Content uploaded by Wolfgang Umek
Author content
All content in this area was uploaded by Wolfgang Umek on Nov 13, 2016
Content may be subject to copyright.
original article
e greatest taboo: urinary incontinence as a source of shame and embarrassmentwkw 19–20/2011 © Springer-Verlag 607
Wien Klin Wochenschr (2011) 123: 607–610
DOI 10.1007/s00508-011-0013-0
© Springer-Verlag 2011
Printed in Austria
Wiener klinische Wochenschrift
The Central European Journal of Medicine
The greatest taboo: urinary incontinence as a source
of shame and embarrassment
Ksenia Elenskaia1, Karin Haidvogel2, Christine Heidinger3, Daniela Doerfl er1, Wolfgang Umek1, Engelbert Hanzal1
1
Department of Obstetrics and Gynecology, Division of Gynecology and Gynecologic Oncology, Medical University
of Vienna, Vienna, Austria
2Department of Obstetrics and Gynecology, Landeskrankenhaus Steyr, Steyr, Austria
3Schuhfried GmbH, Mödling, Austria
Received December 29, 2010, accepted after revision May 31, 2011, published online September 22, 2011
Tabuthema Harninkontinenz
Zusammenfassung. Hintergrund: Während in der Fach-
literatur und Medien die Harninkontinenz häu g als ein
„Tabu“ bezeichnet wird, gibt es keine wissenschaftlichen
Daten, die diese gängige Meinung bestätigen. Das Ziel un-
serer Studie war die Wahrnehmung der Harninkontinenz
als Tabu zu messen und diese mit anderen Krankheitsbil-
dern, die als beschämend empfunden werden können, zu
vergleichen.
Methoden: Insgesamt 150 Personen unterschiedlichen
Alters und Bildungsgrades füllten einen anonymen 13-tei-
ligen Fragebogen über die Wahrnehmung und Kenntnisse
der Harninkontinenz aus. Bei der Datenauswertung wur-
den U-Test, Chi-square-Test mit Yates-Korrektur, Fischers
exakt Wert, Kolmogorov-Smirnov-Test verwendet.
Ergebnisse: Sechsundachtzig (60,6 %) von 142 Befragten
dachten, dass Harninkontinenz in Österreich ein Ta-
buthema ist. Die Gesamtbevölkerung hat Harninkonti-
nenz signi kant peinlicher empfunden als eine Depression
oder Krebserkrankung (p = 0,001).
Schlussfolgerung: Trotz der hohen Prävalenz, ist das
ema Harninkontinenz immer noch ein Tabu in bis zu
60% österreichischen Probanden. Insgesamt wird Harnin-
kontinenz deutlich beschämender empfunden als Depres-
sion oder Krebs. Die Österreicher könnten mehr über
dieses Gesundheitsproblem aufgeklärt werden.
Summary. Introduction: While urinary incontinence is of-
ten labeled as a taboo in the literature, we found no scien-
ti c data addressing this issue exclusively. e aim of our
study was to measure the perception of urinary inconti-
nence as a taboo and how this compares to other medical
conditions that may be embarrassing.
Methods: 150 test persons completed a self-administe-
red 13-item questionnaire about perception and know-
ledge of urinary incontinence. Data were analysed with
the SPSS 10.0.5 software package using the U-test, Chi-
square-test, Yates-correction, Fisher’s exact test and Kol-
mogorov-Smirnov test.
Results: Eighty-six (60.6%) of 142 respondents thought
that urinary incontinence constituted a taboo in Austria.
To be incontinent was considered signi cantly more em-
barrassing than depression or cancer, respectively
(p = 0.001).
Conclusion: Despite its high prevalence, urinary incon-
tinence is still considered a taboo in up to 60% of our Au-
strian test persons. e level of shame and embarrassment
of urinary incontinence is signi cantly higher than that of
depression and cancer.
Key words: Cancer, depression, taboo, urinary inconti-
nence.
