Full text of DOI:10.1093/fampra/18.1.48

Family Practice
© Oxford University Press 2001
Vol. 18, No. 1
Printed in Great Britain
Barriers to help seeking in people with urinary
symptoms
C Shaw, R Tansey, C Jackson, C Hyde and R Allan
Shaw C, Tansey R, Jackson C, Hyde C and Allan R. Barriers to help seeking in people with urinary
symptoms. Family Practice 2001; 18: 48–52.
Background. Urinary incontinence is a common problem but, for those experiencing signifi-
cant clinical symptoms, help seeking has been reported to be as low as 20%. As many of these
people could be helped by simple interventions, there is a clear need to identify barriers to help
seeking and develop interventions to overcome these barriers.
Objectives. This study explores help-seeking behaviour in people with urinary symptoms such
as leakage, frequency, nocturia and urgency in order to identify barriers to service use.
Method. Thirty-one people who either had agreed to treatment as part of an intervention study
or who were receiving treatment at a hospital out-patient clinic for their urinary problems took
part in unstructured, taped interviews. Respondents were questioned about their views on help
seeking for urinary problems and their personal experiences of consultations. The data were
transcribed, coded and thematic analysis carried out.
Results. The most common theme to emerge was a lack of knowledge of the condition and of
available treatments. Urinary symptoms frequently were considered a normal part of ageing or
childbirth, or it was felt that these types of symptoms were inappropriate for medical inter-
vention. Older people were not only more likely to accept symptoms but were also less likely
to want to bother their GP. Patients did not always communicate their concerns about urinary
symptoms to their GP, through either embarrassment or misconceptions of what is a ‘medical
problem’.
Conclusions. There is a clear need for health education and health promotion in this area.
Future work should explore professionals’ knowledge and views of these types of conditions
with the aim of providing guidelines for management in primary care.
Keywords. Family practice, health behaviour, health services accessibility, urinary incontinence.
A number of studies have examined reasons for not
seeking help. People often consider their symptoms to
Introduction
Lower urinary tract symptoms such as incontinence,
urgency, frequency and nocturia are common complaints,
particularly in the elderly, with ~34% of the population
experiencing clinically significant symptoms.1 However,
relatively few people are likely to consult their GP for
incontinence. Help seeking has been estimated as 20,2
35,3 37.6,4 41,5 52,6 577 and 83.1%.8 Of those with severe
symptoms (daily leakage), only about half seek help.4,9
People who consider the symptoms to be problematic or
bothersome are more likely to consult but, again, only
about half report speaking to a doctor.4
be too trivial or not problematic enough, irrespective of
objective severity.10,11 Other, often quoted, reasons are
that urinary symptoms are believed to be a normal part
of ageing,12 or the natural result of childbirth.5 These
beliefs are accompanied by a lack of knowledge of treat-
ment options,10 embarrassment11 and fear of invasive
investigations.13 People who do seek help can be unsuc-
cessful in acquiring treatment for their condition if com-
munication between doctor and patient fails.14 There is a
clear need to identify the barriers to help seeking for
those who could benefit from appropriate advice and
intervention.
This study aims to examine reasons why people do and
do not seek help in order to shed light on barriers to
acquisition of treatment and advice. This analysis is part
of a larger qualitative study of satisfaction with care for
Received 17 March 2000; Revised 27 June 2000; Accepted
5 September 2000.
Department of Epidemiology and Public Health, University of
Leicester, 22–28 Princess Road West, Leicester 1LE 6TP, UK.
48

Barriers to help seeking
49
urinary symptoms and is a preliminary investigation for
Analysis
a more in-depth study of help-seeking behaviour. Access
to care was found to be one aspect of satisfaction with the
care event, but it also warrants examination in relation to
equity of service use and provision. Some people may
never wish to take part in treatment, no matter how
severe their symptoms, and so this study interviewed
people who had agreed to treatment as part of a large-
scale intervention study, but who had either not sought,
or who had not acquired treatment successfully for
themselves in the past. These people were considered
to have an unmet need for services. A small sample of
women were also interviewed who had successfully
sought help and were being treated in a gynaecology out-
patient clinic.
