BJHP 128—2/5/2007—ANISH—214661

Transcription

BJHP 128—2/5/2007—ANISH—214661
BJHP 128—2/5/2007—ANISH—214661
1
British Journal of Health Psychology (2006), 00, 1–18
q 2006 The British Psychological Society
The
British
Psychological
Society
www.bpsjournals.co.uk
Patterns of self-referral in men with symptoms
of prostate disease
Susan Hale1, Sarah Grogan1* and Sara Willott2
1
2
Staffordshire University, UK
University of Birmingham, UK
Objective. Analysis of health statistics reveals that, although men have a shorter life
expectancy and a higher mortality rate than women, they have less contact with their
GP. This study investigates men’s experiences of prostate disease, with a particular
focus on how they made the decision to seek medical help.
Method. Semi-structured interviews were carried out with 20 men aged 51–75 with
prostate disease who had recently contacted their GP. These were audiotaped,
transcribed and subjected to interpretative phenomenological analysis.
Results. Analysis revealed that their referral behaviours were profoundly influenced
by a need to live up to traditional images of masculinity. Far from being uncaring, men
were extremely anxious about their health and fears about the effects of illness and
treatment emerged as major influences on their decision to seek help. Their delay in
approaching their GP was due to their beliefs about symptoms as markers of serious
disease, their ability to hide symptoms from others and their attitude towards male GPs
who were often seen as having negative attitudes towards male patients.
Conclusions. This study identifies some reasons why men with prostate disease may
fail to seek medical care and has implications for increasing referral rates for men.
An analysis of health statistics reveals that men have a shorter life expectancy than women
of approximately 5 years, and although this is decreasing (from 6 years in 1981 to 4.9 years
in 1998), a significant gap still remains. Although women live longer they are more likely
to report a long-standing illness (National Statistics, 2001; Office for National Statistics,
1996) and to have received medical treatment than men (Department of Health 2001;
Office for National Statistics, 1998). This appears to suggest that men have better health
than women until they develop sudden life-threatening illness and die. A second
interpretation is that men do not have better health but ignore symptoms, fail to seek
medical help and present with advanced disease. The diseases that men are more prone
to, such as cancer, circulatory diseases, bronchitis and liver disease are ones that are often
fatal if help is not sought early in the course of the disease (Kirby, Kirby, & Farah, 2000).
* Correspondence should be addressed to Sarah Grogan, Department of Psychology, Staffordshire University, Stoke on Trent,
Staffordshire ST4 2DE, UK (e-mail: [email protected]).
DOI:10.1348/135910706X118413
BJHP 128—2/5/2007—ANISH—214661
2 Susan Hale et al.
This view is supported by work that suggests that men are less likely to consult their GP
with health problems (Holroyd, 1997; Kapur et al., 2004), make less use of general health
checks and screening than women (Thorogood et al., 1993) and often seek help for
symptoms late in an illness episode, sometimes with fatal results (Dearnaly, 1994).
Models of decision-making have been used to predict a range of health behaviours
Q1 including attendance for screening (see Sheeran & Abraham, 1995). Despite this, many
of the factors that influence behaviour remain unexplained and recent studies suggest
that these models are even less predictive for males (Moore, Barling, & Hood, 1998;
Munley, McLoughlin, & Foster, 1999). This suggests that other as yet unknown factors
are important in men’s decisions to take part in health behaviours and screening checks.
One explanation for the morbidity and mortality difference between the sexes relates
to symptom perception. Numerous studies have found that men report fewer symptoms
than women and this male–female difference appears regardless of the type of study,
method of investigation or population under investigation (Gijsbers van Wijk &
Kolk, 1997). It is this higher reporting of symptoms by women that led to their being seen
as having a poorer health status than men (Gijsbers van Wijk, Huisman, & Kolk, 1999).
This view has been questioned by other studies that indicate that men experience
symptoms to the same extent as women (Macintyre, 1993; Macintyre, Ford, & Hunt,
1999) and other reasons have been given for men’s lower levels of symptom reporting.
The recognition of a sensation as a symptom is dependent on the illness cognitions of
the individual and these are seen as involving beliefs related to the identity of the illness,
its perceived cause, timeline, consequences and curability (Leventhal et al., 1997).
These beliefs act as a framework, informing individuals how to recognize sensations as
symptoms and to understand and cope with illness. Men’s health has not been
medicalized to the extent that women’s health has been, nor are men confronted by
health advice in magazines to the extent that women are (Gijsbers van Wijk & Kolk,
1997). This may have led to the situation that men have less well developed health
cognitions than women and are less inclined to interpret bodily sensations as illness
(Kolk, 1994). While girls may be taught to attend to bodily processes in puberty, boys are
expected to display stoicism and ignore physical symptoms (Mechanic, 1966; Petersen,
1998) leading to ‘internal inattentiveness’ (O’Brian, 1990).
Components of the health belief model have been found to be important predictors
of self-referral (Campbell & Roland, 1996; Van de Kar, Knottnerus, Meertens, Dubois, &
Kok, 1992) with the perceived severity of the symptoms playing a major role in
encouraging individuals to seek help (De Nooijer, Lechner, & de Vries, 2001; Månsson,
Anderson, & Colleen, 1993; Moser, McKinley, Dracup, & Chung, 2005; Walsh, Lynch,
Murphy, & Daley, 2004). Having sufficient information to identify the symptom as
serious has been identified as important in help seeking (De Nooijer et al., 2001) as is
symptom progression. Symptoms with a slow onset or a fluctuating pattern are less
likely to be acted upon (Moser et al., 2005; Pattenden, Watt, Lewin, & Stanford, 2005).
Older individuals are more likely to delay (Ramirez, Westcombe, Burgess, & Sutton,
1999) particularly if symptoms are seen as a normal sign of aging (Ogden, 2003). In this
group, atypical symptoms alone do not trigger self-referral (Cameron, Leventhal, &
Leventhal, 1993), and social and peer groups are important in defining symptoms as
normal (Croyle & Hunt, 1991). A number of studies have shown that seeking advice
from wives or partners leads to an increase in men’s self-referral rates (Norcross,
Ramirez, & Palinkas, 1996; Tudiver & Talbot, 1999; Van de Kar et al., 1992).
