Exploring Perceptions and Meanings of Prostate Cancer Screening of Unscreened Men

by

Michelle Chisholm

Submitted in partial fulfillment of the requirements for the degree of Master of Nursing

at

Dalhousie University Halifax, Nova Scotia March 2010

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Abstract vii

Acknowledgements viii

Chapter I: Introduction 1

Risk Factors 1

Screening 2

Screening Benefits and Disadvantages 3

Screening Controversy 3

Screening Recommendations 5

Purpose of the Study 9

Significance of the Study 10

Chapter II: Review of Literature 12

Incidence and Mortality Rates 12

Frequency of Screening 14

Value of Screening 15

Barriers to Screening 17

Enablers of Screening 20

African Americans 21

Australians 23

Gender, Race, and Masculinity 25

Summary of Literature Review 29

Chapter III: Methodology and Methods 32

Phenomenology 32

iv Historical Overview and Elements of Phenomenology 33

Hermeneutic Phenomenological Research 38

Phenomenology in Nursing Research 40

Methods 42

Sample and Inclusion Criteria 43

Sampling 44

Recruitment .45

Data Collection 46

Analysis 49

Ethical Considerations 51

Respect for Persons 51

Beneficence 52

Justice 52

Trustworthiness 53

Credibility 53

Transferability 54

Dependability 55

Confirmability 55

Locating Myself in the Research 56

Chapter IV: Presentation and Discussion of Themes 58

A Silent Topic 59

Being A Man 63

Macho 64

v Not a Woman 71

The Dreaded Finger. 75

Lacking Knowledge 82

Screening 82

Prevention 89

Focusing on Symptoms 91

Chapter V: Conclusion 98

Implications of the Research 100

Implications for Practice 100

Implications for Education 103

Implications for Policy 104

Implications for Research 105

Study Strengths 106

Study Limitations 107

Final Reflections 108

References 110

Appendices 126

Appendix A - Recruitment Advertisement 126

Appendix B - E-Mail and Telephone Recruitment Script 127

Appendix C - Informed Consent Form 130

Appendix D - Background Data, Demographics, and Interview Guide 137

vi Abstract

Nova Scotia has the third highest rate of deaths from prostate cancer in Canada (Capital District Health Authority, 2004). Screening can identify cancer early before symptoms appear and reduce men's risk of being diagnosed with advanced prostate cancer. Despite this screening guidelines remain controversial. There is a paucity of research on what screening means for unscreened asymptomatic men. This hermeneutic phenomenological study explored men's perceptions and meanings of screening for prostate cancer. Three major themes were identified: A Silent Topic, Being a Man, and Lacking Knowledge. These themes revealed the silence surrounding prostate cancer and screening, men's reluctance to discuss and participate in prostate cancer screening, issues of masculinity, and men's lack of knowledge and awareness of prostate cancer and screening. This study has advanced understanding of the perceptions and meanings of prostate cancer screening for the men involved and the importance of care providers' conversations with men about screening.

vii Acknowledgements

I would like to take this opportunity to acknowledge and express my sincere gratitude to the individuals who inspired, encouraged, advised, guided, and supported me throughout the course of my thesis. A special thank you to Dr. Marilyn Macdonald and

Dr. Barbara Downe-Walmboldt, my co-supervisors who always facilitated my understanding, answered my questions, and guided me in this journey even in difficult times. Your knowledge, support, and encouragement will never be forgotten. To Dr. Joan

Evans and Professor Marlene Mercer, members of my thesis committee, and Joan

Hamilton, my external reviewer, thank-you for your expertise and valued input. A very special thank-you to all the men who participated in my research. Finally, I wish to acknowledge my parents, Maurice and Evangeline Chisholm, and partner, Mark Lamers for their unconditional love, patience, kindness, encouragement, and support throughout the program.

viii Chapter I

Introduction

Prostate cancer is currently the most commonly diagnosed cancer among the

American and Canadian adult male population, and is third after lung cancer and colorectal cancer in the cause of cancer associated deaths in Canada (Canadian Cancer

Society/National Cancer Institute of Canada, 2005; Canadian Cancer Society's Steering

Committee, 2009; National Cancer Institute of Canada, 2006). Prostate cancer is second to lung cancer in the cause of death in the United States (American Cancer Society, 2007;

American Urological Association Foundation, 2009; Centers for Disease Control &

Prevention, 2009; U. S. Cancer Statistics Working Group, 2006). One in 7.4 Canadian men will be diagnosed with prostate cancer during his lifetime and one in 27 will die from the disease (Canadian Cancer Society's Steering Committee). This chapter will discuss the risk factors associated with prostate cancer, screening interventions, potential benefits and disadvantages to screening, the controversy surrounding screening, and screening recommendations. It will conclude with an explanation of the purpose and significance of the research.

Risk Factors

There is no known single cause of prostate cancer, but there are some factors that increase the risk of developing it such as age (particularly being 65 years of age and older), family history, and African ancestry (American Cancer Society, 2009; Canadian

Cancer Society, 2004; Centers for Disease Control & Prevention, 2009; National Cancer

Institute, 2009). Prostate cancer is more common in some racial groups than in others, but

1 the reasons for this remain unclear (American Cancer Society; Centers for Disease

Control & Prevention).

