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Two Black Men With Prostate Cancer: A Narrative Approach

Posted on: Friday, 25 February 2005, 03:00 CST

Objectives. This paper demonstrates the value of a narrative approach for health psychology. It focuses on the lives of two Black men with prostate cancer, drawn from a larger study investigating the links between masculinities and prostate cancer.

Design. The study was a qualitative, interview-based study. Each participant was interviewed four times.

Methods and analysis. The men were asked to describe and discuss their prostate cancer experience, as well as their lives prior to illness. In order to gain a perspective on individual experiences of men with prostate cancer, we took a narrative approach to gathering and analysing data. Results are reported through two descriptive narratives.

Conclusions. The narratives of the men described in the paper show how the interaction of race with health and illness is neither predictable nor consistent at the individual level. Black men, like all men with prostate cancer, have diverse experiences and are influenced by a wide array of personal and societal factors. While the high risk of prostate cancer among Black men makes proactive interventions advisable, such interventions will be most effective if the heterogeneity of men's experiences are taken into account.

This paper is intended to accomplish two primary tasks: to reveal how prostate cancer affects the lives of individual Black men, and to show how a narrative approach can contribute to health psychology.

In North America, Black men have the highest incidence of prostate cancer and the highest mortality rates. American Blacks are 1.7 times as likely to be diagnosed with prostate cancer and 2 times more likely to die of the disease compared to Whites (Klabunde, Potosky, Harlan, & Kramer, 1998). In addition, Black men are more likely to have advanced stage and grade of prostate cancer at initial presentation (Klabunde et al., 1998).

At present, there is no clear explanation for the greater risk, and more aggressive quality, of prostate cancer for Black men. Of possible relevance are biological (Moul et al., 1995), economic (Ndubuisi, Kofie, Andoh, & Schwartz, 1995; Powell, Schwartz, & Hussain, 1995), nutritional (Clinton & Giovannucci, 1998), and sociocultural (Outlaw, Bourjolly, & Barg, 2000) factors. Although further clarification of these issues is needed, steps could arguably be taken now to address medical realities. Regular prostate cancer screening programmes could be implemented and a generally more proactive approach taken in assessing and treating Black men (Price, Colvin, & Smith, 1993).

Despite the apparent need for a greater focus on Black men and prostate cancer, it has not become a health priority in North America. Indeed, current US evidence suggests that Black men are less likely to be screened and less likely to receive appropriate and timely treatment for prostate cancer (Klabunde et al., 1998; Robinson, Ashley, & Haynes, 1996). Partly this can be understood as a function of general systemic problems, rooted in economic and discriminatory realities, whereby Black men are less likely to have access to high quality health care and to have health insurance coverage (Outlaw et al., 2000). But Black men are also less willing than White men, even when cost is not an obvious issue, to participate in medical programmes such as preventive screening or clinical trials (Gore, 1995; Underwood, 1994). This reluctance may relate to greater difficulties in finding time to participate (Swanson & Ward, 1995). It may also relate to the lower satisfaction reported by Black patients about interactions with doctors (Cooper- Patrick et al, 1999). Finally, there is a historically justified mistrust of the medical establishment within the Black community. Events such as the Tuskegee syphilis experiment, in which Black American men were intentionally left untreated for syphilis, have left a legacy of continuing suspicion. One study of accrual to clinical trials reported that some Black men were reluctant to participate because of fears of medical experimentation and distrust of the medical establishment (Robinson et al, 1996).

Given the salience of prostate cancer issues for Black men, it is surprising that the topic has received so little attention. The limited social science research conducted on prostate cancer to date includes broad epidemiological studies that attempt to identify factors possibly responsible for poor group outcomes, and studies that investigate strategies for convincing Black men to engage with various medical and screening programmes. Both approaches contribute to a conception of Black men as a homogeneous group. The risk accompanying these approaches is stereotyping, the construction of social representations that box individual Black men into a framework unlikely to do full justice to their experiences.