Other factors that have been found to delay help seeking include the fear of being
diagnosed with cancer (De Nooijer et al., 2001) and for men, the perception of
BJHP 128—2/5/2007—ANISH—214661
Patterns of self-referral in men with symptoms of prostate disease
3
symptoms as a threat to masculinity (Gascoigne, Mason, & Roberts, 1999; Tudiver &
Talbot, 1999). One widely accepted explanation for the difference in consultation rates
is that women may be more willing to accept that they have an illness and seek help than
men. Lee and Owens (2002) see this as being due to men adopting behaviours
consistent with the ‘male’ role and for many men masculinity is positively associated
with not visiting their GP (Courtney, 2000).
In mainstream psychology, research has tended to focus on specific areas such as
health behaviours, symptom perception, illness behaviour or interactions with
healthcare providers. This fragmented approach to exploring how individuals
experience and cope with illness has been criticized (see, for instance, Crossley, 2000).
Although work focusing on specific areas appears to show how individual aspects of
health behaviour are influenced by being a man, they do not demonstrate how these
factors interact in influencing men’s health behaviours. In order to improve health care
provision for men, an integrated approach to research is necessary. Several researchers
have also commented on what Watson calls the ‘absence of knowledge grounded in the
everyday experiences of men themselves’ (Lee & Owens, 2002; Smith, 1996; Watson,
2000). Clearly it is important to understand men’s experiences from their own
perspective (Lee & Owens, 2002). This study attempts to take an integrated approach,
adopting a critical realist approach to the study of men’s experiences of health and illness.
The present study
The aim of this study was to explore the way men make the decision to seek medical
help by examining the experiences of men who have recently sought medical help for
symptoms of prostate disease. It also aims to provide an understanding of how they
perceived and evaluated their symptoms and how this influenced their contact with
health care services.
Prostate disease is an ideal focus for examining men’s health care behaviour in that it
is a common health problem in older men (Garraway et al., 1993). The symptoms are
often extremely intrusive but men often delay seeking help (Simpson, Lee, Garraway,
King, & McIntosh, 1994). Symptoms may indicate a common condition, benign
prostatic hypertrophy (BPH), or cancer of the prostate (P Ca). Prostate cancer is now
the most common male cancer (Prior & Waxman, 2000) and in the UK 50–60% of
patients are diagnosed late with metastatic disease (Dearnaley, 1994). Since treatment is
more effective in the early stages of the disease (Charaten, 1998; Dearnaley, 1994), an
awareness of the factors that influence men’s decision to seek medical help may lead to
interventions that have the potential to reduce mortality from this disease.
Method
Rationale
As the aim of this study was to provide an insight into, and analysis of, men’s views and
experiences, it was felt that the most appropriate approach would be a qualitative one.
Interpretative phenomenological analysis (IPA) is a method of data analysis that
integrates not only the linguistic, but also the physical and social dimensions of ill health
(Smith, 1995; Smith, Jarman, & Osborn, 1999). It is consistent with other approaches in
health psychology in seeing a connection between physical condition, cognition and
verbal response, and as such acknowledges the existence of entities such as bodies and
physical states (Smith, 1996). It is therefore an ideal methodology for examining
BJHP 128—2/5/2007—ANISH—214661
4 Susan Hale et al.
personal accounts of physical processes and is able, through the use of in-depth semistructured interviews, to obtain rich accounts of how individuals deal with complex
health-related problems.
Participants
Twenty men aged 51–75 years who had been diagnosed by their GP as having prostate
disease were identified from a list of patients waiting for appointments at the urology
clinic of a large district general hospital in the north west of England. This department
offers rapid access to specialist care and men who present to their GP with symptoms of
prostate disease are usually seen within 2 weeks. This meant that participants would still
have a clear memory of what factors influenced their decision to approach their GP with
symptoms. All participants had coped with prostate symptoms for many months before
seeking help but because of the insidious onset of symptoms and the fluctuations in
symptom intensity, many had no clear idea of when symptoms first occurred. All
participants had both the experience of coping with symptoms prior to seeking help
and making the decision to seek help.
All suffered from urinary frequency and at least one other symptom of prostate
disease: dribbling, nocturia (frequent urination at night), hesitation and urgency, and all
except two participants had a number of other health problems for which they were
receiving treatment such as asthma, diabetes and heart disease. Sampling was purposive
in nature and aimed to recruit as diverse a group as possible (regarding class, education
and age) within the target group. Only those known to be non-English-speaking or
learning disabled were excluded from participation.
Procedure
All participants were sent a list of the interview topics prior to the interview to reduce
anxiety and to give participants time to reflect on their possible responses.
These topics were generated through pilot interviews with two men already
diagnosed with prostate disease, who were encouraged to talk about their health
generally and particularly about their experience of prostate symptoms. These interviews
were audiotaped and used to generate a list of interview topics in the form of open-ended
questions. Topic areas that arose from this included: participants past health history, their
responses to and feelings about symptoms and their contact with health services. The
topic list was not designed to be prescriptive, but to ensure that important areas of
investigation were not overlooked during the interview, and to provide a framework
around which men could talk about their experiences of health and illness.
All participants were interviewed in their own homes by the first author, who was
introduced to participants as a nurse and psychology researcher. They were reminded
that the interview would be recorded and their right to withdraw from the research
process at any time was reiterated. All participants chose a pseudonym to conceal their
identity and signed a consent form prior to the interview. Interviews lasted between 40
and 80 minutes and were concluded when all areas had been covered. The aim was to
recruit participants until the analysis revealed that saturation (a situation when no new
information is generated from transcript analysis; Chamberlain, 1999) had been
achieved. Saturation was achieved by interview 16, but several participants who delayed
responding initially also wished to take part and it was deemed courteous to allow them
to express their views. This gave access to a particularly rich data set and enabled the
resulting analysis to be grounded in a larger sample of participants.
BJHP 128—2/5/2007—ANISH—214661
Patterns of self-referral in men with symptoms of prostate disease
5
Ethical issues
Prior to the study’s commencement ethical approval was sought from and granted
by the Local Research Ethics Committee and the guidelines prescribed by the British
Psychological Study (1995) were used to inform ethical practice throughout the
study. Issues particularly pertinent to this study included participants’ right to
withdraw from the research process and their right to confidentiality. All
participants were provided with an information sheet that informed them of the
purpose of the study and what would be involved in taking part. This made clear to
participants that the interview would be audiotaped and transcribed and discussed
how the data may be used in publications or reports. Participants were assured that
taking part was voluntary and that they could withdraw from the study at any time.