Transcripts were read and re-read and main concepts
identified. The text was then examined line by line,
and each expressed concept was interpreted and given a
category code. Codes were developed that related to the
structure and process of the care event, patients’ views of
illness, views of health care, feelings and person charac-
teristics. The data were also read ‘horizontally’ by read-
ing extracts collected under each category code and the
text destructured further by identifying subcategories.
In this way, a hierarchical coding frame was developed
of main categories and subcategories. Text searches
were also carried out to locate specific words relating
to each category code. Analysis and data collection ran
concurrently to inform sampling and to allow emergent
themes to be pursued in subsequent interviews. Analysis
was carried out by the first author, but interpretation
and coding were agreed with the interviewers as the
study progressed to ensure reliability. Data coded under
the main category ‘access to care’ were extracted for the
present analysis. Themes were developed based on the
hierarchical nature of the coding scheme and on relation-
ships observed between the ‘access to care’ codes and
all other codes. The techniques used in the analysis
were based on those developed by Strauss and Corbin.15
Sampling was continued until no new categories per-
taining to the areas of interest emerged.
Methods
In-depth interviews were carried out by four trained
interviewers. Thirty-one participants were recruited to
the study, 23 female (mean age 57 years, range 38–86)
and eight male (mean age 59 years, range 41–74). Twenty-
six participants were taking part in the pilot phase of a
randomized controlled trial assessing a continence nurse
practitioner service. These participants were identified
initially by postal survey as having storage abnormality
symptoms such as frequency, nocturia, urgency or leak-
age. Outcomes of the trial were assessed by home
interview at 3 and 6 months. Consent to take part in
the qualitative study was sought by the interviewer at
the final outcome assessment. As the qualitative study
was also exploring patients’ views of care, particularly
experiences of urodynamic investigations, participant
selection was based on consent to urodynamics, with
half having undergone urodynamics and half not. Con-
secutive patients were approached until sufficient num-
bers were acquired, with all those approached agreeing
to take part. As part of the purposeful sampling, five par-
ticipants were recruited from a gynaecology out-patient
clinic in order to include the views of people who had
been successful in obtaining treatment for their urinary
problems. These participants were selected randomly
from clinic lists which covered a period of 3 months.
Twelve women were approached, with consent gained
from five. All respondents were, therefore, either under-
going or recently had completed treatment at the time of
interview.
Results
Respondents in this study reported two main reasons
for help seeking. One was the fear of serious underlying
disease such as cancer, and the other was the presence of
significant distress or impact on quality of life. Pain was
considered a symptom that warranted medical inter-
vention, as this was thought likely to signify disease, and
was expected to be treatable. Urinary symptoms such as
leakage, frequency and nocturia generally appeared to
fall into the second category, although men often viewed
the symptoms as indicative of serious pathology because
of their awareness of prostate cancer. Women were less
likely to consider these symptoms a disease state and
often were completely unaware of available interventions.
Respondents had their own representations of a
legitimate ‘medical problem’ and often considered these
types of symptoms too trivial to present to their GP.
“There was nothing really wrong with me and I felt
that it was just a muscle problem.” (Respondent 1)
Respondents were interviewed in their own homes
and the interviews were taped and then transcribed
verbatim into QSR Nud*ist 4 (Qualitative solutions and
Research Pty Ltd) software for analysis. The interviews
lasted ~1 hour and covered topics related to satisfaction
with all aspects of the care they had received. An inter-
view guide was used which was based on a review of the
satisfaction literature.
Representations of a ‘medical problem’ were not
necessarily dependent on severity of symptoms. One
woman was wet every day when she had a cough, but on
consulting the doctor she only mentioned the cough.
Few people talk openly about these types of symptoms
and so lay knowledge is poor. There was greater aware-
ness in men about prostate problems but awareness of

Family Practice—an international journal
50
treatment for urinary symptoms in general was often
non-existent. The woman mentioned above explained
that she had not reported her urinary symptoms to the
doctor because she had no knowledge of these issues
from her social circle and so was unaware that treatment
was available.