Introduction
Urinary incontinence (UI) is a worldwide problem, a ec-
ting women of all ages and across di erent cultures and ra-
ces [1]. While physical health does not necessarily have to
be impaired much, it is generally acknowledged that in-
continence leads to isolation and a signi cant reduction in
the quality of life through a restriction of social activities.
Despite its prevalence, consultation and treatment rates of
UI are reported to be quite low [2]. While on the one hand
this may be explained by the benign nature of the a iction
and by a low impact on quality of life in mild cases, it may
well be that on the other hand a feeling of shame and dise-
steem in incontinent people leads to the development of a
taboo-subject that cannot adequately be discussed with
relatives, friends or health care providers. e perception
of incontinence as a taboo has therefore often been blamed
as one of the possible reasons for not seeking adequate
Correspondence: Ksenia Elenskaia, MD, Department of Obstetrics
and Gynecology, Division of Gynecology and Gynecologic
Oncology, Medical University of Vienna, Vienna, Austria,
E-mail: ksenia.elenskaia@meduniwien.ac.at
original article
e greatest taboo: urinary incontinence as a source of shame and embarrassment © Springer-Verlag 19–20/2011 wkw608
medical help for UI, but there are also opinions to the con-
trary [3–5].
Is incontinence a taboo issue in modern societies? A re-
cent search on pubmed.com revealed 149 citations for the
search-phrase “(taboo OR shame* OR neglect*) AND in-
continence”, however, only 4 papers were listed under the
“clinical trials” tab, 3 concerned with fecal incontinence
and one qualitative study on UI only marginally touching
the taboo issue [6–9]. Despite frequent claims in reviews
and the lay media, to our knowledge no study exists addres-
sing the issue of UI as a social taboo exclusively. We there-
fore performed a cross-sectional survey as part of a thesis
at the Medical University of Vienna, Austria on a conveni-
ence sample of study subjects to see how many of them
perceived UI as a taboo and to nd out to what degree
other medical conditions like depression and cancer were
seen as such.
Material and methods
We developed a 13-question self-administered questionnaire and
two authors (KH, EH) tested face validity. e anonymous ques-
tionnaire contained simple questions on gender, age and educa-
tional level. A question “What is urinary incontinence?” with a
single right and three obviously wrong answers (“infection of the
bladder”, “uric acid in the blood” and “smelly urine”) was posed.
We then asked yes/no questions on whether test persons believed
that UI is a taboo issue in the society, whether the respondent
knew someone with UI, how he or she would suspect others of
being incontinent, whether the respondent would address this is-
sue with the suspected person and whether the test person would
tell anyone if personally a ected by UI. e term “taboo” is in
common use in the German language, meaning a strong social
ban or prohibition [10] and we felt that it normally poses no un-
derstanding problems. We then asked the study subjects to grade
the amount of embarrassment and that of anxiety on two Likert
scales from 0–10, if they themselves were incontinent, or a icted
by depression or cancer. For frequency analysis those results were
divided into absent (0–2), mild (3–4), moderate (5–6), severe (7–8)
and extreme (9–10). We also asked a few simple yes/now ques-
tions on knowledge about UI: if e ective therapy exists, if men
can also be a ected with UI and if the women of all ages can be
a ected.
We approached a convenience sample of 160 test persons
from diverse waiting areas of outpatient departments of a teach-
ing hospital to take part in the study. We included subjects older
than 18 years willing to take part in the study mentally capable to
understand and ll in the anonymous questionnaire. We ex-
cluded subjects who declined participation, those delivering in-
complete questionnaires and participants with inappropriate an-
swers to the question “what is urinary incontinence?”, because we
felt that these would not understand the concept of the survey.
We analyzed the di erences in perception of UI between sexes,
age groups (< 20, 20–29, 30–39, 40–49, 50–59, 60–69, 70–79, 80–89,
90+) and educational levels (primary-, secondary- and high
school education).