Non-verbal cues were used to assess the participants’ reaction to questions and to
avoid trespass into sensitive areas that they may wish to avoid. At the end of each
interview, each participant was given the opportunity to make any comments
regarding the interview or its contents and care was taken to leave participants in a
positive frame of mind.
Data analysis
The audiotaped interviews were transcribed verbatim and analysed using IPA. In
this analysis the method of using IPA was similar to that outlined by Smith et al.
(1999).
Transcripts were first read and reread to gain an overview of each individual
account. Following this, each transcript was analysed individually and then
compared with others to elicit shared themes. While some themes were related to
interview topics, others emerged from participants’ concerns or reflected common
beliefs or ways of thinking. Themes were then merged into groups, each related to
a specific area of experience. While Smith et al. (1999) suggests that themes that
were not rich in evidence can be dropped at this stage, in this analysis all the
themes found were integrated within, or subsumed by, the four superordinate
themes presented in the final analysis.
Themes were checked frequently with the original data to ensure that any insights
were grounded in the research findings themselves and these shared themes were
converted into flow diagrams to enable the patterns, connections and tensions within
the theme to be explored. The research process was cyclical in nature in that transcripts
were frequently reanalysed in the light of insights gained from the analysis of later
transcripts. While IPA attempts to take an ‘insider perspective’ (Conrad, 1987), it
accepts that direct access to a participant’s world is impossible and any exploration is
influenced by both the researchers’ view of the world and the interaction between the
participants and the researcher.
Reliability and validity
Smith (1996) suggests several criteria to assess the internal validity and reliability of
qualitative research, the most important being internal coherence and the presentation
of evidence. Internal coherence refers to whether the argument presented in the study
is internally consistent and justified by the data. The presentation of evidence in the
form of transcript extracts allows the reader to evaluate the interpretation made by the
researcher. In a previous study using IPA, Osborn and Smith (1998) used ‘independent
BJHP 128—2/5/2007—ANISH—214661
6 Susan Hale et al.
audit’ as a way of establishing validity by having a second researcher to monitor the
emergent analytic account. The aim is not to produce a definitive analysis through interrater reliability, but rather to verify that the analysis has been systematically achieved and
is supported by the data. Although the first author carried out the analysis, this was
cross-validated by the other authors.
Extracts from the transcripts have been used to illustrate and support emergent
themes to enable the reader to assess the reliability and validity of these. For the
purposes of this paper, we have been necessarily selective and only included a
representative sample of participant responses.
Emergent themes
On analysis, four superordinate themes emerged; ‘Living up to the image’, ‘Normal or
illness?’, ‘Protecting the image’ and ‘Engaging with the system’. While each of these
dealt with a different aspect of men’s experiences with prostate problems they were
also interrelated. The first theme ‘Living up to the image’ showed how images of
masculinity pervade and influence the lives of these men.
Living up to the image
While the health of men is often linked to reduced life expectancy, all participants saw
being male as conferring health benefits, and men as being intrinsically healthier than
women. Masculine or ‘macho’ behaviour, however, was seen as having a negative
influence on men’s health and was used to explain men’s tendency to ignore health
problems:
it’s always been like that, men used to go round with arms hanging off before : : : etc and
things like that, when you look back basically men have always been cursory about their
health.
Leslie
While the men in this study acknowledged the influence of the macho image on others,
they saw this behaviour as leading to self-inflicted health problems and rejected its
influence on themselves:
Not being a macho man I wouldn’t go down to the pub and have 15 pints.
Robin
Many, however, commented on the social pressures to live up to masculine images:
Q3
I think a lot of men do that, we’ve got to be : : : macho, it’s quite hard because we’re not : : :
a lot of the time we get frightened : : : it’s very hard to be a man—.
Bill
These men’s images of masculinity came from a number of sources and although images
from the media were cited, the strongest influences were from their past. Fathers were an
important influence on many men, not only in forming their ideas about appropriate
masculine behaviour, but also in terms of the health and illness behaviours they adopted.
Many had memories of a time before the welfare state, and how they had been
brought up to be ‘tough’ and healthy to provide for their family:
it’s a matter of survival and er, you had to look after yourself in order to um : : : to remain in
a job.
Mike
For many of the older men, who had experienced conscription, life in the armed forces
had had a marked effect on participants. Peer pressure often enforced adherence to
hypermasculine stereotypes with pressure on men to ‘toughen up’. This includes not
BJHP 128—2/5/2007—ANISH—214661
Patterns of self-referral in men with symptoms of prostate disease
7
only the suppression of emotions but also learning to ignore symptoms, particularly
those of potentially embarrassing health problems:
Q3
I’ve known guys even in the service wouldn’t go sick if it was a personal thing, right, they
would try and struggle on—.
Sparky
The need to appear strong was often given as reason for not seeking medical advice
There was great resistance to giving in to illness because this would be construed as
‘weakness’ and many commented on how they struggled on when ill:
Q3
I could never stay in bed : : : some people as you know can stay in bed if they’ve got the
slightest cough or sneezing but I could never ever do that—.
Mike
yeah, got to haven’t you otherwise they start saying oh he’s a baby him, all men are the
same.
Tom
This pressure seems to come from two sources. Mike does not want to identify with
those who stay in bed for minor illness, whereas Tom keeps on because he does not
want the contempt of those around him. These reflect strong social pressures on men
through external and internalized values.
Normal or illness?
Several participants commented on how little they knew about the prostate prior to
developing problems with it:
I didn’t even know I’d got one of these, a prostate.
Bill
Despite this lack of anatomical knowledge there was a widespread awareness of the
commonality of prostate symptoms in older men but these were rarely seen as related to
illness:
I put it down to age more than anything else, say wear and tear.
Dixie
Prostate symptoms had little status compared to other illness:
You go in the surgery and there’s all sorts of people there and they’re ill and I don’t consider
myself ill : : : I can walk about and do things, I mean there’s people in there that aren’t very
well at all bad hearts or whatever.
Bill
Denying prostate problems the status of ‘illness’ makes it difficult for men to seek help
and support and means that if they wish to take symptoms seriously they risk appearing
‘unmasculine’ in fussing about their health.
