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. 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