There is a long history of racist, reductionist representations of the Black male in mainstream North American society (Hunter & Davis, 1992), and these have arguably done little to encourage empathy with, or understanding of, the lives of individual men. Similarly, recent academic writings about men and masculinities focus primarily on the ways that Black men do and do not aspire to express and perform the qualities of hegemonic masculinity, as defined by the gender performance of heterosexual, well-educated Euro-American males of upper class economic status (Courtenay, 2000). This work does little to advance an appropriately complex understanding of Black men's actual experiences with challenges like prostate cancer. In this paper we intend to take a different approach, drawing on individual experiences to highlight challenges for Black men with prostate cancer.

This paper is based on a 2-year qualitative study about linkages between masculinities and prostate cancer. In order to gain a perspective on the experiences of Black men with prostate cancer, we took a narrative approach to our topic. This approach, while increasingly embraced by the other social sciences, has been slow to find a place in health psychology, with its roots in a biomedical model and reliance on quantitative methods (Radley, 1999). But traditional health psychology is poorly equipped to address the perspectives of ill people. Attempts to quantify components of experience cannot possibly capture the expressive quality of being ill, the complex, and pervasive 'world of illness' (Radley, 1993). While qualitative methods are better able to investigate such complexities, some approaches still fragment the worlds of those who are studied by abstracting pieces of discourse from their social and temporal context (Murray, 1999). A narrative approach, with its emphasis on preserving (not dismembering) the contexts in which stories are told, makes health psychology more relevant to the actual lives of ill people.

Narratives are the stories that people tell about their lives. Narrators render specific life events meaningful by linking them to other life events, and by providing temporal ordering of these events (Hyden, 1997). Narratives display the context for human activity - temporal, spatial, interpersonal and societal (Clandinin & Connelly, 2000). Because narratives are situated within a broader sociocultural context, they reveal social structures and processes (including those relevant to race and class), not just personal realities (Murray, 1999). Through stories, individuals actively construct identities, revise them, and try out alternative configurations of self (Bell, 1999). One of the strengths of the narrative approach is that it is rooted in how human beings typically understand and represent their lives. Arguably, the world must be interpreted in narrative form in order to make sense of the temporal nature of life (Murray, 1999).

A narrative approach has increasingly been used to understand illness experience (e.g. Bell, 1999; Ezzy, 2000; Frank, 1995; Good & DelVecchio Good, 1994; Murray & McMillan, 1988; Williams, 1984). Illness is a type of 'biographical disruption' (Bury, 1982), challenging individuals to re-imagine their life stories. Studying the narratives of ill people thus reveals how illness gets integrated into people's lives and how various social factors impinge upon the process.

In efforts to provide structure for the analysis of narratives, a number of theorists have sought to identify narrative 'types' (Barnard, 1995; Davies, 1997; Ezzy, 2000; Frank, 1995; Nussbaum, 1986). Two of the better-known systems will be described here. Frank, in his three-part typology, described a restitution narrative, wherein the teller minimizes the experience of illness and sees it as a temporary interruption that will be overcome. The return to pre-illness 'normalcy' is the focus. A second type outlined by Frank is the chaos narrative, where the ill person loses any sense of order, meaning or purpose and is unable to articulate a coherent path for dealing with illness experience. Finally, there is the quest narrative, in which illness becomes a challenge to be met. Ill people who tell quest narratives typically see themselves on a journey in which heroic acts will be necessary and where good can overcome evil.

Ezzy (2000) studied the limitations of preceding typologies, including Frank's, and proposed an alternative system to make sense of his data with HIV-infected men. He included a temporal dimension to his categories, highlighting how k\ey time is in people's framing of their lives. His first category, restitutive linear narratives, reflects the assumption that the future can be controlled through people's actions. Like Frank's restitution narratives, what is out of balance can be put back into balance; sick people will return to wellness. Chaotic linear narratives, on the other hand, anticipate a life that cannot be brought under control, and will result in despair and depression. But in the third type, polyphonic narratives, the emphasis is in the present, with the future portrayed as uncertain and ultimately unmanageable. These narratives tend to include spiritual experiences and tell about increased insights and deepened self-understanding. There is often a focus on mystery, surprise and creativity.