While the belief in the normality of symptoms was reassuring, most men were still
anxious about the possibility of prostate cancer and all participants either mentioned
this explicitly or alluded to it:
The obvious concern is – have you got cancer, right?
Mike
While episodes of pain due to cystitis or prostatitis were often a stimulus to self-referral,
one symptom above all others was accorded special significance. Blood in the urine
(haematuria) was the one symptom named by all the men that would encourage them to
visit the GP sooner because:
You associate blood with, er, a growth of some sort don’t you?
Sparky
Unless they developed heamaturia or painful symptoms all participants had ignored
their symptoms, often for years. Almost all the participants knew of at least one man
BJHP 128—2/5/2007—ANISH—214661
8 Susan Hale et al.
who had been treated for or who had died of prostate cancer, but this did not seem to
stimulate those with similar symptoms to consult their GP any earlier. One participant
had symptoms for over 2 years before visiting his doctor, despite the fact his brother had
died of prostate cancer during this time.
Only four of the 20 men had regular ‘well man’ medical checks. The most common
reason given for avoiding health checks was fear of finding disease:
Don’t start looking for trouble because you’ll find it, don’t you? That’s life isn’t it. If you start
looking for it you’ll find it, if you start looking for faults in the house you’ll find plenty and
that’s life : : : .
David
David seems to indicate that ill health is always there to be found but is not ‘real’ until
doctors have uncovered it. While several participants commented on having heard radio
programmes or reading articles on prostate cancer, it seems to have made little
impression on participants or encouraged them to seek medical help. Home medical
books were seen as a source of anxiety and many said they avoided seeking information
because ‘you can frighten yourself’:
we sort of shy off, no I don’t want to know, don’t want to find out, don’t want to know : : :
that if I’ve got it, it might go away.
Myles
This avoidance of written information because of the anxiety it generated, was a
prominent theme in many of these men’s accounts. In contrast, information given face
to face from a trusted and knowledgeable source was valued:
She sat down and explained to me what the prostate was, where it was and the problems for
men of my age and I felt a lot better because somebody sat down.
Bill
Several men approached friends and relatives for information and advice and contact
with other men who had had treatment was particularly sought. Unfortunately, some of
the information from others was less than reassuring:
I’ve got plenty of old friends, old timers like me who have the problem and we discuss it,
you know : : : these old fellas have had operations, you know, had prostate and it’s not done
any good.
Myles
These examples of men exchanging health information are contrary to the image of
men as uncommunicative about personal problems. Symptoms were often difficult
to hide when socializing (particularly as drinking alcohol often exacerbated them)
and this frequently led to a comparison of symptoms and experiences. Talking with
others was an important way of dealing with the anxiety that symptoms provoked,
as groups of friends:
treat it as a bit of a joke, because we do, the three of us, joke about it, but at the back of your
mind but it isn’t.
Georgie
The thought of having cancer appeared to provoke great anxiety in these men and they
responded by avoiding or ignoring information, by defining their symptoms as ‘normal
for men’ and attempting to reduce anxiety through the use of humour.
Protecting the image
Prostate symptoms were often seen as a threat to participants’ masculinity and many of
the reasons that were given for late self-referral related to attempts to protect the image
they presented to others. Although symptoms were the usual stimuli for individuals to
BJHP 128—2/5/2007—ANISH—214661
Patterns of self-referral in men with symptoms of prostate disease
9
seek help from their GP, the relationship between symptoms and self-referral was not
clear-cut and many men tolerated quite severe disruption to their lifestyle for long
periods without seeking help. Provided symptoms could be hidden from others then
their impact on self-image could be minimized:
Nobody knew, used to go dancing, best bib and tucker, nobody knows do they.
Sparky
As symptoms became more severe they became more public, affecting all aspects of
participants’ lives. Urgency frequently led to participants being forced, in the absence of
lavatories, to break social conventions and urinate in the street and hesitancy led to fears
of being arrested for ‘loitering with intent’.
The ability to cope with problems mitigates against early self-referral and it was
only when symptoms shifted from something coped with privately to them
becoming public knowledge through episodes of urinary leakage or fear of this, that
men sought help:
I was working on a shopping mall a couple of weeks ago and, erm, on stands whatever, it’s
just a case of once it overcomes you that’s the end of it and it was a case of I couldn’t quite
make it.
Robin
Urinary leakage was often described as a ‘lack of control’ by participants who often
likened it to babyhood, and this had a profound effect on self-esteem. The very act of
seeking medical help appeared to be seen as threatening their image of masculinity and
younger participants were often ashamed of having what they saw as ‘an old man’s
disease’. Self-referral was inhibited by participants’ own negative views of illness and
they often had negative views about the sort of people who attended their GP:
I’m not the sort of person who would necessarily bother a GP or run to a GP very, you know,
sort of straight away.
Leslie
Having to visit the GP meant that they identified themselves with those who ‘bothered’
their doctors.
Wives often had an important role in men’s health not only in providing physical
care but also in legitimating illness behaviour such as seeking medical help, staying
off work and resting. Many participants only sought help with symptoms because
their wives ‘put pressure’ on them to consult their GPs. As seeking help tends to be
viewed as a feminine behaviour, the men’s comments that they are only attending
due to their wives insistence allows them to seek medical help or attend screening
without compromising their own notions of masculinity. In this way, wives may
facilitate earlier self-referral by providing an acceptable excuse for consulting a
doctor.
One of the main reasons given by over half the participants for their reluctance to
self-refer was the prospect of having a rectal examination:
The thing that put me off from the very beginning is the rectal examination : : : I just didn’t
fancy it.
Myles
Several participants described rectal examinations as ‘tampering’, a word sometimes
used to describe sexual abuse.
Fear of serious disease and hospitalization, a situation characterized by dependency
and lack of control, emerged as a major reason why men fail to report symptoms:
I don’t know : : : what put me off, I couldn’t really say, maybe it was fear of them saying that
you’ve got cancer.
Myles
BJHP 128—2/5/2007—ANISH—214661
10 Susan Hale et al.
Many of these men joked about the treatment of prostate problems, made jokes about
penile amputation and having ‘it lopped off’:
I thought that, it’s an appendage right, for a start right, it’s like a finger, it’s get at able right,
right, it’s removable.
