FEATURE

Help-Seeking Behaviors of Women with Urinary

Incontinence: An Integrative Literature Review
Laura Hunter Koch, BSN, RN
Urinary incontinence (UI) affects approximately 17 million American women. Women with UI have reported
a lower quality of life than women who do not experience UI. In many cases, UI affects a woman’s ability
to take part in a variety of recreational and social activities, and has negative psychological effects including
depression, anxiety, and frustration. Studies show that fewer than 50% of women with UI discuss their
symptoms with their health care provider. Although researchers have examined help-seeking behaviors in
people with UI, few have examined women of all ages with all types of UI. The purpose of this integrative
literature review is to summarize the help-seeking behaviors for UI symptoms among noninstitutionalized
women of all ages with all types of UI. Five studies were reviewed. In all of the studies, less than 38% of
women sought help for their UI symptoms. Factors affecting help seeking included quality of life scores,
perceptions women had regarding the normalcy of UI, and beliefs about treatment options available for the
problem. Age, type of UI, severity of UI, and embarrassment were found to be significantly related to
help-seeking in most, but not all of the studies. J Midwifery Womens Health 2006;51:e39 – e44 © 2006 by
the American College of Nurse-Midwives.
keywords: help seeking, help-seeking behaviors, urinary incontinence

Urinary incontinence (UI) affects approximately 17 mil-
lion American women.1 Although the majority of women
with UI are elderly, approximately 12% to 50% of
healthy middle-aged women experience symptoms of
UI.1 Women with UI have reported a lower quality of life
than women without UI.2,3 In many cases, UI affects a
woman’s ability to take part in recreational or sporting
activities, exercise, shopping, travel, and sexual activi-
ties.4 The negative psychological effects of UI include
depression, anxiety, irritability, worry, frustration, and
tension.4
Beyond the psychological and social problems, UI can
compromise a woman’s physical health, especially if she
is frail, elderly, or has other comorbid conditions.5 UI
often causes women to rush to the bathroom, which
contributes to the risk of falls and hip fractures.5 Women
with UI also have an increased number of urinary tract
infections and episodes of asymptomatic bacteriuria.5
UI is also costly. The annual economic cost of UI is
estimated to be between $16 and $26 billion.1 Approxi-
mately 37% of that money is spent on absorbent products
and laundry, with only 4% of funds being used for the
evaluation and management of UI.1
Less than 50% of women with UI discuss their
symptoms with their health care provider.6 Furthermore,
not all health care providers routinely assess or screen for
this condition unless the patient directly asks for help
regarding their symptoms.6 – 8 Most of the research on UI
Address correspondence to Laura Hunter Koch, BSN, RN, 1794 S. Klinger
Road, Pecatonica, IL 61063. E-mail: lkoch3@uic.edu
and help-seeking behaviors has studied elderly women or
elderly men and women. Research that has evaluated
help-seeking behaviors in younger women has focused
on stress UI.6
The purpose of this integrative literature review is to
summarize the findings of five research studies that
examined the help-seeking behaviors of noninstitution-
alized women of all ages with all types of urinary
incontinence.
METHODS
The research design used in this paper was an integra-
tive literature review. Ganong’s six-step methodology
provided a framework for data collection, analysis,
and synthesis. The steps in this integrative review
process are as follows: 1) selecting review questions
and formulating a purpose; 2) the literature search; 3)
reviewing the characteristics and the findings of the
sample; 4) analyzing the findings; 5) interpreting
results; and 6) reporting the review.9 The goals of an
integrative literature review are to analyze the results
from individual studies using rigorous processes to
ensure thorough, systematic, accurate, and objective
reviews to develop conclusions regarding all of the
current information on the topic.9 This is different than
a meta-analysis, the purpose of which is to use
statistical techniques to examine past research and
estimate the effect of interventions or relationships
among related or identical hypotheses, or a systematic
review, which is used to summarize the evidence
regarding a specific clinical problem.10

Journal of Midwifery & Women’s Health • www.jmwh.org e39

© 2006 by the American College of Nurse-Midwives 1526-9523/06/$32.00 • doi:10.1016/j.jmwh.2006.06.004
Issued by Elsevier Inc.