The approach we took with the men in our study encouraged the telling of stories. Each of the men provided us with an overall biographical account of their lives, as well as many smaller stories about illness experiences. Beyond analysing these stories, we have chosen to write into the text of the paper two brief narratives of individual men's illness experiences. By including the men's stories in this fashion, we intend to demonstrate (not just reflect upon) the value of temporal, contextual accounts.

Methods

Participants and setting

Black men referred to in this study were recruited in the Toronto (Canada) area, as part of a larger study. A prime concern of the investigators of the larger study was to interview men with differing social experiences vis--vis masculinity. A variety of strategies were employed in recruitment, including: targeted media advertising (newspaper for the Black community), announcements to a local prostate cancer support group, and personal contacts facilitated by study participants.

Men were considered eligible for the study if at least 1 year had passed since a confirmed diagnosis of prostate cancer and they could both read and speak English. Initial contact was made by telephone, and men were advised about the intent of the study and the types of questions that they might expect if they participated. This paper will limit its focus to two of the four Black men recruited for the study. We have written elsewhere about the experiences of White, heterosexual men (Gray, Fitch, Fergus, Mykhalovskiy, & Church, 2002). Future publications will address issues for the gay men in our sample.

Data collection procedures

Four in-depth, open-ended interviews were conducted with each participant. The target number of interviews for study participants was decided upon in the first instance after several pilot interviews revealed that the topics to be covered were best covered over four meetings. Gaps between meetings allowed the research team to review content and identify questions that might reveal missing or unclear information. One of the men chose to meet at his home; the other came to the office of the researcher. A White female in her 30s (K.F.) conducted interviews with both participants described in this paper.

At the initial meeting, men were asked to review and sign a consent form. Spacing between interviews was negotiated according to the needs and preferences of participants, while allowing sufficient time for the research team to review and discuss interview transcripts between meetings.

The series of interviews proceeded in three general phases. In the first phase, the men were asked to describe and discuss their prostate cancer experience. Research participants were asked about their experiences of being diagnosed and receiving treatment, about their relationships with physicians and other health care providers, and about how their spouses, partners, and family members were involved with the experience. In the second phase, men were asked to describe and discuss their life prior to prostate cancer, from early childhood through until their diagnosis, including early relationships with parents and family members, schooling experiences, romantic and sexual relationships, and work experiences. The conversation focused especially on aspects of the men's life accounts most important to them. The final phase involved asking the men to reflect on some of the links between their pre- cancer lives and their post-cancer lives. Interviews were audiotaped and transcribed verbatim. Field notes were kept to assist in the interpretation of interview data (Crabtree & Miller, 1991; Morse & Field, 1995).

Dato analysis and reporting

For the analysis of narratives, all members of the research team read transcripts for each study participant and then met to (a) discuss impressions of narrative structure and content and (b) negotiate agreements about core aspects of the narratives. In reading the transcripts, and thinking about core aspects, we focused especially on details whereby individual lives were shown to connect to social and structural features (e.g. workplace, family, health care system). We were also alert to ways in which identities were being actively constructed in the context of shifting life circumstances and issues (Bell, 1999; Riessman, 1993). In the process of identifying and reporting on core aspects of the men's narratives, we made decisions to leave out other aspects. Our streamlined approach to narrative display is not meant to suggest that study participants are entirely consistent or straightforward. Indeed, we readily acknowledge that study participants are complex and fractured, and embody multiple perspectives simultaneously (Blumenthal, 1999).

Results

Results are reported through two descriptive narratives. In order to honour our confidentiality agreements with study participants, identifying details have been altered - including names of people and places, dates, and ages.