Data were analyzed with the SPSS 10.0.5 (SPSS Inc., Chicago,
IL) software package using the U-test, Chi-square-test, Yates-cor-
rection, Fisher’s exact test and Kolmogorov-Smirnov normality
test where appropriate.
e study was approved by the Ethical Committee of the Med-
ical University of Vienna, Austria and registered at ClinicalTrials.
org (NCT00939432).
Results
We approached 160 persons to take part in the study. Ten
(6.2%) declined and 150 (93.8%) completed the question-
naire. Eight (5.3%) participants were excluded for ticking
inappropriate answers to the question “what is urinary in-
continence?” leaving 142 for analysis. ere were 96
(67.6%) female and 46 (32.4%) male test persons answe-
ring the questionnaire. Mean age was 43 (range 18–100)
years; the Kolmogorov-Smirnov normality test revealed
overrepresentation of younger age groups. Seventy-nine
(55.6%), 52 (36.6%) and 11 (7.7%) claimed to have comple-
ted the primary, secondary and high school level, respec-
tively.
Eighty-six (60.6%) of respondents ticked the “yes” box
under „do you think that urinary incontinence is a taboo
issue in the society?“. ere was no statistically signi cant
di erence between age groups (p = 0.111), sex (p = 0.895)
and educational level groups (p = 0.905). To be incontinent
was considered to be severely embarrassing and more so
than depression or cancer as measured on the 0-10 Likert
scale (p < 0.001) (Fig. 1). ere was a signi cantly negative
correlation of age and level of embarrassment (Spearman
–0.269; p = 0.001), with a maximum of embarrassment in
age the group 20–29 years. We found no di erences bet-
ween sex (p = 0.195) and educational level groups
(p = 0.096). Conversely, cancer was more often associated
with anxiety (extremely) and signi cantly more than UI or
depression (p < 0.001) and this answer showed no age, sex
or educational level di erences (Fig. 2).
Signi cantly more female than male respondents per-
sonally knew incontinent persons (57 [50.7%] and 18
Fig. 1. “How embarrassed would you be when affl icted with one of
the following conditions?” Median scores on a 0 (not embarrassed)
to 10 (maximally embarrassed) Likert-scale. Bars denote 25–75th
interpercentile ranges
Fig. 2. “How alarmed would you be when affl icted with one of the
following conditions?” Median scores on a 0 (not alarmed) to 10
(maximally alarmed) Likert-scale. Bars denote 25–75th interpercentile
ranges
original article
e greatest taboo: urinary incontinence as a source of shame and embarrassmentwkw 19–20/2011 © Springer-Verlag 609
[24.3%], respectively; p = 0.031). ere was also a signi-
cant age di erence (p = 0.024) suggesting that more of the
older respondents knew someone with UI. We found no si-
gni cant di erences in educational level among respon-
dents by answering this question. Of the 75 respondents
who knew someone with UI personally, 40 (53.3%) repor-
ted that the a ected persons had volunteered this infor-
mation, whereas in 35 (46.7%) they had heard it from third
persons or were suspecting the condition. Eleven (14.7%)
of 75 respondents knowing someone with UI had asked
the a ected person directly. Women learned directly about
UI from the a ected person signi cantly more often than
men (35 [61.4%] and 5 [27.8%], respectively; p = 0.026).
ere were no signi cant di erences in age or educational
level groups. 104 (73.2%) respondents believed that they
themselves would con de their UI to someone else if they
were a icted. ere was a signi cant age di erence by
answering this question showing greater readiness among
senior people to be open about UI. ere were no signi-
cant di erences between sex (p = 0.63) and educational
level (p = 0.165) groups. 93 (65.5%) were ready to tell their
partner if they would su er from UI with no signi cant dif-
ference in age-, sex and educational level group.