African Americans are at least 60% more likely to develop prostate cancer than

Caucasians (Sellers & Ross, 2003). Reasons for the increased prostate cancer incidence and mortality among African Americans are poorly understood and continue to be an area of intense research (Cookson, 2001), but genetics, race, inequities in health care treatment, difficulty accessing services, and lack of knowledge may have an impact.

Screening

Prostate cancer screening involves two preliminary screening interventions: the digital rectal examination (DRE) and the prostate specific antigen (PSA) test. The DRE involves a rectal examination to palpate the back portion of the prostate for size and irregularity. The DRE is the most common way to screen for prostate cancer (Canadian

Cancer Society, 2008a). A suspicious DRE suggests the need for further testing (a PSA test). The PSA is a blood test to measure serum protein produced by the prostate gland.

The higher the PSA level, the more likely the man will have prostate cancer. The PSA test may be better at identifying abnormalities in the prostate than the DRE (Canadian

Cancer Society). The best means of detecting prostate cancer includes the use of both the serum PSA level and the DRE (Cookson, 2001; Karakiewicz & Aprikian, 1998). Both the

PSA test and the DRE are usually performed at the same time because the PSA test is better at detecting when small cancers exist while the DRE can sometimes detect cancers despite having normal PSA levels (Centers for Disease Control & Prevention, 2009). In the event that there is an abnormal DRE and/or a high PSA result, more investigation should be conducted to help determine if it is due to prostate cancer or another prostate

2 condition. These tests include biopsies and/or imaging studies (i.e., x-rays, ultrasounds, computed tomography or CT scans, and magnetic resonance imaging or MRIs.

Screening Benefits and Disadvantages

Prostate cancer screening (PSA testing and the DRE) is relatively inexpensive and quick and easy to perform. Potential benefits of screening include early diagnosis and treatment, reduced risk of being diagnosed with advanced prostate cancer, longevity, and reduced morbidity and mortality. The potential disadvantages or harms include fear, worry, anxiety, embarrassment, discomfort, false positives and false negatives, detection of small benign cancers that will not advance, and being diagnosed with prostate cancer.

Other potential disadvantages or harms include the need to undergo further diagnostic investigations such as biopsies, imaging studies, and invasive treatments (for example surgery, radiation). The latter may have subsequent unwanted side effects such as impotence and/or incontinence which compromise masculinity (Chappie & Ziebland,

2002; Evans et al., 2005).

Screening Controversy

The value of the PSA test has been controversial over the years because it is not specific to prostate cancer. Elevated levels may be the result of the following: benign enlargement of the prostate (benign prostatic hyperplasia), prostatitis (American

Urological Association Foundation, 2009; Canadian Cancer Society, 2008a; Cookson,

2001), age (Canadian Cancer Society; Cookson), procedures such as a prostate biopsy

(Canadian Cancer Society; Cookson), cystoscopy, and foley catheter insertion; and urinary retention, vigorous prostate massage, ejaculation (Cookson); and urinary tract infection (Canadian Cancer Society). A recent Canadian study has provided evidence that

3 the controversial PSA test could save lives. Kopec et al. (2005) determined that PSA screening of case-controlled asymptomatic men was associated with a significantly reduced risk of metastatic prostate cancer. Screening men even once for prostate cancer may reduce the risk of developing advanced prostate cancer by 35 percent according to the results of the study. More recent findings in a European study by Schroder et al.

(2009) have shown that PSA-based screening reduced the rate of death from prostate cancer by 20 percent.

The increasing incidence of prostate cancer may be due to the growing numbers of men undergoing screening tests for the disease as the population ages. According to the Canadian Cancer Society/National Cancer Institute of Canada (2005), "after years of steady increases, incidence rates of prostate cancer rose particularly sharply from 1989 to

1993. By contrast, mortality rates rose much more slowly from 1978 and started to decline in the mid 1990s" (p. 31). According to the Canadian Cancer Society's Steering

Committee (2009), two peaks in incidence occurred in 1993 and 2001, each followed with a decline. These peaks are congruent with two waves of increased PSA screening activity. The first decline was followed by the return to the previous more gradual increase, but the second decline is too recent to identify whether the increasing trend will return (Canadian Cancer Society's Steering Committee). "Although some of the long- term and apparently ongoing increase in incidence may be due to more gradual changes in early detection, changes in risk or protective factors might also be partly responsible"

(Canadian Cancer Society's Steering Committee, p. 31). While, age, family history, and ethnicity (African ancestry) are the recognized risk factors for prostate cancer, research is ongoing into other potential risk factors including: dietary factors; sexual factors,

4 including sexually transmitted infections; occupational exposures; and hormonal factors

(Public Health Agency of Canada, 2003). According to Cookson (2001), Canadian death rates have declined since 1991. Cookson postulates that the decline in death rates from prostate cancer in North America is the result of a combination of factors: early detection through PSA-based screening, improved diagnostics through ultrasound-guided needle biopsies, and more effective treatment such as radical prostatectomy for localized disease. Most recent statistics demonstrate that in contrast to incidence, mortality declined significantly by 2.9% per year between 1995 and 2004 which is likely suggestive of improved treatment (Canadian Cancer Society's Steering Committee) for prostate cancer.