John

Background

John is in his mid 70s and retired. He grew up in a poor family in a city on Canada's east coast. His mother worked as a domestic in rich people's homes; his father was a sailor and away much of the time. Within the family, John was considered the most sensitive. From an early age he was drawn to literature, the arts and the humanities. In school, 'the library became my temple' and he resisted his teachers' efforts to push him into a good practical field (for a Black student) like woodworking. Later he served in the army, although he considered resisting the draft. Following the second World War, John married a woman from the Caribbean and they had several children together. He worked on the railroad as a porter, but quit because he grew increasingly enraged about the racism he encountered. Over his remaining work years, he did manual labour during the day and took evening courses in philosophy, history, and literature. He became deeply involved in a spiritual tradition, wrote articles, gave public talks, and became a mentor to younger Black people following a spiritual path.

Illness story

John had been urinating more and more frequently. He also had trouble starting urination. 'You're standing there and is it going to come or . . . I guess it isn't . . . so you start back to bed and whoops, you have to back to the bowl again.' He went to his family doctor regularly, 'at the behest of my wee spouse, my manager,' and ended up having the prostate specific antigen (PSA) blood test, which led eventually to his being diagnosed with prostate cancer. He was not all that shocked by the news and thinks this is because of other close brushes with death in his life. Initially, his main concern was about avoiding disability and retaining his dignity. But after gathering information, and discussing it with his doctor, he decided it made sense to have treatment. He believed that mental power would be just as important as medical treatment and resolved to approach things positively. He chose radiation therapy as his primary treatment because it seemed more likely that it would allow him to remain sexually potent - despite the difficult (for him) reality that his wife no longer welcomed sexual activity ('the wee spouse closed the factory'). John travelled to and from radiation treatment with volunteer drivers and enjoyed the companionship. Although at first he had 'all this male shyness' about exposing his body during treatment, he soon realised that 'they're no more than mechanics working on an old Model T.' John took a variety of alternative medicines, believing that if he believed that they would help, then they would.

In the period following treatment, John's wife supported him in practical ways, cooking and caring for him, helping him deal with temporary incontinence. His post-treatment recovery did not include the return of sexual potency. While John thought he should be able to adjust to the 'inevitable lack of potency' for men as they grow older, he nevertheless felt like he had 'lost a friend'. He compared it to the experience of a 'barren woman' having to deal with her longing for a child. He talked about how important his various spiritual and intellectual commitments were for filling the void.

John regularly attended a local prostate cancer support group. While he got helpful information, the main benefit was the sense that others shared his battle to overcome feeling 'like a discard' ('I realize now that I'm not the only catfish in the sea'). Despite his openness in the support group situation, John only told two men friends about his diagnosis. He avoided going into detail, casually mentioning it in the same way he might say 'it's going to rain'. He thought the topic of prostate cancer was awkward for his friends and thus for him, and that everyone was happier if he changed the subject as quickly as possible.

Story-telling style

John spoke in an evocative, larger-than-life manner, about his philosophical and spiritual views and his experiences with racism. He adopted a lively tutoring approach with the interviewer, likely reminiscent of his relationships with young Black people whom he \mentored. Although he was willing to talk about his prostate cancer experiences, he was clearly less enthusiastic about that topic, and often deflected the focus away from his personal experiences and back to more abstract topics.

Paul

Background

Paul is a 62-year-old man, born in a small village in a Caribbean country under British rule. His parents were strict disciplinarians and Paul and his nine siblings learned to be obedient and never to answer back. Paul was influenced by British legacies such as etiquette, proper grammar and attire, rigorous schooling, and corporal punishment. His family had a high status in the community, as his father became the first Black person to hold down an official position. As a result, the children in his family 'weren't allowed to go down in the village and play with the other kids, because it was something rigid, between the haves and the have-not's'.

Paul found decent work when he left school. He met his future wife, a woman from the city with higher status - lighter skin, more refined manners, and broader experience with the outside world. They began the long and careful courting process usual for their time and place. He immigrated to Canada and she joined him several years later. They married and had five children. Paul found factory work and stayed at the same job for many years. He became a leader in the Canadian Caribbean community, working to create more opportunities for Black people. The clash between the values he learned growing up and the permissiveness of North American society resulted in conflict with his children. Despite his contention that the 'British did a number on us, they really did' (in terms of hierarchical systems based class and race), he mourns the loss of other aspects of the colonial way of life.