Discussion
is survey showed that more than half of the respondents
believed that UI is a taboo in Austria (60.6%). Men and wo-
men irrespective of age and educational level shared this
opinion. Moreover, most of our respondents found it more
embarrassing to be a ected by UI compared to depression
or cancer. ere appeared to be also some gender-speci c
di erences. Roughly half of the female and only 24% of the
male respondents personally knew someone with UI.
erefore perception of UI as a taboo is likely to be ubi-
quitous in all human populations and not characteristic
just in Austria and Europe. Indeed many international stu-
dies have been facing di culties in studying UI because of
underreporting due to its being o -limits, often citing the
taboo-status of the condition as an important factor [2,
11,12]. Many studies have shown that consultation and
treatment rates of UI are quite low, despite its high preva-
lence [2–5]. A review of 15 studies estimated that the over-
whelming majority of patients with UI did not seek medical
help for their condition [1, 13]. Temml et al. showed that
only 5.1% of incontinent women and 16.1% of incontinent
men were seeking medical help for this condition [14]. Si-
milarly low percentages were found in other studies
[15,16]. e reason for the discrepancy between the avai-
lability of adequate treatment and the low percentage of
people seeking help probably lies in the lack of knowledge
about UI which are still widespread, as shown in our
study.
It is not self-explanatory how incontinence might get its
taboo status and we found no plausible theories on the
subject. e term “taboo” has obviously been introduced
into the English language (and later into others) by the late
18th century, when expeditions to the South Sea, led by Ja-
mes Cook revealed that the word „tapu“, characterizing a
strong social ban or prohibition in the Tongan language
had no adequate counterpart in the English language [10].
e Neolithic Revolution some 10,000 years ago brought
about the transition from hunter-gatherer societies depen-
ding on mobility, to agriculture and eventually settlement
of an increasing number of tribes in villages and towns.
is led to ever-increasing demands on domestic hygiene
in permanent homes and must have brought about the
growing need of excrement disposal. In the wake of these
new necessities, deferring one’s urge to urinate or defecate
must have become not only a survival bene t but also a
more valuable and sociable capability. Likewise, a failure
to maintain continence may quickly have reached the sta-
tus of a taboo issue.
Our study has several limitations. A convenience sample
of 150 participants from waiting areas in a teaching hospi-
tal may have introduced selection bias and indeed there
was evidence of oversampling of younger age groups and
female test persons, thus the results have to be interpreted
cautiously and cannot be extrapolated easily to the gene-
ral population. Unfortunately, limited nancial resources
for this study rendered a population-based approach un-
realistic. But we felt that a social ban to reach the level of a
taboo issue would have to be relevant to the great majority
of a population and is likely to be detected through all so-
cial groups, suggesting that we may indeed have a fairly ac-
curate estimate at least of the taboo-perception, which was
our primary study objective. Perhaps the biggest de cit of
our study is that questionnaire was not formally validated,
except for face validity. However, we used simple questi-
ons and a wording as clear and concise as possible to pro-
duce a clearly laid-out 13-item questionnaire, thus
minimizing the risk of poor reliability. In addition the lack
of other validated measures with which to compare points
the poverty of our knowledge in this topic and the neces-
sity of further research.
Unfortunately, taboo does not apply to patients only.
Studies keep reporting that symptoms of urinary bladder
dysfunction often remain underdiagnosed, because doc-
tors do not ask about the condition [17, 18]. Since lack of
knowledge can hardly be blamed for this shortcoming, de-
spite claims of inadequate training in urogynecology by
some, this appears to highlight a possible role for the taboo
of UI even in health care providers [19, 20].
Conclusion
Despite its high prevalence UI is still considered a taboo by
60% of our Austrian test persons. e level of embarrass-
ment of UI is highest amongst the comparators depression
and cancer. ere appears to be a gender speci c di e-
rence in the perception of incontinent persons with wo-
men knowing more people su ering from this condition.
A relatively high number of test persons displayed a poor
knowledge about the treat ability of UI. Despite the pro-
gress in the professional and patient’s awareness about UI
we still do not actively prohibit discussion.
Con ict of interest
e authors declare that there is no con ict of interest.
original article
e greatest taboo: urinary incontinence as a source of shame and embarrassment © Springer-Verlag 19–20/2011 wkw610
References
1. Minassian VA, Drutz HP, Al-Badr A. Urinary incontinence as a
worldwide problem. Int J Gynaecol Obstet 2003;9:82(3):327–
38.