Screening Recommendations

Despite the high incidence of prostate cancer, there is a lack of medical consensus on whether all men should be screened. Health professionals agree that all men need factual information on prostate cancer screening to help make an informed decision regarding screening. Experts recommend that men discuss with their doctor the potential benefits and risks of screening for the early detection of prostate cancer (American

Urological Association Foundation, 2009; Canadian Cancer Society, 2009; Cancer Care

Nova Scotia, 2002; Centers for Disease Control and Prevention, 2009; Smith,

Cokkinides, & Brawley, 2009; Smith, Cokkinides, & Eyre, 2005). According to the

Centers for Disease Control and Prevention (2004), there is insufficient evidence to determine whether the potential benefits outweigh the potential harms, therefore there is no scientific consensus that screening is beneficial or whether it improves health outcomes. Cancer Care Nova Scotia (2002) does not support the implementation of a

5 comprehensive population-based prostate screening program for Nova Scotia. According to the Canadian Cancer Society (2008b), there are mixed views on prostate cancer screening: The Canadian Task Force on Preventive Health Care recommends against

PSA testing; the U. S. Preventive Services Task Force does not recommend for or against routine PSA or DRE testing; the U. S. National Cancer Institute says there are no standard screening tests; the World Health Organization is unclear if PSA screening reduces the number of deaths from prostate cancer; and, the United Kingdom National

Health Services says that evidence does not yet support screening for prostate cancer.

Men who turn 50 years of age should start thinking about prostate cancer, even if they do not have symptoms, and consider talking to their physician about the benefits and risks of screening using the PSA and DRE so they can make informed decisions about the use of these tests (The Canadian Cancer Society, 2009; Public Health Agency of Canada,

2009). Men who are at higher risk due to family history or African ancestry should discuss the need for testing at an earlier age (Canadian Cancer Society). The Canadian

Cancer Society recommends that high risk men should speak to their physicians beginning at the age of 40 but symptomatic men should do so immediately. Cancer Care

Nova Scotia (2002) emphasizes that early identification of prostate cancer requires a partnership between men and their physicians. According to Cancer Care Nova Scotia, men need to be aware of the disease and what it may mean for them. Men who have concerns about the disease should discuss them with their physician. Physicians should discuss the potential benefits of early detection with men over 50 years of age who do not exhibit urological symptoms and those who are considered to be at greater risk (Cancer

Care Nova Scotia).

6 The American Cancer Society (2009) supports the following screening recommendations: Health care professionals should discuss the potential benefits and limitations of prostate cancer early detection with men before screening takes place; discussion should include an offer for testing with both PSA and the DRE annually beginning at 50 years of age for men who have at least a 10-year life expectancy; men at high-risk (African American men and men with a strong family history of one or more first-degree relatives who were diagnosed before 65 years of age) should begin testing at

45 years of age; and men at even higher risk, due to having multiple first-degree relatives affected at an early age, could begin testing at 40 years of age. The American College of

Radiology and the American Foundation for Urologic Disease recommend annual screening beginning at 50 years of age for the general population and at 40 years of age for African American men or men with a family history (Cookson, 2001). The American

Urological Association (2006) recommends that healthy men over 50 years of age should consider prostate cancer screening with a DRE and PSA test; and screening should occur earlier, at 45 years of iage in those who are at a higher risk of developing prostate cancer such as African American men or those with a family history. The American Urological

Association Foundation (2009) believes that the decision to have screening done should be made after a thorough discussion of the benefits and risks of screening. In men who wish to be screened, they recommend having a baseline PSA and DRE beginning at 40 years of age. Based on evidence published since 2000, Catalona, Loeb, and Han (2006) recommend that average-risk men should begin PSA testing at 40 years of age to establish a baseline PSA measurement and assess their risk for prostate cancer.

7 Most research on screening is focused on the perceptions and experiences of prostate cancer after the diagnosis is made (Albaugh, 2003; Chappie & Ziebland, 2002;

Evans et al., 2005; Hedestig, Sandman, Tomic, & Widmark, 2005; Hedestig, Sandman, &

Widmark, 2003; Maliski, Heilemann, & McCorkle, 2002; Wall & Kristjanson, 2005).

Numerous research reports and studies have focused on topics such as: rates of screening

(Cormier, Reid, Kwan, & Litwin, 2003; Etzioni, Berry, Legler, & Shaw, 2002; Hall et al.,

2004; Hoffinan, & Gilliland, 1999; Jacobsen et al., 1995; Miller et al., 2001; Pruthi et al.,

2006; Ross et al., 2004; Satia & Galanko, 2007; Smith et al., 2009; Smith et al., 2005;

Swan, Breen, Coates, Rimer, & Lee, 2003; Ward, Hughes, Hirst, & Winchester, 1997;

Weinmann et al., 2005); barriers to screening (Blocker et al., 2006; Cormier et al.;

George & Fleming, 2004; Ilic, Risbriger, & Green, 2005; McCoy et al., 1995;

McDougall, Adams, & Voelmeck, 2004; Myers et al., 1996; Price, Colvin, & Smith,

1993; Richardson, Webster, & Fields, 2004; Robinson, Ashley, & Haynes, 1996;

Robinson, Kimmel, & Yasko, 1995; Shelton, Weinrich, & Reynolds, 1999; Weinrich,

Reynolds, Tingen, Starr, & Reis Starr, 2000); enablers of screening (Berglund, Nilsson,

& Nordin, 2005; Blocker et al.; Chiu, Anderson, & Corbin, 2005; Consedine et al., 2007;

Cormier et al.; McDougall et al.; Miller et al.; Moran et al., 2000; Nivens, Herman,

Weinrich, & Weinrich, 2001; Pruthi et al.; Smith et al., 2005; Taylor et al., 1999; Tingen,

Weinrich, Heydt, Boyd, & Weinrich, 1998; Wallner et al., 2008; Ward et al.); and, benefits and/or harms of prostate cancer screening (Concato et al., 2006; Cookson, 2001;

Harris & Lohr, 2002; Kopec et al., 2005; Schroder et al., 2009; Smith, Humphrey, &

Catalona, 1997). The literature provides little evidence of research studies exploring the

8 experiences, perceptions, meanings, and decision making regarding prostate cancer screening for men who have never been screened.