As symptoms were not considered a medical problem,
they tended to be normalized, and management strat-
egies incorporated into the patients’ lifestyles. A passive,
accepting attitude was adopted.
was available, and made assumptions about the doctor’s
views of the causes and treatments of urinary symptoms.
“I mentioned it to the doctor but he never picked up
on it, never gave me any advice . . . It seems to be
‘oh, you have had children, it’s something you have
to put up with’ so I never took it any further.”
(Respondent 14)
When the GP did discuss the symptoms, the patient
sometimes failed to communicate their concerns. If asked
how problematic the symptoms were, the patient’s inter-
pretation of the word ‘problem’ took on a different
frame of reference. One respondent told the doctor that
symptoms were not a problem (interpreted as a serious
health threat) but later claimed they had sufficient im-
pact to require treatment, as their sleep frequently was
disturbed. However, the doctor did occasionally give
poor advice, making suggestions such as
“I’d just accepted it that it was part of, well part of
life I suppose.” (Respondent 24)
The insidious onset of symptoms contributed to the
normalization process. Respondents often experienced
symptoms for many years, sometimes since childhood.
If they had not actually had problems there was the per-
ception that they had always had a weak bladder. How-
ever, even if symptoms were accepted and coping was
relatively successful, people still felt a need for help.
“The more you go the more you are clearing your
fluids out.” (Respondent 21)
“She said ‘Somebody can help you’ and I thought
‘Oh I wish’.” (Respondent 7)
A commonly reported occurrence was failure to revisit
the doctor, even when symptoms deteriorated. The
respondent quoted above reported a gradual worsening
of symptoms but felt that he should not seek help again,
until he received a questionnaire as part of the present
study. Similarly, if treatment was not acceptable, due
to side effects for example, patients sometimes did not
return for further advice. Patients were very responsive
to the doctor’s approach and could be either encouraged
or discouraged from discussing sensitive issues.
Severity was the important factor running through
all accounts. There was variation in how severe the
condition was before people were unable to cope with
symptoms. The benefits of treatment had to be perceived
to overcome emotional costs, such as embarrassment.
Help seeking often was triggered by worsening of
symptoms, creating greater impact on quality of life
and/or fear for the future. All respondents considered
symptoms to be long term and progressive, resulting in a
fear of becoming ‘incontinent’ in older age, especially
when there was prior experience of this.
“and my grandmother was incontinent and I can
remember her smell was terrible and I can’t end up
like that, just cannot.” (Respondent 5)
Other triggers to help seeking were specific events
such as leaking during sex, or leaking in public. This
undermined the illusion of coping.
Older people were less likely to seek help. This was
viewed as a generational difference, as older people had
been children pre-NHS, and were brought up with the
attitude that the doctor was only consulted in extreme
circumstances. They were more prepared to ‘put up with
things’ and ‘get on with life’, and felt that this was a habit
that was difficult to break.
Some people were unsure about consulting and sought
help indirectly by ‘just mentioning’ symptoms whilst
attending for regular health checks. If the GP did not
respond, the patient was often too embarrassed to broach
the subject again, or decided against it because they
feared physical examinations or invasive treatments.
Some respondents realised that they should be more
explicit or persistent in help seeking but refrained for the
same reasons.
Discussion
The most common theme to emerge from this research
was lack of awareness about the condition, its causes
and its treatments. Such barriers to help seeking are
not specific to urinary symptoms. Facione,16 in a review
of help seeking for breast cancer, found lack of aware-
ness of the significance of symptoms a common theme
reported by investigators, and people who seek help
promptly for cardiac symptoms have been found to have
greater cardiovascular knowledge than those who delay.17
Lack of awareness of available treatments or fear of
invasive treatments has also been reported in other
conditions. Ansong et al.18 found that only 27.6% of men
identified as impotent were aware of the availability of
treatment, and 16.2% of those not seeking help believed
that treatment was risky or harmful. The present research
suggested that sensitive conditions such as incontinence
are not discussed frequently in social situations, reducing
“I supposed if I had nagged on they would have
eventually found it wouldn’t they, but I was worried
I might have to be cut again” (Respondent 29)
Some interpreted the doctor not addressing the issue
in these circumstances as an indication that no treatment

Barriers to help seeking
51
opportunities for informal acquisition of information.