2. Hunskaar S, Lose G, Sykes D, Voss S. e prevalence of uri-
nary incontinence in women in four European countries.
BJU Int 2004;2:93(3):324–30.
3. Andersson G, Johansson JE, Garpenholt O, Nilsson K. Uri-
nary incontinence- prevalence, impact on daily living and
desire for treatment: a population-based study. Scand J Urol
Nephrol 2004;38(2):125–30.
4. Morris K . Tackling the taboo of urinary incontinence. Lancet
1999;1:9;353(9147):128.
5. Teunissen D, van den Bosch W, van Weel C, Lagro-Janssen
T. Scand Urinary incontinence in the elderly: attitudes and
experiences of general practitioners. A focus group study. J
Prim Health Care 2006;3:24(1):56–61.
6. Shoshan L, Ben-Zvi D, Katz-Leurer M. Use of the anal plug in
the treatment of fecal incontinence in patients with menin-
gomyelocele. J Pediatr Nurs 2008;10:23(5):395–9.
7. Van den Muijsenbergh ME, Lagro-Janssen TA. Urinary in-
continence in Moroccan and Turkish women: a qualitative
study on impact and preferences for treatment. Br J Gen
Pract 2006;12:56(533):945–9.
8. Tjandra JJ, Lim JF, Hiscock R, Rajendra P. Injectable sili-
cone biomaterial for fecal incontinence caused by internal
anal sphincter dysfunction is e ective. Dis Colon Rectum
2004;12:47(12):2138–46.
9. Rockwood TH, Church JM, Fleshman JW, Kane RL, Mavran-
tonis C, orson AG, et al. Fecal Incontinence Quality of Life
Scale: quality of life instrument for patients with fecal incon-
tinence. Dis Colon Rectum 2000;1:43(1):9–16.
10. Marshall G. A dictionary of sociology (Oxford Paperback Ref-
erence) Oxford University Press, USA; 2nd Ed. 1998; (12:17.)
11. Li FL, Low LP, Lee DT. Chinese women´s experiences coping
with urinary incontinence. J Clin Nurs 2007;3:16(3):610–2.
12. Kang Y, Crogan NL. Social and cultural construction of uri-
nary incontinence among Korean American elderly women
Geriatr Nurs 2008;29(2):105–11.
13. Stoddart H, Donovan J, Whitley E, Sharp D, Harvey I. Urinary
incontinence in older people in the community: a neglected
problem? Br J Gen Pract 2001;51(468):548–52.
14. Damián J, Martín-Moreno JM, Lobo F, Bonache J, Cerviño
J, Redondo-Márquez, et al. Prevalence of urinary inconti-
nence among Spanish older people living at home. Eur Urol
1998;34(4):333–8.
15. Temml C, Haidinger G, Schmidbauer J, Schatzl G, Mader-
sbacher S. Urinary incontinence in both sexes: prevalence
rates and impact on quality of life and sexual life. Neurourol
Urodyn 2000;19(3):259–71.
16. Cohen SJ, Robinson D, Dugan E. Communication between
older adults and their physicians about urinary inconti-
nence. J Gerontol A Biol Sci Med Sci. 1999;54(1):M34–7.
17. Morris K. Tackling the taboo of urinary incontinence. Lancet
1999;353(9147):128.
18. Harris SS, Link CL, Tennstedt SL, Kusek JW, McKinlay JB.
Care seeking and treatment for urinary incontinence in a
diverse population. J Urol 2007;177(2):680–4.
19. Peschers UM, Tunn R, Dejewski C, Koelbl H. Urogynecologi-
cal training, testing and treatment among gynecologists in
Germany. Eur J Obstet Gynecol Reprod Biol 2008;140(1):118–
23.
20. Wagg A, Potter J, Peel P, Irwin P, Lowe D, Pearson M. Nation-
al audit of continence care for older people: management of
urinary incontinence. Age Ageing 2008;1:37(1):39–44. Epub
2007;11:21.