Sparky
One participant, who is only 52, joked that his future includes a permanent urinary
catheter:
And when I’ve got the catheter fitted I’ll tell you (laughs)[ : : : ]that would be great walking
about with a football bag on your side, yeah : : : I’m half Jewish I’ll have to get the shoes to
match the bag.
Robin
Although men joke about their treatment of and future with prostate disease this reflects
very real underlying concerns and represents a lack of knowledge about modern
treatments for prostate cancer.
Engaging with the system
This theme relates to the participants perceptions’ of the health care system and how
these influenced patterns of self-referral.
Over half the participants had complaints about GPs they had seen who they felt
were poor diagnosticians, had inadequate knowledge about the treatments they
prescribed and were inept in physical examination. Anxiety was often fuelled by media
stories of neglect, litigation and compensation. Even for those with little prior
experience of care, media reports were often a cause of anxiety:
you read about these needless operations, don’t you, you see them on television, giving
people operations that are not necessary, you know.
Edwin
In this study, nearly all participants mentioned relatives or friends with health care
experience in the course of the interview. These individuals seemed to be looked to as
not only interpreters of medical discourse, but also served to remind doctors that
patients did have recourse to a second opinion and that their standards of treatment and
care would be under scrutiny.
Male GPs were seen as having little sympathy with male patients and participants felt
their doctors considered them ‘soft’ or ‘moaning’ when they attended with symptoms.
They were seen as having negative views about the men who consulted them, seeing
them as ‘time wasters’ who just wanted a sick note and only attended because:
you don’t want to go to work, you got up late stuff like that, so his backs up, you see when
he sees a fella ‘Yeah what do want’ : : : if you are really poorly it doesn’t connect that,
because he’s sick of you before you start.
David
Perhaps because of this many men preferred to see a female doctor:
I find women are so frank and open er : : : sympathetic I suppose really.
John
The difficult relationship that men often reported with their male GPs may also be
influenced by participants’ need to appear strong, independent and in control in front of
another man:
We have to have this image of being tough and macho and what have you and a lot of us
aren’t, : : : and we think I’m not going there with my willy if it doesn’t work I’m not letting
him know that my willy doesn’t work because willy’s are supposed to work for blokes : : : I
think yeah, I’ll keep that to myself it’s a bit : : :
Bill
BJHP 128—2/5/2007—ANISH—214661
Patterns of self-referral in men with symptoms of prostate disease
11
Bill is concerned to preserve his image of masculinity and virility in front of another man
even when this is a doctor.
In contrast with the many negative influences on men’s pattern of self-referral, one
factor that encouraged early referral was being able to engage with the system on an
equal footing. Many participants attempted to ‘pay’ for care by offering favours, presents
and services (in one case by offering to mend the doctors leaking shower) in exchange
for the doctor’s attention.
Another way in which participants were enabled to equalize their relationship in a
medical consultation was to choose private health care. Even if private care was not
used, its existence served to empower individuals in that it provided an alternative to
the GP’s care if they were unhappy so that they could:
Turn my back on what’s offered and say ‘Stick you, I’ll go somewhere else’.
Terry
In the NHS, payment for care is remote from the point of delivery and so patients may
not see it as a service that they have paid for through National Insurance contributions.
This may make them feel they are dependent on the charity of health care professionals
for any care that is provided.
Discussion
The overall aim of this study has been to provide an understanding of how men make
decisions about their health and particularly the factors that influence their decision to
seek professional advice.
This analysis showed how the need to live up to dominant images of masculinity had
a profound effect over all areas of these men’s lives. While participants overtly rejected
masculine behaviours, which they recognize as damaging health, they remained
unaware of how adherence to hegemonic ideals may be influencing their health on a
day-to-day basis. Men’s rejection of the effect of ‘macho’ behaviour on their health
behaviours has been noted in other studies (Robertson, 2003; Tudiver & Talbot, 1999)
and may be due to the linking of lifestyle choices and ill health in western societies. This
has given some illnesses a moral dimension (Lupton, 1994), as being less deserving of
sympathy and wasteful of scarce medical resources (Petersen, 1996). These men were
clearly aware that they are at risk of being labelled the ‘undeserving ill’ if their behaviour
is implicated in their health problems.
There appear to be strong social pressures on men to struggle on when ill and to
deny symptoms, particularly those that reflect negatively on their masculine image. As in
other studies these men appeared to see illness as being a sign of weakness (Gascoigne
et al., 1999) and cited this as a cause of delay in self-referral. The need to present a
masculine image also influenced their interactions with male GPs as consulting a male
doctor involved revealing oneself as failing to conform to masculine stereotypes to
another, healthy man. Although GPs may see men as preferring to consult a male GP
(Tudiver & Talbot, 1999), work by Henderson and Weisman (2001) indicates that men
are more likely to discuss sensitive topics with a female rather than male GP.
Intimate examinations may be seen as an even greater threat to the male image and
work by Howard (1996) suggests that these may have sexual associations for men, with
examinations by women doctors being seen as more ‘normal’. While digital rectal
examination is a simple and cheap test, it is only useful in detecting cancer of the
prostate when carried out by those who are skilled and practised in carrying it out
(Hoogendam, Buntinx, & de Vet, 1999; O’Dowd & Jewell, 1998; Richert-Boe, Humphrey,
BJHP 128—2/5/2007—ANISH—214661
12 Susan Hale et al.
Glass, & Weiss, 1998) and this analysis suggests that the prospect of a rectal examination
may dissuade many men from seeking help for prostate symptoms.
While symptoms could be hidden from others, there was no imperative for men to
seek professional help and it was only when symptoms involved episodes of
incontinence that men consulted their GP. This finding supports work by Van de Kar
et al. (1992) which showed that the perception of being able to cope with symptoms
may lead to delay in seeking professional help.
One factor that had a profound influence on men’s use of health services was the fear
that disease would be found on screening or confirmed on seeking help. Screening tests
can produce ‘fear of the silent illness lurking within’ (Lupton, 1994, p. 99) and reduce
individuals to a ‘potential sick role’ (Crawford, 1980, p. 379) until they are passed as fit
by testing. Fear of what might be found is known to be a reason for delay in attending for
health checks and seeking help (De Nooijer, 2001; Pill & Stott, 1988). However, men’s
perception of themselves as less susceptible to health threats may also discourage them
from attending screening services. Focusing on screening for the affirmation of health
rather than the detection of disease, together with the promotion of a version of
masculinity that has positive attitudes towards health care may encourage more men to
make use of screening services.