 The variables of interest for this literature review are
help-seeking behaviors and urinary incontinence; UI is
defined as any complaint of involuntary leakage of
urine.11 Involuntary leakage of urine accompanied by or
immediately preceded by urgency is termed urge urinary
incontinence.11 Involuntary leakage on effort or exertion,
or on sneezing or coughing is called stress urinary
incontinence.11 Mixed urinary incontinence is defined as
the complaint of involuntary leakage of urine associated
with urgency and also with exertion, effort, sneezing, or
coughing.11 Help-seeking behaviors are defined as hav-
ing sought medical help from a health care provider.12
Research and studies for this integrative literature
review were identified by performing computerized lit-
erature searches of MEDLINE, CINAHL, PubMed,
OVID, and Google databases using combinations of the
following keywords: urinary incontinence, help-seeking
behaviors, help seeking, treatment-seeking behaviors,
and treatment seeking. Ancestry searches of the reference
lists of published studies and related articles were also
used to identify samples for this review. The criteria for
inclusion of a research study included: women of any age
with any type of UI, studies that specifically examined
help-seeking behaviors of women with UI, women who
were noninstitutionalized, the study was written in En-
glish, and the study was published after 1996. This date
was chosen because in 1996, the Agency for Health Care
Policy and Research (AHCPR) published clinical prac-
tice guidelines for all practitioners describing ways to
assess and treat UI. Any research studies performed
before this will not take into account any increase in
information regarding UI that may have occurred follow-
ing the introduction of the guidelines, and would not be
currently applicable. Age was not restricted in this study,
as there is little research examining help-seeking behav-
iors in both younger and older women with UI. Exclusion
criteria included articles with male participants, articles
that mentioned help seeking but did not specifically
examine it, and literature reviews. Once studies were
identified as appropriate for review, information from
each was gathered and transcribed onto a data-coding
sheet, which included categories of information to be
analyzed for each study, including author, study purpose,
sample, research design, instruments, and results.
RESULTS
Description of Studies
One hundred and twenty-six articles were obtained. One
hundred and two articles were immediately eliminated
Laura Hunter Koch, RN, BSN, is a master’s student in the Women’s Health
Nurse Practitioner program at the University of Illinois at Chicago, and
works as a Labor and Delivery nurse at Freeport Memorial Hospital in
Freeport, IL.
e40
because they did not review help-seeking behaviors of
women with UI. The remaining 24 articles were obtained
and read. Fifteen mentioned but did not specifically
examine help-seeking behaviors, seven included men,
and two were reviews. After applying the inclusion and
exclusion criteria, five articles remained for this review
(Table 1).2– 4,6,12
In addition to examining help-seeking behaviors, four
of the studies examined quality of life in relation to
UI,2,3,6,12 and one examined the amount of education
women had been given regarding stress UI.4
All of the studies were retrospective.2– 4,6,12 Three of
the studies were quantitative and used fixed choice
questionnaires to measure help-seeking behaviors and
UI.2,3,6 One study was qualitative using semistructured
interviews,4 and one study had both qualitative and
quantitative components where interviewers collected
data using fixed choice questionnaires.12
Researchers developed their own questionnaires to
examine help-seeking behaviors in all five studies.2– 4,6,12
However, established questionnaires were also used in all
of the studies to determine if a woman suffered from UI,
and the type of UI she experienced.2– 4,6,12 Additionally,
each of the studies used similar established question-
naires to measure quality of life related to UI.2– 4,6,12
Four of the studies used the subjective determinations of
respondents to evaluate for UI,3,4,6,12 and one study
required respondents to have a confirmed diagnosis of
stress UI by either a urologist or gyneco-urologist.2
Three of the studies examined women with all types of
UI,3,6,12 and two examined women with stress UI only.2,4
Three of the studies included women of all ages,3,6,12 and
one included women aged 65 and younger.2 One study
included only women who had delivered a child within
the past few years, which effectively limited the study to
women under the age of 65.4
Samples for the studies included women between the
ages of 17 and 93, and the sample size ranged from 57 to
1970. Four of the studies recruited subjects randomly
from large cross-sectional databases,3,4,6,12 and one from
urology or gyneco-urology clinics.2 One study was con-
ducted in the United States,6 one in Sweden,3 one in
Israel,2 one in England,4 and one in Taiwan.12
All of the studies surveyed women with UI as their
sample population, but not all of the studies presented
data that included both the reasons women gave for
seeking or for not seeking help for their UI symptoms.