Men should have an opportunity to learn about the potential benefits, limitations, and harms associated with testing for the early detection and treatment of prostate cancer so that they can make an informed decision with the assistance of a health care professional. To ensure the provision of quality care to all men, health care professionals need to be equipped with sufficient knowledge of prostate cancer screening and an understanding of how men decide to be screened. It is incumbent upon health care professionals to provide sufficient information to men to enable them to make informed decisions about screening.

There is an obvious lack of research about what prostate cancer screening means to men who have never been screened. Little is known about men's experiences, perceptions, and meanings of prostate cancer prevention or if men are aware of the controversy surrounding prostate cancer screening and if this influences their decision not to be screened.

Purpose of the Study

The purpose of this hermeneutic phenomenological study was to explore the perceptions and meanings that prostate cancer screening has for asymptomatic men who have never been screened. I wanted to explore the experiences of men who have not been screened for prostate cancer to gain an understanding of men's perspectives on screening and to understand the emotional, social and cultural aspects surrounding screening. The research question was: What does prostate cancer screening mean to men who have never experienced it? This study will generate knowledge which will assist health care

9 professionals to facilitate more informed decision making regarding prostate cancer screening and may contribute to policy making for a provincial screening program.

Significance of the Study

Nova Scotia has the third highest rate of deaths from prostate cancer in Canada

(Capital District Health Authority, 2004). Prostate cancer is often slow-growing and can be managed successfully (Canadian Cancer Society, 2004). According to the Centers for

Disease Control & Prevention (2009), while the slow growing prostate cancers never become a serious health threat or affect how long a man lives, there are prostate cancers that pose a serious health threat because they develop quickly and spread beyond the prostate to other body parts causing death. Screening can identify cancer early in the disease process before symptoms appear and therefore reduce men's risk of being diagnosed with advanced prostate cancer. Diagnosing prostate cancer at an early age may improve the likelihood of having successful treatment. Screening can reduce morbidity and mortality from prostate cancer, increase the likelihood of survival through early diagnosis and treatment, and add years to one's life. It is imperative for men to be aware of the facts surrounding prostate cancer and screening. With the controversy surrounding the benefits and risks of screening, and a lack of established guidelines and policy making for a provincial and national screening program, it is possible this may have an impact on men's perceptions, meanings, and experiences of screening.

Health care professionals need to be aware of prostate cancer screening from men's perspectives in order to better assist men to make an informed decision related to prostate cancer screening. Given the rates of incidence of and mortality from prostate cancer, it is realistic to assume that prostate cancer screening should be considered by

10 men who are fifty years of age and older. While some of these men are being screened, others are not. It is the perspectives of the men who have never been screened that need to be interpreted to better understand the perceptions and meanings of screening for these men. Improved understanding Will foster improved communication surrounding screening.

11 Chapter II

Review of Literature

This chapter provides a review of the literature surrounding prostate cancer and screening which was conducted using CINAHL, EBSCO, Medline, ProQuest, PubMed, and Science Direct. The search terms included prostate cancer and prostate cancer screening as well as all terms used in the headings as presented. The review focused on prostate cancer incidence and mortality rates, frequency of screening, value of screening, the barriers to and enablers of screening, and how gender, race, and meanings of masculinity affected men's experiences and perceptions, of prostate cancer screening.

Finally a summary of the review highlighted what was known and not known about prostate cancer screening, identified the gaps in the literature, and illustrated how the present study contributed to narrowing these gaps.

Incidence and Mortality Rates

Prostate cancer is having an impact on Canadians and Nova Scotians. Prostate cancer is the most commonly diagnosed cancer and is third in mortality among the

Canadian adult male population (Canadian Cancer Society/National Cancer Institute of

Canada, 2005; Canadian Cancer Society's Steering Committee, 2009; National Cancer

Institute of Canada, 2003,2004,2006) and Nova Scotian adult male population

(Canadian Cancer Society's Steering Committee).

Statistics show that the incidence of the disease is on the rise. In 2003, there were an estimated 18,800 new cases of prostate cancer and an estimated 4200 deaths that occurred as a result of prostate cancer in Canada (National Cancer Institute of Canada,

2003). Statistics from the Canadian Cancer Society/National Cancer Institute of Canada

12 (2005) re-emphasize the impact of prostate cancer in Canada and Nova Scotia. In 2005, an estimated 20,500 Canadians would be diagnosed with prostate cancer and 4300 would die of it. Based on these estimates, on average each week, 394 Canadians would be diagnosed with the disease and 83 would die of it. In 2005, an estimated 720 Nova

Scotians would be diagnosed with prostate cancer and an estimated 150 men would die from it. Based on these estimates, on average each week, 14 Nova Scotian men would be diagnosed with prostate cancer and three would die of it. In comparison, in 2006, there would be an estimated 20,700 newly diagnosed cases and 4200 deaths attributable to prostate cancer in Canada; of these, more than 98% of prostate cancer cases are diagnosed in men 50 years of age or older (National Cancer Institute of Canada, 2006).