The illness story

Several years prior to his diagnosis, Paul became aware of the high incidence of prostate cancer among Black men, and initiated educational programmes in the Canadian Caribbean community. So he was well aware of the issues when he found that his PSA level was gradually going up. Although his doctor argued there was nothing to be concerned about, Paul requested an additional, 'more accurate PSA test' and then had a biopsy. When the doctor eventually diagnosed Paul and discussed treatment options, he strongly recommended surgery and Paul 'took the first available date and did it'. Paul's surgeon did not discuss the possibilities of impotence or incontinence prior to the surgery, although Paul was aware of them from his reading. Paul felt this silence contributed to his readiness for the procedure, as he was not scared or preoccupied with things that could go wrong. He was pleased with the results of the surgery. Ι never had any incontinence, and I have a major portion of my erection back.' He put the success of the surgery down to 'my will-power and the amount of support I had with people praying for me, and the skill of my doctor'. He was amazed and pleased that when he woke up after surgery there was a Black nurse sitting by his bedside, and interpreted this as a sign of a caring system alert to culturally based needs. A year later, by the time of our final interview, Paul's PSA level had begun to slowly rise again and he was uncertain if he might be facing a recurrence and further treatment.

Beyond his initial insistence with his doctor that he be fully investigated, Paul continued to be proactive about his health. He went more often for PSA tests than his doctor recommended. Paul reassured his doctor that this self-advocacy was a good thing. 'I told him it has nothing to do with lack of confidence in him ... he has hundreds of patients to look after and doesn't have time to spend worrying about me. But I have that time and so I will look after myself and save him the worry.' He advocated with other men to keep records of PSA results and monitor changes over time. Paul insisted on more than the usual doctor-patent communication. 'You're not going to sit there and tell me about my prostate and that's all we talk about. No, we talk about other things too.' He invited his surgeon to his birthday celebration.

Paul's prostate cancer quickly became public knowledge in the Caribbean Community and he subsequently spoke with many men who had prostate cancer. Doctors had told him that Black men were secretive and reluctant to accept treatment. Paul also found this, talking with men who said things like, 'I don't want to have surgery because I lose my powers of erection and I have a lot of women out there.' Paul despaired about this 'macho attitude'. He talked back, 'God gives you an opportunity -with early detection to fix it and you don't die. You might give up some of your erection, but you will live forever.' In his workplace, Paul's prostate cancer earned him special recognition. Several managers from around North America contacted him with advice and support related to their own prostate cancer experiences. And Paul was offered opportunities to participate in the development of new health promotion programmes within the company.

When he was first concerned about possible prostate problems, Paul did not discuss it with his wife, 'because I didn't want to alarm her'. Although 'she has been extremely supportive' since the diagnosis, he has not felt able to share intimate thoughts. This is part of a long-standing 'lack of camaraderie' that Paul thinks is common in Caribbean marriages. Prior to surgery, his wife reassured him about his possible loss of sexuality and said it would not matter too much to her. Since surgery they have continued to have sex, but Paul has struggled in dealing with partial and uncertain erections. 'There are things that come into your mind now that prevent you from enjoying sex.' Paul thinks it is too much to expect men to discuss sexual issues with their wives and to initiate encounters. Urologists should give wives explanations and prescribe initiatory activity. 'He should have called her into the office and said, these are your new responsibilities, stick to them and it would help, and these are the reasons why it would help, and be beneficial in the end.'

Story-telling style

Paul came carefully groomed to interviews, and was extremely polite towards the interviewer. He was interested in determining her professional status and invited her to come to speak to one of the organizations he leads. He spoke in a matter-of-fact, educative manner and was seemingly unguarded in describing his personal experiences with prostate cancer.