Four studies presented data from women who had sought
help for their UI symptoms,2,4,6,12 and one presented data
from women who had not sought help.4 One study
presented data from women who had delayed seeking
help for up to 3 years,2 and two studies made compari-
sons between women who had sought help for their UI
symptoms with women who had not sought help.3,6
Volume 51, No. 6, November/December 2006
 Table 1. Summary of the Population-Based Surveys Examining Help-Seeking Behaviors of Women with UI
Author Sample Design Help-Seeking Behavior Results
Hagglund et al. 3
N ⫽ 1107; women aged Retrospective: Case control assessment of QOL in Women who sought help were older, more
18–72 women with urge vs. stress UI and in women likely to have urge UI and had lower
who consulted a health care provider vs. those quality of life scores
who did not seek help.
Kinchen et al.6 N ⫽ 1970; women aged Descriptive design: Two-stage cross-sectional Women who sought treatment had severe UI
19–93 study to characterize incontinent women of all symptoms, were more likely to speak to
ages who are seeking treatment and compare their physician about other conditions,
them with women who are not seeking more likely to schedule routine visits to
treatment. see their health care provider, were not
embarrassed to speak to their health
care provider or other people about UI,
and did not believe that UI was a
natural part of getting older
Margalith et al.2 N ⫽ 131; women aged Retrospective: Quantitative design to explore the Women who had sought help reported
22–65 QOL, psychological stress, and patterns of higher levels of problems with sexual
seeking health care among women under the functioning and stress related to
age of 65 with urinary stress incontinence. incontinence, and higher levels of
reported suffering compared to women
without UI
Mason et al.4 N ⫽ 57; women aged Retrospective: Qualitative design to determine Women who did not seek help did not think
17–45 whether women who experience stress their UI was a big enough problem, or
incontinence following childbirth are provided they were embarrassed discussing it with
with information on the condition, whether their health care provider
they seek help, why they might not seek help,
and what help they receive.
Yu et al.12 N ⫽ 205; women aged Retrospective: Descriptive design to investigate Women who sought help were more likely to
20–90 the QOL impact of UI and examine its report that their QOL or health was
relationship with treatment seeking in adult affected, and perceived UI to be a
Taiwanese women. disease
QOL ⫽ Quality of life; UI ⫽ urinary incontinence.

Help-Seeking Behaviors reported among the three studies that evaluated help-
seeking behaviors in women with all types of UI.
Few women sought help for their UI symptoms in all of
Hagglund et al.3 reported that women with urge UI were
the research studies. Hagglund et al.3 reported that 14%
significantly more likely to seek help for their UI
of women with UI had sought help, Kinchen et al.6
symptoms than women with stress UI. Conversely, both
reported that 38% of women sought help, and Yu et al.12
Kinchen et al.6 and Yu et al.12 found no significant
reported that 27% of women with UI sought help for their
relationship between the types of UI symptoms and help
symptoms. Margalith et al.2 examined a cohort of women
seeking.
who had delayed seeking help for their stress UI symp-
Four of the studies evaluated relationships between the
toms. They reported that 74% of women with stress UI
self-reported severity of UI and help-seeking behav-
waited for at least a year before seeking help for their
iors.2,4,6,12 Both Kinchen et al.6 and Margalith et al.2
symptoms, and 46% waited for up to 3 years before
found that women with severe UI symptoms were sig-
seeking help. Mason et al.4 performed a qualitative study
nificantly more likely to seek help. In contrast, Mason et
in which they examined reasons why women with stress
al.4 found that symptom severity did not explain help
UI did not seek help for their symptoms at 8 weeks and
seeking, as women with both “occasional” and “daily”
1 year postpartum. Only 16% of the study participants
symptoms sought help, and women with “severe” symp-
sought help for their symptoms at 8 weeks, and 25%
toms did not. Similarly, Yu et al.12 found no difference in
sought help for their symptoms at 1 year postpartum.
help-seeking behaviors based on severity of symptoms.
Three of the studies examined the association between
Factors Associated With Help Seeking
age and help-seeking behaviors in women with UI.3,6,12
A number of factors were examined to determine if they The results were varied. Hagglund et al.3 and Kinchen et
were associated with help seeking for UI. These factors al.6 found that older women were significantly more
included type of UI, severity of UI, and age. likely to seek help than younger women, whereas Yu et
All five studies examined help-seeking behaviors in al.12 found no significant differences in help-seeking
relation to types of UI.2– 4,6,12 Varying results were behaviors of women based on age.