The most recent statistics from the Canadian Cancer Society's Steering Committee

(2009) for the year 2009 show that prostate cancer will continue to be the most commonly diagnosed cancer among Canadian and Nova Scotian men and remain third in mortality. In 2009, an estimated 25,000 Canadians would be diagnosed with prostate cancer and 4400 would die of it; an estimated 990 Nova Scotians would be diagnosed with prostate cancer and an estimated 140 men would die from it (Canadian Cancer

Society's Steering Committee). Based on these estimates, on average each week, 481

Canadians would be diagnosed with the disease and 85 would die of it and on average each week, 19 Nova Scotian men would be diagnosed with prostate cancer and three would die of it. Since these figures are estimated, actual numbers of incidence and mortality will not be available until a later date, but can be compared with actual data from the Canadian cancer statistics from the year 2000. In the year 2000, there were

18,500 new cases of prostate cancer in Canada; 740 new cases in Nova Scotia; 3700

13 deaths attributable to prostate cancer in Canada; and 140 deaths attributable to prostate cancer in Nova Scotia. Although prostate cancer incidence rates are increasing, an aging population and increased prostate cancer screening testing explain some of this increase.

Frequency of Screening

The Canadian literature lacks provincial and national statistics on prostate cancer screening rates for both DRE and PSA testing. This is particularly evident with DRE testing. There is much more literature focused on screening using PSA testing instead of

DRE testing. Comparatively the U. S. did conduct three national surveys since 2000

(Ross et al., 2004; Smith et al., 2005) and most recently Smith, Cokkinides, & Brawley

(2008) reported 55.4% having PSA tests and 51.1 % DREs.

According to Ross et al. (2004), in the U. S. there is limited published information about the prevalence of PSA testing in subpopulations of men and studies do not routinely distinguish between PSA tests completed for screening or other purposes.

Medical records could provide statistics on the number of men who undergo DRE and

PSA testing, but there is no way of knowing if these men were screened for prostate cancer or for other reasons, such as to monitor prostate cancer progression or diagnose other health conditions. Additionally, medical records do not differentiate between DRE and PSA testing done to help diagnose symptomatic prostate cancer and DRE and PSA testing done to help diagnose asymptomatic prostate cancer.

Although prostate cancer screening is controversial among specialists, a considerable number of men are undergoing screening. Investigators who studied the incidence of prostate cancer diagnosis in the eras before and after serum PSA testing reported that approximately 15% to 40% of men over age 50 years have had at least one

14 PSA test performed (Jacobsen et al., 1995). According to the Health Canada (2004), a

1995 national survey conducted by the National Cancer Institute of Canada and the

Institute for Clinical Evaluative Sciences in Ontario reported that 15% of Canadian men over 40 years of age had a PSA test since 1990. Results from the 2001 to 2002 Canadian

Community Health Survey indicated that 43% of men over 40 years of age had a PSA test (Health Canada, 2004).

Value of Screening

PSA screening for prostate cancer is controversial. To date in North America there are no consensus guidelines on screening. Non-population based studies in the

1990s concluded that the prediction value of screening using PSA and DRE did not support comprehensive screening (Concato et al., 2006; Smith et al., 1997).

Undaunted by this, Weinmann et al. (2005) conducted a 10 year population based study in the U. S. North and Southwest to examine whether screening with the PSA test or DRE was related to reduced cancer mortality. The records of 1698 health plan members were reviewed; 769 were members who died due to prostate cancer and 929 were controls. Results indicated 62% of cases and 69% of controls for Caucasian men,

Mid 59% of cases and 61% of controls for black men had at least one screening PSA test or DRE. There were very few men who received PSA screening without a DRE. An important study finding was that a DRE was associated with a reduced risk of death due to prostate cancer. A limitation of this study was that the researchers could not precisely estimate the effect of PSA screening in isolation from the DRE.

Recent Canadian research has provided support for the use of PSA testing in prostate cancer detection. Kopec et al. (2005) conducted a population case-control study

15 among the residents of Metropolitan Toronto and five surrounding counties in Ontario.

To determine if screening with PSA reduced the risk of metastatic prostate cancer, data were obtained from 236 cases of men who were between 40 and 84 years of age when they were diagnosed with metastatic prostate cancer and 462 randomly selected controls who did not have prostate cancer. History of DRE and PSA testing, symptoms, and other data were collected from medical records and a self-administered questionnaire. Findings indicated that men who did not undergo PSA testing were more likely to develop metastatic prostate cancer, a progressive type that accounts for most of the mortality from the disease. Results indicated that in asymptomatic men, the frequency of PSA screening as per medical documentation was significantly lower among the cases compared to the controls. Most of the men were screened only once. Results indicated the average age of prostate cancer diagnosis was 68.2 years and the average age of metastatic prostate cancer was 71.5 years. This study was pivotal in suggesting that the benefits of PSA testing may outweigh the risks that act as barriers to testing such as fear, embarrassment, and worry about being diagnosed with cancer. The findings have shown that even a one- time PSA test is instrumental in saving lives. Early screening of asymptomatic men with

PSA reduced their risk of metastatic prostate cancer by 35%. The researchers observed a benefit of screening both men over and under 60 years of age.