People are also less likely to discuss stigmatizing con-
ditions with a doctor. As in the present study, shame and
embarrassment have been reported as barriers to help
seeking in conditions such as alcohol abuse,19 impotence,18
hearing impairment20 and depression.21 Health pro-
motion and education should be directed at these more
‘taboo’ areas in order to allay fears and misconceptions,
and promote awareness of symptoms and treatments.
In line with previous research, urinary symptoms were
considered by participants as a normal part of ageing.12
As well as being more reluctant to access professional
help, older people may have a more general acceptance
of deteriorating health.20 Older persons delay longer
in seeking help for all types of cancer compared with
younger people,16 and accept conditions such as hearing
impairments as being a part of normal ageing.20 Of course,
elderly people are more likely to have poorer health
and a greater number of co-morbidities, with urinary
dysfunction being a result of conditions such as stroke,
dementia, Parkinsons disease, etc. However, even if
urinary symptoms appear insignificant in the presence of
other pathologies, alleviation of these symptoms could
have a major impact on the quality of life of both patient
and carer. However, urinary dysfunction is also common
in the fit elderly, and health professionals should target
at-risk groups for investigation of possible urinary
disorder.
embarrassing probing. Such a scale should be sensitive to
a wide variation in symptoms and also to change, so that
treatment outcomes could be assessed.
Attitudes of men and women to help seeking were
very similar, apart from the finding that men were more
aware of prostate problems and were more likely to
seek reassurance that there was no serious underly-
ing pathology. Both men and women were embarrassed
at reporting symptoms, were unaware of treatment
options and fearful of surgical interventions, and were
just as likely to consider symptoms a normal part of
ageing.
The present research considered help seeking for
urinary problems from the patient’s perspective, but the
findings indicated a need also to explore the knowledge
and attitudes of professionals. Treatment for urinary dys-
function can be simple but time consuming. However, in
milder cases, self-help information concerning bladder
re-education or pelvic floor exercises may be sufficient.
The primary care team should be aware of the avail-
ability of specialist services such as continence advisory
services and continence helplines as a possible first line
intervention. There is a need for evidence-based guide-
lines in relation to urinary symptoms for use in primary
care by both doctors and nurses.
Acknowledgements
The main trigger to help seeking identified in this
research was the impact of symptoms on quality of life.
Although this is likely to be dependent on severity of
symptoms, the relationship between severity of symptoms
and help seeking is not strong.4 It is, perhaps, impact that
is of greater predictive value in estimating the need for
service provision. The degree of impairment in daily
activities has been found to be associated with help seek-
ing in other similar non-life-threatening conditions.21,22
In the present study, the failure of the patient to com-
municate the extent of impact was a barrier to treatment
provision. One reason for this is that patients often
present indirectly by consulting with other, less bother-
some symptoms. Depression is a missed diagnosis in 50%
of individuals who consult a physician, as the primary
motive for consultation is rarely depressed mood, but a
symptom of depression such as sleep disturbance or
somatic complaints.23 Similarly, nocturia may be presented
as sleep disturbance, or incontinence may be the real
problem when frequency or urinary tract infections are
the primary reason for consultation.
The authors wish to gratefully acknowledge the con-
tribution of Mr Chris Mayne, Consultant Obstetrician at
Leicester General Hospital, for help in recruiting people
to the study, and to everyone who agreed to be inter-
viewed. This study was funded by the Medical Research
Council as part of the Leicestershire MRC Incontinence
Study. The views expressed are those of the authors and
not the funding body.
References
1
Perry S, Shaw C, Assassa P et al. and the Leicestershire MRC
Incontinence Study Team. An epidemiological study to
establish the prevalence of urinary symptoms and felt need
in the community: The Leicestershire MRC Incontinence
Study. J Public Health Med 2000; 22: 427–434.
2
Seim A, Sandvik H, Hermstad R, Hunskaar S. Female urinary
incontinence—consultation behaviour and patient experiences:
an epidemiological survey in a Norwegian community. Fam
Pract 1995; 12: 18–21.