Journal of Midwifery & Women’s Health • www.jmwh.org e41

 Four studies examined help-seeking behaviors of
women with UI in relation to demographics, such as
education level, income, and marital status.2,3,6,12 These
demographic factors were found to have no significant
effect on help-seeking behaviors in all of the studies that
examined them.2,3,6,12
In addition to physical variables such as type and
severity of UI, psychological and psychosocial variables
were also examined in some studies. These variables
included quality of life, beliefs, perceptions, and emo-
tions.
The relationship between quality of life scores and
help-seeking behaviors was examined in four of the
studies.2,3,6,12 Of those, three evaluated the relationship
between the total quality of life score and help-seeking
behaviors,2,6,12 and one evaluated the relationship be-
tween quality of life measures and help-seeking behav-
ior.3 All four studies that examined quality of life factors
and help seeking reported that women with low quality
of life scores were significantly more likely to seek help
for their UI symptoms.2,3,6,12 Hagglund et al.3 found that
women who had sought help for their UI symptoms were
significantly more likely to have low scores on the
quality of life questionnaire in seven out of eight areas;
and the only area not significantly related was “emotions
that affect normal daily activities.”
Beliefs, perceptions, and emotions are a major com-
ponent in help seeking. Four studies used questionnaires
to examine how specific beliefs, perceptions, and emo-
tions affected the help-seeking behaviors of women with
UI,2,3,6,12 and one asked open ended questions concern-
ing women’s beliefs, perceptions, and emotions regard-
ing UI and help seeking.4 Mason et al.4 reported that 46%
of women did not seek help for their UI symptoms
because they were embarrassed, and Margalith et al.2
reported that 15% of women reported being too ashamed
to seek help for the problem. Similarly, Kinchen et al.6
reported that women who were embarrassed discussing
UI were significantly less likely to seek help. In contrast,
Yu et al.12 reported that being embarrassed about UI was
not significantly related to help seeking.
Both Margalith et al.2 and Kinchen et al.6 reported that
the belief that UI was perceived as a normal part of aging
was related to not seeking help. Margalith et al.2 reported
that 9% of women delayed seeking help because they
thought most women their age had the same problem.
Kinchen et al.6 reported that women who agreed with the
statement “UI is a natural part of getting older” were
significantly less likely to seek help than women who did
not agree with the statement.
Additionally, these studies evaluated how perceptions
regarding treatment options for UI and the perception of
UI as a disease affected help seeking. Margalith et al.2
found that 14% of women did not seek help for their UI
symptoms because they were afraid the physician would
recommend surgery, and 8% of women did not think the
e42
problem could be solved. Similarly, Kinchen et al.6
reported that women who did not seek treatment were
significantly more likely to view surgery as having no or
limited acceptability as a treatment option. Mason et al.4
reported that 8% of women at 8 weeks postpartum had
not sought help because they knew that pelvic floor
exercises could help their problem. Yu et al.12 found that
women who perceived UI as a disease were significantly
more likely to seek help than women who did not
perceive UI as a disease.
Other beliefs about the normality of UI affected
help-seeking behavior. Mason et al.4 found that 5% of
women at 8 weeks postpartum had not sought help
because it had not occurred to them. The same study
reported that at 1 year postpartum, 33% of women had
not sought help because they felt their general practitio-
ner would not think UI was a serious problem, and 67%
of women did not believe that their UI was a big enough
problem. Conversely, Kinchen et al.6 reported that of the
women who did seek help, 68.4% had done so because
they were concerned the condition would get worse, and
Yu et al.12 reported that 83% of women sought help
because their health was affected.
In addition to perceptions and beliefs, attitudes regard-
ing health care and public media were evaluated in two of
the studies.6,12 Yu et al.12 reported that 16% of women
who sought help had done so because of advice from the
public media. Kinchen et al.6 compared the attitudes of
women with UI who sought treatment toward health care
use to the attitudes of women with UI who had not sought
treatment. Women who sought treatment had signifi-
cantly different attitudes regarding health care than
women who did not. Women who sought treatment were
significantly more likely to ask a physician about another
condition during a scheduled appointment, seek out
medical information, not be embarrassed discussing UI
with a doctor, schedule visits for routine physicals and
preventive care, and were less likely to put off going to
the doctor.
DISCUSSION
In all of the studies reviewed, less than 38% of women
with UI sought help for their condition, and in one study,
74% of women who did seek help waited for more than
a year to do so. These results verify that numerous
women with UI remain untreated. In the studies re-
viewed, factors such as quality of life scores, the effects
of UI on women’s health, the belief that UI is a normal
result of aging, and perceptions regarding surgery as a
treatment for UI were found to affect help seeking.