European research was initiated in 1990 and completed in 2006 to evaluate the effect of screening with PSA testing on death rates from prostate cancer supports the use of PSA testing in prostate cancer detection. Schroder et al. (2009) conducted a randomized study among the residents of seven European countries. A total of 162,243 men were selected through population registries. The men were between 55 and 69 years

16 of age and did not have a history of prostate cancer. Screening included PSA testing, but depending on the center additional testing may have been done including DRE testing, transrectal ultrasonography, and/or biopsies. In the screening group, 82% of men accepted at least one offer of screening. During a follow-up of nine years, the incidence of prostate cancer was 8.2% in the screening group and 4.8% in the control group.

Findings indicated that PSA-based screening reduced the rate of death from prostate cancer by 20%. Similar to Kopec et al. (2005), this study was pivotal in suggesting that the benefits of PSA testing may outweigh the risks that act as barriers for men to be tested.

Barriers to Screening

Barriers to prostate cancer screening identified in the literature were social, cultural, psychological, and structural. In a quasi-experimental purposefully sampled study that tested educational interventions designed to increase prostate cancer screening of 1,432 men between the ages of 40 to 70 years from 11 South Carolinian counties,

Weinrich et al. (2000) found barriers to screening included putting it off, inconvenience of doctor's hours, not knowing where to go, not knowing screening was needed, cost, lack of insurance coverage, too long to wait, embarrassment, fear of impotence and examination, being treated rudely or unkindly, no transportation to get to screening, and being afraid of and refusing to go for screening. The more barriers men indicated, the less likely they would participate in the free screening. African American men, men of lower incomes, and unmarried men were less likely to participate in screening. Important to the findings of this study was that men who believed they were susceptible to prostate cancer

17 were less likely to intend to be tested when compared to those who thought they were not susceptible to the disease.

Several additional studies confirm and extend the above findings. Research with

40 to 70 year olds who had a brother or father with prostate cancer found that barriers included not having a doctor, embarrassment, cost, pain, not necessary, no symptoms, and failure of the physician to discuss screening (Cormier et al., 2003); fear guilt, threat to masculinity, increased likelihood of a prostate cancer diagnosis (George & Fleming,

2004); poor health, low annual income, single, and unemployed (Chiu et al., 2005).

Research with African Americans has also identified similarities and differences related to screening barriers. The differences include concern about others knowing test results, false results (Myers et al., 2000), lack of accurate information, myths, denial, apathy (Richardson et al., 2004), too busy, unlikely to get prostate cancer (MacDougall et al., 2004), invasion of pri vacy, threat to masculinity, and mistrust of health care providers

(Blocker et al., 2006).

In a cross-sectional study testing methods and strategies to recruit African

Americans into cancer risk behavior surveillance, Satia and Galanko (2007) described and examined screening rates and demographic, behavioral, psychosocial, and dietary correlates of prostate, breast, and colorectal cancer screening in a population-based sample of405 African Americans. Randomly selected from Department of Motor

Vehicle records, participants were between 18 to 70 years of age and resided in three urban and three rural counties in North Carolina. Five thousand potential participants were mailed a questionnaire with the option to complete it using the internet or by calling a toll-free telephone number. Of the sample, 44% were men, 54% were over the age of

18 50, 38% had some college education^ 60% were married, 77% were overweight or obese, and 88% resided in urban countries.

Findings showed that 78% of men reported having had a PSA test in the previous two years. Prostate cancer screening was reported to be statistically associated with older age (i.e., being 50 to 70 years of age), having a college or higher education, being married, and the belief in a diet-cancer relationship. Former smokers were more likely to have had PSA testing done when compared to their non-smoking counterparts. None of the cancer screening behaviors were associated with urban versus rural place of residence. This study was significant because it showed that prostate cancer screening strategies need to target men with lower levels of education, single men, and those with poor nutritional habits.

Australians Ilic et al. (2005), using a grounded theory approach, conducted 10 focus groups of 67 purposefully sampled men to discover the barriers men face, men's information needs, and ways of assisting men to make an informed choice about prostate cancer screening. The sample included men with a previous diagnosis of prostate cancer and asymptomatic men. Results indicated common findings across both groups including a lack of knowledge of prostate cancer and screening, poor access to health information, a poor patient-physician relationship, communication, and the influence of psychosocial masculine attitudes contributed to a poor understanding of prostate cancer and screening.

The asymptomatic men reported that men lack awareness because they do not want to talk about their health. The men reported that women are more aware and more open to discussing their health. Men with a previous diagnosis of prostate cancer indicated the lack of awareness was a result of political reasons which influenced the introduction of

19 screening. They believed that if men's issues received similar resources as women's issues, prostate cancer screening would not be problematic.

Within the two groups, opinion was equally divided regarding who should initiate the topic of screening. Some men believed it was the physician's role to bring up the topic and make it part of the annual examination; others thought it was the men's role.

These researchers also found that prostate cancer screening was not proactively sought due to the fear of being diagnosed, the effect cancer would have on their lives, and the belief that there was no reason to visit a physician unless they were ill.

The emasculating experience of a DRE was evident in this study. The researchers concluded that psychosocial masculine ways of thinking interfered with the way in which men interacted with their physician, utilized health services, gained access to health information, and reflected on their well being. The findings have emphasized the need for increased efforts in the provision of gender sensitive information surrounding prostate cancer and screening in order for men to make an informed decision about screening.