Discussion

The approach we have taken, with an in-depth focus on the stories of two men, does not allow for broad generalizations about the experiences of Black men with prostate cancer. Indeed, part of the reason for focusing on individual narratives was to demonstrate the ways in which individual men uniquely negotiate their illness experiences (and lives) in relation to cultural expectations, hegemonic performances of masculinity, and racial stereotypes. It should be noted, however, that the two men described above, together with all the other men in this study, were more articulate and open about their experiences than most men with prostate cancer. Willingness to participate in a series of interviews about intimate issues reflects personal qualities that are somewhat rare among aging men.

The characteristics of the interviewer, a White woman in her 30s, undoubtedly shaped the style and content of the men's narratives. In both cases, they took an educational tack, adopting a paternal role for a younger person who they seemed to like, and who they wanted to understand their experiences of illness and race/culture.

The narratives provided by the men in this study do not map onto theories of narrative types in a straightforward manner. While both men could be perceived to be on 'quests' (John with his spiritual work and Paul with his community activism related to prostate cancer), they were engaged with these activities prior to being diagnosed with cancer. Thus, Frank's (1995) 'quest narrative' does not fully apply. The men were looking to return from the disruption of illness to take up their previously undertaken quests; their narratives are less heroic than restitutive. A similar point can be made in consideration of Ezzy's polyphonic narrative, with its focus on present experience and spiritual insight, for understanding John's narrative. Although John clearly embraced spiritual values and ideas that are consistent with a polyphonic narrative, he did not reflect on his illness experience from this perspective. There were no illness epiphanies in his story; no creative surprises arising from the grim realities of cancer. John's concern was more with getting the illness out of the way in order to re-focus on spiritual concerns. So while there are elements of a polyphonic narrative, a linear restitutive narrative is probably more consistent with our interview data.

It is interesting to reflect on the difficulty of fitting the narratives of the men in this study into theoretical typologies. Once again, individual experience refuses to be ordered in entirely predictable ways. While typologies clearly play a useful analytic role, they also serve to simplify and potentially distort. Is it possible that such distortions are more likely to occur when interpreting narratives of individuals from non-dominant cultural groups?

In considering just these two stories, it is immediately apparent how any presumption of commonality among North American Black men with prostate cancer is unwarranted. Although John and Paul had many similar experiences in growing up (e.g. racial and economic discrimination), the shape of those experiences was very different in an eastern Canadian province than in a Caribbean country under colonial rule.

In contrast to many adult males, Paul and John were both in the habit of attending regular medical check-ups and had already \established good relationships with their doctors prior to prostate cancer diagnosis. After diagnosis, they were able to get from their doctors the information that they felt they needed to make appropriate decisions. There were no suggestions from either man of perceived discrimination on the basis of race. Interestingly, Paul and John's positive perspective on the Canadian health care system was shared by the other two Black men in this study. This finding may reflect a self-selection process at work in our study.

Paul appreciated the straightforward approach his urologist took with him, appreciated being told what to do instead of being given options, and liked not being bothered with details about possible consequences of surgery. Paul entirely accepted the urologist's position - emphasizing the value of early detection followed by aggressive, potentially curative treatment. In applying these principles to himself, he was adopting the most advocated biomedical perspective in North America. Alternative perspectives, that might place quality of life over quantity, or consider lifestyle issues (e.g. sexual potency) as valid reference points for treatment decisions, were not acceptable to Paul. Although Paul was influenced by his urologist in regard to the value of early detection and treatment, he also read widely. He spoke articulately about medical issues, describing complicated procedures in great detail during our interviews. In his efforts to convince other Black men of the need to be proactive in assessing and attending to prostate-related issues, he became a spokesperson for the dominant version of biomedical ideology.

Paul's alignment with his doctors did not prevent him from taking independent action to ensure his health. He went for PSA tests more often than his doctor recommended. He advised other men to keep their own records about PSA levels, and not to trust their doctors to take care of the monitoring. But in undertaking these actions, Paul was very careful not to directly undermine the doctor's authority. Indeed, he cast himself as the helper, doing what he could to ease the burden on the overextended doctor. If anything, he wanted his doctor to assert more authority rather than less. It should be the doctor's responsibility, not his own (or his wife's), to prescribe proper sexual behaviour for wives.