An acceptance of symptoms as being a normal feature of ageing has been recognized
as a factor leading to delay in help seeking (Ogden, 2003) and many of these men
dismissed symptoms as due to ‘wear and tear’ and did not seek help. Abnormal bleeding
has been identified in other studies as the most important symptom in encouraging
individuals to seek medical help (Månsson et al., 1993; Moser et al., 2005). However,
while haematuria can be indicative of some cancers, prostate cancer does not always
present in this way (Dawson & Whitfield, 1996; Schroder, 1995) and the absence of
this symptom may mean that men are more likely to ignore symptoms and delay
seeking help.
Although media information has been cited as an important source of health
information and about prostate disease in particular (Mercer et al., 1997), it seems to
have made little impression on these participants or encouraged them to seek medical
help. Media information about diseases specific to men often frame health threats as
threats to masculinity (Clarke & Robinson, 1999), which may have the effect of making
them reluctant to seek help. Media publicity about P Ca served to heighten anxiety and
placed men in an invidious position since many of these men associated help-seeking
behaviour with weakness. Delay is both consistent with ideals of masculinity and serves
to avoid the anxiety that most participants associated with consulting a doctor.
Many participants found written information a source of great anxiety and they often
had a number of erroneous beliefs about the meaning and seriousness of symptoms and
the type of treatments available. While this analysis suggests that increased access to
face-to-face, non-threatening information in a confidential setting may encourage men to
self-refer at an earlier stage, men may still avoid all sources of distressing information and
this may explain why knowing someone with P Ca did not encourage participants to
self-refer at an earlier stage.
Most participants only sought help because of persuasion from partners and this
enabled them to seek help while still preserving the image of a brave and stoical man
struggling on in the face of illness. Many studies have identified female partners as being
an important influence on self-referral (Gascoigne et al., 1999; Lyons & Willott, 1999;
Norcross et al., 1996; Tudiver & Talbot, 1999). Although married men delay seeking
medical help, they may still attend earlier than men who are unmarried. Early
BJHP 128—2/5/2007—ANISH—214661
Patterns of self-referral in men with symptoms of prostate disease
13
self-referral before metastases develop may explain why married men have higher
survival rates for many cancers (Kravdal, 2001).
Many of these men did talk to each other about symptoms, possibly because the
frequent need to urinate alerted others to the situation and this was often the subject of
much humour among groups of men with similar symptoms. Albrecht (1999) describes
this as ‘in-group’ humour which acts to redefine the problem, express group solidarity
and ease anxieties. Unfortunately, this tends to redefine the problem as ‘normal’ rather
than a problem and reduces the anxiety that may stimulate men to self-refer. The
accounts of men whose treatment had not been so successful also discouraged men
from seeking help. Other sufferers and patients seem to provide a particularly potent
source of information. Their advice assumes the status of a testimonial and studies have
shown that these are remembered better and are more persuasive than purely factual
information (Koballa, 1986). These men’s fear of prostate cancer combined with the
tendency of others to define the problem as a ‘natural’ part of ageing led participants to
delay self-referral.
Work by McEachreon, Salmoni, Pong, Garg, and Viverais-Dresler (2000) indicates
that men prefer informal health advice, whereas women prefer to consult a doctor for
assurance about their symptoms. This study suggests that some men may find it difficult
to approach male GPs with health problems that they feel reflects upon their
masculinity. Many of these participants held negative views about men who sought help
and often attributed similar views to male GPs. Maintaining control over their illness
emerged as important to these men. Being ‘in control’ is itself part of the dominant
image of masculinity where ‘real men’ are strong, emotionally resilient, healthy and in
control of both their bodies and their lives (Courtenay, 2000). For these men in their
interactions with health care, this control involved establishing their equality with male
doctors by offering favours or services or by seeking private care and paying for service.
Although this analysis has identified a number of factors that influenced men in
making the decision to seek medical help, these men represent a group who had sought
help. The views of those who despite symptoms still avoid seeking help remain unknown.
Studies involving men often treat these as homogenous groups (Goldscheier, 1990).
Attitudes can, however, change radically between different age cohorts (Connell, 1995;
Hoch, 1979). Participants in this study were brought up in a period when ideals of
masculinity were focused around hypermasculine images of men as warriors – healthy,
resilient and emotionally controlled. Memories of prewelfare state society may also have
led to this age group having more negative attitudes towards ‘being ill’. The responses of
these participants may then be very different from younger men who may have had very
different life experiences and expectations and see themselves as having a wider choice
of behaviours and the ability to resist cultural stereotypes (Goldscheir, 1990).
While this analysis highlighted men’s need to live up to masculine gender roles, the
results may have been influenced by the decision to explore men’s responses to prostate
problems, a condition that reflects strongly on men’s notions of masculinity. The
influence of gender roles on men’s behaviour may not have been so evident when
interviewing men with other health conditions such as coronary heart disease, asthma
or diabetes. However, all men’s health problems that cause limiting, long-standing illness
are likely to have an effect on both their ability to conform to masculine images and
sexual functioning and the use of prostate problems as a focus has merely thrown this
aspect of response to illness into sharp relief.
This study has explored men’s attitudes to health and illness, particularly those
towards prostate problems and identified a number of factors that influence men when
BJHP 128—2/5/2007—ANISH—214661
14 Susan Hale et al.
making the decision to seek medical help. It has demonstrated how the social pressures
to live up to traditional images of masculinity influence how men conceptualize health,
the health behaviours they adopt and how they behave when ill. Far from being
uncaring about their health, the threat of illness was a cause of extreme anxiety that men
often coped with by avoiding contact with health care.
Acknowledgements
The authors would like to thank two anonymous reviewers for their helpful and constructive
comments on an earlier draft of this paper.
References
Albrecht, G. (1999). Disability humour: What’s in a joke. Body and Society, 5, 67–75.
British Psychological Society (1995). Code of conduct. Psychologist, 8, 452–453.
Cameron, L., Leventhal, E. A., & Leventhal, H. (1993). Symptom representations and affect as
determinants of care seeking in a community-dwelling, adult sample population. Health
Psychology, 12, 171–179.