Enahlers of Screening

Many of the researchers who identified barriers to screening have also identified enablers. Ross et al. (2004) collected information about PSA screening within a national representative sample of4,360 men 50 years of age and older in the US. Information gathered from an in-person health survey revealed use of PSA testing for screening purposes was more common among the following: men aged 60 to 79; non-Hispanic; and

U. S. born; men with higher socioeconomic status; men with greater access to healthcare in terms of having health insurance, a usual source of healthcare, a recent physician visit; use of the English language; those practicing other preventive behaviors; men with a

20 family history; and among married men and men living in a two- or three-person family.

Rates of PSA screening were unexpectedly higher among men aged 80 years and older

(26%), men who reported being in fair or poor health (30%), and men with four or more chronic illnesses (41%). These high rates of screening can be attributed to wider access to health care with advancing age and more frequent physician visits for people with chronic illnesses.

Using a phenomenological approach, George and Fleming (2004) investigated factors that affected men's help-seeking in prostate cancer detection in asymptomatic and symptomatic purposefully sampled men mostly between the ages of 50 to 59 years.

Twelve men who had attended a service for the early detection of prostate cancer were interviewed. Results showed the fear of prostate cancer, the value of early detection, belief that cancer is curable, media coverage of prostate cancer, the presence of urinary problems, and encouragement by women were predictors which affected the men's help- seeking in the early detection of prostate cancer.

These same predictors of prostate cancer screening were found in other studies

(Consedine, 2007; Ilic et al., 2005; Smith et al., 2005) as well as the additional predictors of worry about getting prostate cancer, increased education levels (Wallner et al., 2008); perceived control of health, non-smoker (Chiu et al., 2005); belief in the benefits of screening (Berglund et al., 2005); race (Tingen et al., 1998; Weinrich et al., 2000); knowledge regarding screening, and being in good general health (Cormier et al., 2003).

African Americans. African American men may share many of the same predictors regarding screening as the general population however as a group they are more frequently diagnosed with prostate cancer. Nova Scotia has a significant number of

21 citizens of African descent and therefore this literature was also reviewed for predictors particular to this group. Myers et al. (1999) identified factors that predicted adherence to prostate cancer education and early detection by 413 African American men between the ages of 40 to 70 years who were patients at the University Health Services of the

University of Chicago. Men were randomly selected from computerized patient records and assigned to either a minimal (n = 221) or an enhanced intervention group (n = 192).

The minimal intervention group was mailed a letter and reminder message that invited them to attend a urology clinic for prostate cancer education and early detection along with a free prostate cancer early detection exam; men in the enhanced intervention group were sent the same information along with additional printed material and telephone contacts tailored to each recipient. A two-step educational intervention process was used where men were initially encouraged to make an office appointment to obtain information about prostate cancer and make a decision about screening. A telephone survey instrument that mirrored concepts in the Preventive Health Model (PHM) was developed for data collection.

Significant predictors of adherence were found (51% versus 29% for the minimal intervention group). These included being exposed to the enhanced intervention, being older than 50 years of age, being married, having a more formal education, believing that prostate cancer early detection testing should be performed in the absence of symptoms, having a history of benign prostatic hypertrophy, having a recent early detection exam, having an awareness of population risk for prostate cancer; believing in the efficacy of early detection, believing that prostate cancer can be prevented, believing in the salience and coherence of screening, having an interest in knowing whether one has the disease,

22 having perceived self-efficacy related to screening, having family and physician support for early detection, and self-reporting an intention to have an early detection test. This study identified multiple enablers of adherence to prostate cancer screening and interventions that can influence adherence among African American men. Myers et al.

(2000) in a subsequent study confirmed these known enablers and in addition found that belief in screening is also an enabler.

Additional research with African American men reported that health status

(Tannor & Ross, 2006), knowledge about the disease, physician visits, and not smoking were also predictors (Pruthi et al., 2006). One further study conducted with brothers of

African American men diagnosed with prostate cancer found that income, geographical location, urban dwelling, family history of the disease, and health insurance were enablers relative to screening (Ross, Uhler, & Williams, 2005).

Australians. In an Australian population-based telephone survey of 340 randomly selected men aged 40 to 80 years of age, Ward et al. (1997) set out to determine rates and predictors of men's participation in screening considering the Australian national recommendations against prostate cancer screening. Results indicated significant predictors of screening within the previous year included experiencing moderate or severe problematic urinary symptoms and worrying about prostate cancer. Fifty-one percent of the men reported they had heard of one or more tests for prostate cancer.

Knowledge of available tests was unrelated to variables such as age, birth country, risk perception, inconvenience of urinary symptoms, or anxiety. Knowledge of available tests and the socio-demographic variables of age, occupation, and county of birth were not associated with screening. Ward et al. emphasized that research is needed to investigate

23 men's knowledge of types of cancer, men's health beliefs and attitudes toward early detection, men's awareness of the tentative and controversial nature of screening, and men's knowledge of treatment options and their efficiency.

Pinnock, Weller, and Marshall (1998) of South Australia surveyed 695 men aged

40 years and older (range of 40 to 91) who did not have a diagnosis of prostate cancer.

