/col- AN. Questions about stigmatization and discrimination
leagues. Respondents also reported withdrawal, particu- in general were more often affirmed than those about
larly by classmates/colleagues, siblings, and friends. concrete personal experiences of prejudicial factors. Most
More than 50% of participants confirmed that criticism participants described positive experiences with friends
because of their eating disorder symptoms was a great who knew about the disorder, but only half agreed with
burden. More than 25% of respondents agreed with the the statement that most people would accept someone
statement that others thought negatively about them be- with AN as a close friend. Such inconsistencies might in-
cause they had received psychiatric or psychotherapeu- dicate that stigmatization is not limited to concrete expe-
tic treatment. At least 50% of the participants felt stig- riences, but is also associated with a more general percep-
matized by the public opinion, resulting in disadvan- tion of stigma related to mental illness. Here, a retrospec-
tages in everyday life. Online supplementary tables S1 tive approach was implemented, which may be an
and S2 (for all online suppl. material, see www.karger. advantage for this particular research question because
com/doi/10.1159/000350505) present the descriptive acutely ill patients with AN often deny their illness and
data on such aspects of stigmatization. thus might not be willing to be confronted with its conse-
Most of the patients reported feelings of alienation quences, including stigmatization. The results of this
and self-blame. Stereotypes toward AN were affirmed study suggest a substantial amount of perceived stigmati-
to a considerable degree (online suppl. table S3). More zation and discrimination toward patients with AN, de-
than one quarter of respondents (29%) indicated that spite the relatively young age of the subjects. Addition-
patients with AN were to blame for their condition ally, a remarkable degree of self-stigmatization, as in-
(question 37) and could pull themselves together if dexed by high rates of agreement with stigmatizing
they wished to do so (30%, question 38). Nearly half of statements, was detected. These rates were similar to or
them (49%) held the opinion that girls and young wom- even higher than rates in the general population [15, 16]
en with AN were attempting to receive attention with or among students [19]. The high rates of patients feel-
their symptoms. Furthermore, participants agreed with ings of responsibility for their disorder and concealing
negative stereotypes about the character and behavior their symptoms suggest that they applied at least some of
of girls and young women with AN. A significant por- these stereotypes to themselves.
tion of participants stated that their mothers (27%) and Approximately one third of the participants stated that
(to a lesser degree) fathers (21%) were (very) often held they had experienced delayed treatment due to fear of
responsible or criticized for the adolescents eating dis- stigmatization or discrimination. These results provide
order. Many former patients believed that their parents preliminary evidence that the stigmatization of patients
felt responsible for the disorder (mothers: 55%; fathers: with AN can lead to delayed treatment initiation. Similar
39%). Most participants assumed that their mothers effects were found in studies on stigmatization toward
(77%) and (to a lesser degree) fathers (58%) experi- patients with depression [22, 23]. The average delay be-
enced stress due to disease-related accusations and crit- tween disease onset and the first consultation with a doc-
icism. tor was shorter than that in previous studies [2628], pos-
Approximately one third of participants (31%) re- sibly because participants in the present study were mi-
ported that they waited a considerable time before visit- nors at that time and their parents could persuade them
ing a physician due to fear of being criticized and to visit a doctor. Nevertheless, one third of the patients
blamed. A similar proportion of participants waited to had waited to consult a doctor or initiate treatment due
undergo treatment due to fear of being excluded or de- to fear of stigmatization. This finding supports the hy-
graded (34%; see online suppl. tables S4S6). The aver- pothesis that stigmatization is an underlying reason for
age period between the onset of the disease and thefirst the fact that more than 20% of patients with AN remain
contact with a physician was 8.2 months (SD: 6.1 untreated until 5 years after the onset of the disorder [28].
months). The average delay between the onset of dis- Several important limitations must be considered. Due
ease and the start of treatment was 9.3 months (SD: 6.0 to the anonymity of the study, the results could not be
months). linked with previous patient data. However, because some

130 Psychopathology 2014;47:127132 Maier/Ernst/Mller/Gross/Zepf/


DOI: 10.1159/000350505 Herpertz-Dahlmann/Hagenah
of the questions were quite private, anonymity may have AN. An important implication for clinical practice is to
been an advantage and perhaps the most convenient way raise professionals awareness of the importance of this
to elicit accurate answers. No information was obtained issue for affected patients and their families. A better un-
about current psychiatric diagnosis, e.g. presence of an derstanding of the relationship between stigmatization
eating disorder. Recall bias may have led to an over- or and the delay or avoidance of therapeutic actions could
underestimation of the amount of perceived stigmatiza- help to reduce treatment barriers. Interventions should
tion. Previous research demonstrated that depressive pa- be developed to provide assistance to both patients and
tients, for instance, recall negative events better than pos- their families. The results of this survey suggest the need
itive events [29]. Therefore, patients psychopathology at for further research in this particular area.
the time of the study may have biased the present results.
Additional limitations of this study are related to the
QSAN, which has not yet been validated. However, the Acknowledgements
QSAN was conceptualized and developed for this pilot
The study received funding by the Medical Faculty of the
study to gain preliminary knowledge of the stigmatization
RWTH Aachen University (START research program). We thank
experiences of young women with AN on a descriptive the participants of this survey. We also thank B. Delheid, M.-L.
level. Nevertheless, some questions may not differentiate Cox-Hammersen, A. Dongauser, C. Parisi, and J. Senderek for
between the consequences of stigmatization and those of their assistance with this project.
an eating disorder. The number of participants in this
analysis is low compared to that in recent studies on stig-
matization among people with other mental disorders, Disclosure Statement
such as affective disorders and schizophrenia [30, 31].
In the past 5 years, F.D.Z. was the recipient of an unrestricted
However, the prevalence rate of AN is relatively low in award donated by the American Psychiatric Association, the
comparison to affective disorders, and this pilot study was American Psychiatric Institute for Research and Education, and
restricted to only one department. Young people with AN AstraZeneca (Young Minds in Psychiatry Award). He also re-
might be particularly reluctant to accept the diagnosis of ceived research support from the German Federal Ministry for
AN and consider its consequences. In addition, dropout Economics and Technology, the German Society for Social Pedi-
atrics and Adolescent Medicine, the Paul and Ursula Klein Foun-
rates are very high in treatment and follow-up studies of dation, the Dr. August Scheidel Foundation, and the IZKF of
patients with AN [32, 33], which was also found in the cur- RWTH Aachen University and a travel stipend from the GlaxoS-
rent investigation. Regarding the rather extensive QSAN mithKline Foundation. He was the recipient of an unrestricted ed-
questionnaire, the response rate of nearly 50% (which is ucational grant, travel support and speaker honoraria from Shire
only slightly lower than that in comparable studies [21, Pharmaceuticals, Germany. In addition, he received support from
the Raine Foundation for Medical Research (Raine Visiting Pro-
27]) seems somewhat acceptable. The reasons for nonre- fessorship) and editorial fees from Co Action Publishing, Sweden.
sponse and the direction of possible distortions can only B.H.D. received research support from Vifor Pharma and was a
be assumed. Subjects with fewer problems with stigmati- member of an advisory board for atomoxetine by Lilly. The other
zation may have been less motivated to complete the ques- authors have no conflicts to disclose or report concerning this area
tionnaire, resulting in the overestimation of stigmatiza- of research.
tion. Not all participants answered all questions. In par-
ticular, some questions on discrimination experiences had
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132 Psychopathology 2014;47:127132 Maier/Ernst/Mller/Gross/Zepf/


DOI: 10.1159/000350505 Herpertz-Dahlmann/Hagenah
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