3
Simeonova Z, Bengtsson C. Prevalence of urinary incontinence
among women at a Swedish Primary Health Care Centre. Scand
J Prim Health Care 1990; 8: 203–206.
Burgio K, Ives DG, Locher JL, Arena VC, Kuller LH. Treatment
As well as using an indirect approach, patients also
reinterpret the impact of the symptoms during the con-
sultation. Their symptoms suddenly seem insignificant
and trivial. However, the doctor can only make an assess-
ment of the severity of the symptoms based on patients’
reports. A solution would beasimpleseverity of symptoms
and quality of life scale that is quick and easy to com-
plete, allowing detailed assessment with the minimum of
4
seeking for urinary incontinence in older adults. J Am Geriatr
Soc 1994; 42: 208–212.
Goldstein M, Hawthorne ME, Engeberg S, McDowell J, Burgio K.
5
Urinary incontinence: why people do not seek help. J Gerontol
Nurs 1992; 18: 15–20.
Brocklehurst JC. Urinary incontinence in the community—analysis
6
of a MORI poll. Br Med J 1993; 306: 832–834.

Family Practice—an international journal
52
7
16
McGrother CW, Castleden CM, Duffin H, Clarke M. Do the elderly
Facione NC. Delay versus help seeking for breast cancer symptoms:
a critical review of the literature on patient and provider delay.
Soc Sci Med 1993; 36: 1521–1534.
Bleeker JK, Lamers LM, Leenders IM et al. Psychological and
knowledge factors related to delay of help-seeking by patients
with acute myocardial infarction. Psychother Psychosom 1995;
63: 151–158.
Ansong KS. Lewis C, Jenkins P. Help-seeking decisions among men
with impotence. Urology 1998; 52: 834–837.
Schober R, Annis HM. Barriers to help-seeking for change in
drinking: a gender-focused review of the literature. Addict
Behav 1996; 21: 81–92.
van den Brink RHH, Wit HP, Kempen GIJM, van Heuven MJG.
Attitude and help-seeking for hearing impairment. Br J Audiol
1996; 30: 313–324.
McIntosh J. Postpartum depression: women’s help-seeking behav-
iour and perceptions of cause. J Adv Nurs 1993; 18: 178–184.
Kaskutas LA, Weisner C, Caetano R. Predictors of help seeking
among a longitudinal sample of the general population, 1984–
1992. J Stud Alcohol 1997; 58: 155–161.
need better incontinence services? Community Med 1987; 9:
62–67.
McDowell BJ, Engberg SJ, Rodriguez E, Engberg R, Sereika S.
Characteristics of urinary incontinence in homebound older
adults. J Am Geriatr Soc 1996; 44: 963–968.
Burgio KL, Matthews KA, Engel B. Prevalence, incidence and
correlates of urinary incontinence in healthy, middle-aged
women. J Urol 1991; 146: 1255–1259.
Simons J. Does incontinence affect your clients’ self-concept.
J Gerontol Nurs 1985; 11: 37–42.
8
9
17
18
19
10
11
Harrison GL, Memel DS. Urinary incontinence in women: its
prevalence and its management in a health promotion clinic.
Br J Gen Pract 1994; 44: 149–152.
20
12
13
Mitteness LS. The management of urinary incontinence by
community living elderly. Gerontologist 1987; 27: 185–193.
Norton PA, MacDonald LD, Sedgwick PM, Stanton SL. Distress
and delay associated with urinary incontinence, frequency and
urgency in women. Br Med J 1988; 297: 1187–1189.
Mitteness LS, Barker JC. Stigmatizing a ‘normal’condition: urinary
incontinence in late life. Med Anthropol Q 1995; 9: 188–210.
Strauss A, Corbin J. Basics of Qualitative Research. London: Sage
Publications, 1998.
21
22
14
15
23
Ohayon MM, Priest R, Guilleminault C, Caulet M. The prevalence
of depressive disorders in the United Kingdom. Biol Psychiatry
1999; 45: 300–307.