Campbell, S. M., & Roland, M. O. (1996). Why do people consult the doctor? Family Practice, 13,
75–83.
Chamberlain, K. (1999). Using grounded theory in health psychology. In M. Murray &
K. Chamberlain (Eds.), Qualitative health psychology. London: Sage.
Charaten, F. B. (1998). Prostate cancer screening reduces deaths. British Medical Journal, 316,
1625.
Clarke, J., & Robinson, J. (1999). Testicular cancer: Medicine and machismo in the media. Health,
3, 263–282.
Connell, R. W. (1995). Masculinities. Cambridge, UK: Polity Press.
Conrad, P. (1987). The experience of illness: Recent and new directions. Research in the
Sociology of Healthcare, 6, 1–31.
Courtenay, W. H. (2000). Constructions of masculinity and their influence on men’s well being:
A theory of gender and health. Social Science and medicine, 50, 1385–1401.
Crawford, R. (1980). Healthism and the medicalisation of everyday life. International Journal of
Health Services, 19, 365–388.
Crossley, M. L. (2000). Rethinking health psychology. Buckingham, UK: Open University Press.
Croyle, R. T., & Hunt, J. R. (1991). Coping with health threat: Social influence processes in
reactions to medical test results. Journal of Personality and Social Psychology, 60,
382–389.
Dawson, C., & Whitfield, H. (1996). ABC of urology. British Medical Journal, 312, 1032–1034.
Dearnaley, D. P. (1994). Current issues in cancer: Cancer of the prostate. British Medical Journal,
308, 780–784.
De Nooijer, J., Lechner, L., & De Vries, H. (2001). Help-seeking behaviour for cancer symptoms:
Perceptions of patients and general practitioners. Psycho-Oncology, 10, 469–478.
Department of Health (2001). Hospital inpatient statistics at www.doh.gov.uk/HPSSS/TBL
accessed 20th January 2004.
Garraway, W. M., Russell, E. B. A. W., Lee, R. J., Collins, G. N., Mckelvie, G. B., Hehir, M., Rogers, A.
C. N., & Simpson, R. J. (1993). Impact of previously unrecognised benign prostatic hyperplasia
on the daily activities of middle aged men. British Journal of General Practice, 43, 318–321.
Gascoigne, P., Mason, M. D., & Roberts, E. (1999). Factors affecting presentation and delay in
patients with testicular cancer: Results of a qualitative study. Psycho-Oncology, 8, 144–154.
Gijsbers van Wijk, C. M. T., Huisman, H., & Kolk, A. M. (1999). Gender differences in physical
symptoms and illness behaviour: A health diary study. Social Science and Medicine, 49,
1061–1074.
BJHP 128—2/5/2007—ANISH—214661
Patterns of self-referral in men with symptoms of prostate disease
15
Gijsbers van Wijk, C. M. T., & Kolk, A. M. (1997). Sex differences in physical symptoms: The
contribution of symptom perception theory. Social Science and Medicine, 45, 231–246.
Goldscheier, F. K. (1990). The ageing of the gender revolution: What do we know and what do we
need to know? Research on Ageing, 12, 531–545.
Henderson, J. T., & Weisman, C. S. (2001). Physician gender effects on preventative screening and
counselling: An analysis of patients health care experiences. Medical Care, 39, 1281–1292.
Hoch, P. (1979). White hero, black beast: Racism, sexism and the mask of masculinity. London:
Pluto Press.
Holroyd, G. (1997). Men’s health in perspective. In L. Jones & M. Sidell (Eds.), The challenge of
promoting health: Exploration and action. London: Open University Press.
Hoogendam, A., Buntinx, F., & de Vet, H. C. W. (1999). The diagnostic value of digital rectal
screening in primary care screening for prostate cancer: A meta-analysis. Family Practice, 16,
621–626.
Howard, W. (1996). Men’s attitudes to health checks and awareness of male specific cancers.
London: Health Education Authority.
Kapur, N., Hunt, I., Lunt, M., McBeth, J., Creed, F., & Macfarlane, G. (2004). Psychosocial and
illness related predictors of consultation rates in primary care – a cohort study. Psychological
Medicine, 34, 719–728.
Kirby, R., Kirby, M. G., & Farah, R. N. (2000). Men’s health. London: Isis Medical Media.
Koballa, T. R. (1986). Persuading teachers to re-examine the innovative elementary science
programs of yesterday: The effect of anecdotal versus data summary communications. Journal
of Research in Science Teaching, 23, 437–449.
Kolk, A. M. (1994). The menstrual cycle: A symptom perception approach. Nederlands Tijdschrift
voor de Psychologie, 49, 279–285.
Kravdal, O. (2001). The impact of marital status on cancer survival. Social Science and Medicine,
52, 357–368.
Lee, C., & Owens, R. G. (2002). The psychology of men’s health. Buckingham: Open University
Press.
Leventhal, H., Benyamini, Y., Brownlee, S., Diefenbach, M., Leventhal, E. A., Patrick-Miller, L., &
Robitaille, C. (1997). Illness representations: Theoretical foundations. In K. Petrie &
J. A. Wienmann (Eds.), Perceptions of health and illness (pp. 19–45). Amsterdam: Harwood
Academic Press.
Lupton, D. (1994). Medicine as culture: Illness, disease and the body in Western societies.
London: Sage.
Lyons, A. C., & Willott, S. (1999). From suet pudding to superhero: Representations of men’s
health for women. Health, 3, 283–302.
Macintyre, S. (1993). Gender differences in the perceptions of common cold symptoms. Social
Science and Medicine, 36, 15–20.
Macintyre, S., Ford, G., & Hunt, K. (1999). Do women ‘over report’ morbidity? Men’s and women’s
responses to structured prompting on a standard question on long standing illness. Social
Science and Medicine, 48, 89–98.
Månsson, Å., Anderson, H., & Colleen, S. (1993). Time lag to diagnosis of bladder cancer –
influence of psychosocial parameters and level of health care provision. Scandinavian
Journal of Urology and Nephrology, 27, 363–369.
McEachreon, S., Salmoni, A., Pong, R., Garg, R., & Viverais-Dresler, G. (2000). Anticipated choices
among self, informal and formal care by older Canadians. Journal of Health Psychology, 5,
457–472.