While investing considerable authority in his doctor, Paul was nevertheless insistent on an egalitarian social relationship. He would not tolerate a purely medical discourse in which the doctor clearly held the higher position. They talked of other matters, and Paul made his own prominence in different social circles transparent. It was as if he could participate in the hierarchy of medical knowledge as long as it was clear that he was, in essence, a peer. While there is danger in reading too much into Paul's way of relating to his doctors, it is hard not to see parallels with his descriptions of the colonial society in which he was raised. Under British rule, hierarchy was a fact of life, intricately fashioned and maintained. Paul learned to respect his 'superiors' and to also act in ways that made him superior to others. Yet while living (and in some ways benefiting from) that reality, he also saw how it created unhealthy racial and class divisions in his country and in himself. His life before moving to Canada thus involved simultaneous acceptance and disputing of social authority - resulting in complicated fluctuations between displays of subservience, superiority, and egalitarianism. Despite the relatively less rigid hierarchies in Canadian society, situations that are nevertheless clearly hierarchical - such as doctor - patient interactions - may still provoke a complicated mix of responses similar to what Paul enacted as a boy.

In contrast to Paul, John placed little emphasis on his relationship to his doctor and was less committed to the tenets of biomedicine. In describing why he chose radiation treatment over surgery, John discussed how he was more concerned about disability, dignity and the quality of his life than he was about dying. He felt no inhibition about pursuing aids to health outside of the mainstream. He drank tea made from tree bark and consumed mounds of vitamins. When he talked about the people who were important to his health care experience, he focused not on doctors but on the people he had daily contact with. These included the volunteer driver who was so compassionate, the radiation technicians who helped him overcome his nervousness, and the men at the support group who shared information and concerns.

Both Paul and John were employed for many years in blue collar jobs. Neither had attempted to advance within their organizations, although Paul had achieved some workplace status through his activities to improve conditions for minority group employees. His diagnosis with prostate cancer further enhanced this status, and provided him with direct access to upper management. But the workplace still remained for him a secondary site for achievement. Primary for Paul, and also for John, was involvement with community organizations. Both men communicated a strong sense of pride about their contributions, and both were intensely engaged in volunteer work. This changed little with prostate cancer, except perhaps to further intensify it. John spoke about how the loss of sexuality made his various philosophical and writing projects all the more necessary to sustain him. Paul began to express his long-standing passion for supporting his community by focusing specifically on prostate cancer issues.

The intensity with which both Paul and John, along with the other two Black men in the study, continued to focus on achievement within their communities was notable in comparison to other men - many of whom were curtailing activities and deliberately taking it easy since their cancer diagnosis. Of relevance to this observation may be reports from a previous survey study. Black men were shown to continue to strongly endorse traditional norms of masculinity as they grew older, including a focus on achievement and status, while White men were more likely to shift over time in the direction of non-traditional aspects (Harris, Torres, & Allender, 1994). The authors speculated that such a continued focus on achievement among older Black men was linked to social and structural barriers that had restricted their ambitions throughout their lives, making a lasting sense of achievement harder to secure. It may also be relevant to note that both Paul and John were well educated - Paul through private school training and John through evening university classes and self-instruction. Given their history of pursuing learning, they may differ in their achievement motivation from other men with the same socio-economic background.

The loss of erectile capacity proved to be a difficult matter for John. Despite the fact that he and his wife had not been sexually active for some years, he had hoped that things might yet change. Prostate cancer ended his hope and he could see no realistic basis for experimenting with the various technological approaches that might help with erections. Although he was critical of other men's inability to come to grips with diminishing sexual functioning, he too had difficulty sustaining a more philosophical perspective on the matter.