Factors such as age, embarrassment, type of UI, and
severity of UI were found to be significantly related to
help seeking in most, but not all of the studies.
Unfortunately, the help-seeking behaviors of women
of all ages with all types of UI have not been studied
Volume 51, No. 6, November/December 2006
extensively. Only five studies were found that examined
help-seeking behaviors of women with UI symptoms,
and the existing studies are limited by many factors. Only
one of the studies reviewed was performed in the United
States. Differences in health care systems, cultural dif-
ferences regarding women, and religious beliefs could
have caused the variations in results.
Only three of the studies examined women of all ages
and only three of the studies examined women with all
types of UI. The majority of the studies’ focus was on
quality of life and UI, with only a few extensively
evaluating help-seeking behaviors. As the majority of the
studies employed questionnaires as a measurement in-
strument, there was little opportunity for respondents to
explain in their own words why they would or would not
seek help for their UI symptoms. The one study that did
employ this technique evaluated only one type of UI,
with a small sample of postpartum women.
While many providers feel that they are adequately
evaluating patients for UI symptoms, research indicates
that this is not the case.6 – 8,13 Some of the reasons
providers may not assess for this condition is their lack of
understanding regarding the problem, lack of training
concerning treatment for the condition, or a reflection of
their lack of interest in topics that concern women’s
health.14 It is clear from the research that few women
will attempt to seek help for this condition on their own,
and for this reason, it is important that health care
providers assess for this condition and understand the
best methods of treatment for this problem.
The National Guideline Clearinghouse (NGC) of the
Agency for Health Care Policy and Research has evi-
denced-based guidelines for providers regarding assess-
ment of UI, which rates each assessment or intervention
on their level of evidence.15 The assessment strategies
that received the highest ratings include adopting a
proactive approach in consultations with patients who are
at the greatest risk for developing UI, recognizing the
difficulty that some patients have in raising concerns
about incontinence, being proactive in questioning pa-
tients about incontinence during visits, and offering the
patient with UI a validated quality of life and inconti-
nence severity questionnaire to evaluate the impact of UI
symptoms and to assess the effectiveness of any man-
agement strategies being utilized.15 Providers should be
aware of the risk factors for UI, including age, meno-
pause, pregnancy and childbirth, high body mass index
(BMI), and continence problems during childhood.15
Recommended treatments that are most efficacious
(based on at least one meta-analysis, systematic review,
or a body of evidence with consistent results) include
pelvic floor muscle exercises and pharmacotherapy. Pel-
vic floor muscle exercises should be the first choice for
treatment of patients with stress or mixed UI. The
specific program should be individualized to make it
achievable for each patient. Duloxetine hydrochloride
Journal of Midwifery & Women’s Health • www.jmwh.org
(Cymbalta; Eli Lilly and Co., Indianapolis, IN) should
only be used to treat stress UI as part of an overall
management strategy in addition to pelvic floor muscle
exercises, and not on its own. A 4-week trial of dulox-
etine hydrochloride is recommended for women with
moderate to severe stress incontinence, and women
started on this should be evaluated after 12 weeks of
therapy to assess for progress and to decide whether to
continue with this treatment.15
A trial of one of the anticholinergic agents, such as
oxybutynin (Ditropan; Ortho-McNeil Pharmaceutical,
Raritan, NJ), propiverine (Detrunorm; Schering-Plough,
Palo Alto, CA), tolterodine (Detrol LA; Pfizer, Inc, New
York, NY), or trospium (Sanctura; Esprit Pharma, East
Brunswick, NJ) should be offered to patients with sig-
nificant urgency with urination, whether or not they have
urge UI. The dose should be titrated to avoid the adverse
effects of the drug.15
Although UI is a treatable condition, millions of
women continue to suffer psychologically, socially, and
physically from this problem. Unfortunately, there con-
tinues to be widely held misunderstandings concerning
this condition, and women continue to go untreated.
Health care providers need to be aware of the low rates
of women seeking help for this problem, and the need for
further education in this area. In addition, further re-
search is required to fully understand the help-seeking
behaviors of women with UI. With this knowledge,
health care providers may be better able to implement
interventions that will increase the likelihood that women
will seek help for their UI symptoms.
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Volume 51, No. 6, November/December 2006