Mechanic, D. (1966). Response factors in illness: The study of illness behaviour. Social Psychiatry,
1, 11–20.
Mercer, S. L., Goel, V., Levy, I. G., Ashbury, F. D., Iverson, D. C., & Iscoe, N. A. (1997). Prostate
cancer screening in the midst of controversy: Canadian men’s knowledge, beliefs, utilization
and future intentions. Canadian Journal of Public Health, 88, 327–332.
BJHP 128—2/5/2007—ANISH—214661
16 Susan Hale et al.
Moore, S. M., Barling, N. R., & Hood, B. (1998). Predicting testicular and breast self examination:
A test of the theory of reasoned action. Behaviour Change, 15, 41–49.
Moser, D. K., McKinley, S., Dracup, K., & Chung, M. L. (2005). Gender differences in reasons
patients delay in seeking treatment for acute myocardial infarction symptoms. Patient
Education and Counseling, 56, 45–54.
Munley, G., McLoughlin, A., & Foster, J. (1999). Gender differences in health-check attendance and
intention in young adults: An application of the health belief model. Behaviour Change, 16,
237–245.
National Statistics (2001). Social focus on men. London: The Stationery Office.
Norcross, W. A., Ramirez, C., & Palinkas, L. A. (1996). The influence of women on the health careseeking behaviour of men. Journal of Family Practice, 43, 475–480.
O’Brian, M. (1990). The place of men in a gender sensitive therapy. In R. J. Perelberg & A. Miller
(Eds.), Gender and power in families (pp. 195–208). London: Tavistock.
O’Dowd, T., & Jewell, D. (1998). Men’s health. Oxford, UK: Oxford University Press.
Office for National Statistics (1996). Health in England. London: HMSO.
Office for National Statistics (1998). Key health statistics from general practice. London: HMSO.
Ogden, J. (2003). What do symptoms mean? British Medical Journal, 327, 409–410.
Osborn, M., & Smith, J. A. (1998). The personal experience of chronic benign lower back pain: An
interpretative phenomenological analysis. British Journal of Health Psychology, 3, 65–83.
Pattenden, J., Watt, I., Lewin, J. P., & Stanford, N. (2005). Decision making processes in people
with symptoms of acute myocardial infarction: Qualitative study. British Medical Journal,
324, 1006.
Petersen, A. (1996). The ‘healthy’ city, expertise, and the regulation of space. Health and Place, 2,
157–165.
Petersen, A. (1998). Unmasking the masculine: ‘Men’ and ‘identity’ in a sceptical age. London:
Sage.
Pill, R., & Stott, N. (1988). Invitation to attend a health check in general practice setting: The views
of a cohort of non-attenders. Journal of the Royal College of General Practitioners, 38, 57–60.
Prior, T., & Waxman, J. (2000). Localised prostate cancer: Can we do better? British Medical
Journal, 320, 9–70.
Ramirez, A. J., Westcombe, A. M., Burgess, C. C., & Sutton, S. (1999). Factors predicting delayed
presentation of symptomatic breast cancer: A systematic review. Lancet, 353, 1127–1132.
Richert-Boe, K. E., Humphrey, L. L., Glass, A. G., & Weiss, N. S. (1998). Screening digital rectal
examination and prostate cancer mortality: A case control study. Journal of Medical
Screening, 5, 99–103.
Robertson, S. (2003). Men managing health. Men’s Health Journal, 2, 111–113.
Schroder, F. (1995). Detection of prostate cancer. British Medical Journal, 310, 140–141.
Sheeran, P., & Abraham, C. (1995). The health belief model. In M. Conner & P. Norman (Eds.),
Predicting health behaviour: Research and practice with social cognition models.
Buckingham: Open University Press.
Simpson, R. J., Lee, R. J., Garraway, W. M., King, D., & McIntosh, I. (1994). Consultation patterns in
a community of men with benign prostatic hyperplasia. British Journal of General Practice,
44, 499–502.
Smith, J. A. (1995). Semi-structured interviewing and qualitative analysis. In J. A. Smith, R. Harré, &
L. Van Langenhove (Eds.), Rethinking methods in psychology. London: Sage.
Smith, J. A. (1996). Beyond the divide between cognition and discourse: Using interpretative
phenomenological analysis in health psychology. Psychology and Health, 11, 261–271.
Smith, J. A., Jarman, M., & Osborn, M. (1999). Doing interpretative phenomenological analysis.
In M. Murray & K. Chamberlain (Eds.), Qualitative health psychology. London: Sage.
Thorogood, M., Coulter, A., Jones, L., Yudkin, P., Muir, J., & Mant, D. (1993). Factors affecting
response to an invitation to attend general health check. Journal of Epidemiology and
Community Health, 47, 24–228.
BJHP 128—2/5/2007—ANISH—214661
Patterns of self-referral in men with symptoms of prostate disease
17
Tudiver, A., & Talbot, Y. (1999). Why don’t men seek help? Family physicians perspectives on helpseeking behaviour in men. Journal of Family Practice, 48, 47–52.
Van de Kar, A., Knottnerus, A., Meertens, R., Dubois, V., & Kok, G. (1992). Why do patients consult
the general practitioner? Determinants of their decision. British Journal of General Practice,
42, 313–316.
Walsh, J. C., Lynch, M., Murphy, A. W., & Daley, K. (2004). Factors influencing the decision to seek
treatment for symptoms of acute myocardial infarction: An evaluation of the self-regulatory
model of illness behaviour. Journal of Psychosomatic Research, 56, 67–73.
Watson, J. (2000). Male bodies: Health culture and identity. Buckingham: Open University Press.
Q2 Wyke, S., Hunt, K., & Ford, G. (1998). Gender differences in consulting a general practitioner for
symptoms of a minor illness. Social Science and Medicine, 46, 901–906.
Received 9 June 2005; revised version received 7 May 2006
BJHP 128—2/5/2007—ANISH—214661
18 Susan Hale et al.
Author Queries
JOB NUMBER: 128
JOURNAL: BJHP
Q1
Scheeran & Abraham, 1995 has been changed to Sheeran & Abraham, 1995 as
per the reference list. Please check
Q2
Reference Wyke et al., 1998 is provided in the list but not cited in the text.
Please supply citation details or delete the reference from the reference list.
Q3
Please check of the dash at the end of some displayed quotations is
appropriately styled.