Paul was highly critical of most Caribbean Black men, characterizing them as overly preoccupied with sexual potency and the pursuit of women. While he had an analysis for why men behaved this way - contextualizing sexual obsession within a disadvantaged social framework - he was nevertheless unsympathetic. Directly and indirectly, he expressed the wish that Black men be more like White men in their relationships with women, and by this he intimated a greater focus on companionship and lessened focus on sexual conquest. Paul mobilized these beliefs in relation to prostate cancer, becoming determined to get other men to behave in a more reasonable manner and put their health ahead of their sexual needs. With all of this, Paul seemed to be tacitly agreeing with a historical representation of Black men as sexually powerful and as having few constraints on sexual expression (Turner, 1977) - while at the same time avoiding applying such judgment to himself. Again, it is tempting to understand Paul's perspective as substantively influenced by his early immersion in a colonial society that inscribed Black men in such derogatory ways.

Paul had his own concerns about sexual functioning, related to the many uncertainties of partial erections and the struggles he had in negotiating this territory with his wife. He spoke articulately about how implicit expectations for men to be leaders in their marriages could lead to relational dysfunction when they were rendered vulnerable by illness. He looked to his wife to extend herself beyond traditional roles and become more active sexually, just as he had extended himself to take on 'womanly' household chores.

Paul's experiences with partial erections highlight an overlooked aspect of men's coping with prostate cancer treatment. Previous studies have tended to report sexual functioning consequences of treatment in terms of men either remaining potent or becoming totally impotent. While this gives one perspective on the seriousness of the issue, it tends to obscure the experiences of men who retain some erectile capacity. It is misleading to assume that these more fortunate men have regained their former level of functioning, or to assume that their post-surgical sexual relations are unproblematic. In contrast, men with partial erectile function typically struggle to find ways to deal with their reduced and uncertain capacity, and this changed situation is often very stressful for couples. The focus in the literature on total impotence thus contributes to a minimization of t\he overall seriousness of sexual issues for men with prostate cancer.

As noted above, Paul often described his relationships to other men in terms of status. He was concerned to improve the plight of Black men, and expressed respect for individual (White) managers and physicians. But alongside this hierarchical orientation was a sense of community with other men, a type of bonding that he found hard to imagine with women. John also showed a divided attitude towards other men. He was extremely pleased with his participation at the prostate cancer support group, and saw it as evidence of the capacities of men to overcome divisiveness and hatred linked to race, religion, and so forth. He also had close relationships with men who respected his spiritual work. Yet he chose to reveal little about his prostate cancer to men outside of the support group, and he spoke with rage about various racial inequities he saw enacted by Canadian men, past and present. When discussing his daughter's teenage dating, John described men very much as the sexual beasts suggested by Paul's perspective. Both men, then, seemed highly ambivalent about the place of other men in their negotiation of prostate cancer and more broadly in their lives, both cherishing relationships and mistrusting motivations.

Conclusion

The narratives of the men described in the paper show how the interaction of race with health and illness is neither predictable nor consistent at the individual level. Black men, like all men with prostate cancer, have diverse experiences and are influenced by a wide array of personal and societal factors. While the high risk of prostate cancer among Black men makes proactive interventions advisable, such interventions will be most effective if the heterogeneity of men's experiences are taken into account.

A narrative approach to studying illness allows a more intimate and complex understanding of the experiences of ill people than more traditional health psychology approaches have realized. If the perspective of ill people is to be taken seriously, then health psychology researchers will benefit from attending more to the stories that people tell, and the full context of their illness experience.

References

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Received 17 February 2003; revised version received 10 October 2003

Ross E. Gray*, Karen D. Fergus and Margaret I. Fitch

Psychosocial & Behavioural Research Unit, Toronto Sunn/brook Regional Cancer Centre, Toronto, Canada

* Correspondence should be addressed to Dr Ross Gray, Psychosodal & Behavioural Research Unit, Toronto Sunnybrook Regional Cancer Centre, 790 Bay Street, Suite 950, Toronto, Ontario, Canada, MSC IN8 (e-mail: ross.groy@sw.co).

Copyright British Psychological Society Feb 2005

Source: British Journal of Health Psychology

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