The average age of the sample was 58.3 years. Age and visiting a physician for the presence of urinary symptoms were significant independent predictors associated with

PSA testing in this study. Results indicated that 47.7% of men who had visited their physician for such symptoms had been tested compared to 17.4% of men who did not visit their physician for such symptoms. Of those who experienced urinary symptoms, physicians initiated the test 80.6% of the time. The study did not find marital status, country of birth, occupation, education, or rural versus urban place of residence to be significant predictors associated with PSA testing but did conclude that men have a poor understanding of the screening process and need to be better informed about prostate cancer screening since 45.3% of men who reported having testing did not understand what the next step would be. Another valuable finding was that PSA testing was highest in the 70 to 79 year old age group and nearly half of men in this age group (47.1%) were first time tests. Leaving first time testing this late in life has implications as Kopec et al.

(2005) confirmed that the average age of metastatic prostate cancer in their study was

71.5 years. Earlier screening can identify cancer early in the disease process, improve the likelihood of having successful treatment, and reduce men's risk of being diagnosed with advanced prostate cancer.

24 Gender, Race, and Masculinity

Gender, race, and meanings of masculinity have been identified in the literature as having an effect on men's experiences, and perceptions of prostate cancer screening.

Using a participatory action research approach, Evans et al. (2005) conducted two rounds of focus groups with five communities of African Canadians in Nova Scotia. The study explored African Nova Scotian men and women's experiences of prostate and breast cancer. Data were collected from a total of 57 participants. Focus group composition varied as some groups included both genders and others were gender specific. The communities were geographically distinct and representative of rural and urban populations. Most participants were African Nova Scotian. Of the participants, three had prostate cancer, ten women had breast cancer, and the remaining knew someone who had prostate or breast cancer.

Results indicated that African Nova Scotians do not generally talk about or understand prostate or breast cancer. There was a sense of shame and stigma attached to having cancer which resulted in its silence. While cancer was recognized to have an unspoken presence according to the participants of this study, there were notable gender differences. Women would discuss having breast cancer to some extent and did not feel that their experience was different than that of any other women. Conversely, prostate cancer was shameful and embarrassing. Having prostate cancer diminished masculinity and men's quality of life. Prostate cancer, in particular, was revealed to be held in secrecy.

Evans et al. (2005) found that both men and women identified masculinity as a significant factor in men's avoidance of cancer screening, especially a DRE. Men

25 avoided prostate cancer screening because they perceived screening and the effects of being diagnosed with prostate cancer to be emasculating. Men described a DRE as embarrassing, uncomfortable, and compromising of their manhood. Men avoided prostate cancer screening because they were fearful that their sexual virility and performance would be affected once they were diagnosed with and treated for prostate cancer.

According to Evans et al., even the threat of dying from undiagnosed cancer was not enough to overcome many men's fears.

Racism was perceived to be a barrier to accessing and receiving cancer care for participants of this study, especially for the men. Men commented that African Nova

Scotians are treated differently by the health care system. Racism compromised masculinity and was identified as negatively affecting the quality of health care men received (Evans et al., 2005). As a result of the findings of this study, it is reasonable to presume that racism would have a negative effect on men's perceptions of sensitive health care topics such as prostate cancer screening.

Strengths of the study were its use of a participatory action research approach and that the results were indicative that health care policy and screening interventions need to be equally available, acceptable, and sensitive to issues of gender, race, and masculinity.

A limitation of this study acknowledged by the researchers was the small number of participants who had an actual diagnosis of prostate cancer.

Courtenay (2000) conducted a review of research on gender and health and found that gender differences exist which have implications for men's health. Men in the United

States experience more severe health conditions, have consistently higher death rates, and die nearly seven years younger than women (Courtenay). Within the review, it was

26 evident that men are very different than women in their personal health, health beliefs, and health promoting behaviors. According to Courtenay, while many sociocultural factors are associated with health behavior, gender is among the most important.

In his review, Courtenay (2000) examined why men engage in riskier behaviors and adopt fewer health promoting habits than women. He also studied the social practices and institutional structures that influence these beliefs and behaviors. Courtenay concluded that North Americans work to emphasize stereotypically feminine or masculine behavior in themselves and others. He acknowledged that the beliefs and behaviors developed in men and boys, the resources available to demonstrate masculinity, and the resources boys and men use to enact gender are usually unhealthy.

Courtenay (2000) identified that many factors account for how gender is constructed. Some of these include that: even as infants, boys are treated and nurtured differently than girls; media representations of men and boys are different than women and girls; women tend to take on the more feminine caring and helping working roles while men take on the more masculine working roles such as business, manual labor, and dangerous jobs; participating in sports is associated with masculinity; health messages are more geared to women; men are healthier than women; and women are at greater risk than men to develop illness.

According to Courtenay (2000), there is an abundance of evidence to support that gender is socially prescribed for men and women. Men and women learn to adopt different ways of thinking and behaving in order to demonstrate their prescribed gender.

According to Courtenay, the following describes being a man as he was socially prescribed to be. A man would: be relatively unconcerned about his health and well-

27 being, place little value on health knowledge; perceive himself to be stronger, both physically and emotionally, than most women; consider himself as independent, not needing to be nurtured or helped by others; be unwilling to ask for assistance; not develop personal relationships, but instead would have a small social group; place significance on work and employment as it is a means to maintain his self esteem and sense of self; face danger courageously, ignore risks, and have little concern for personal safety; see himself as invulnerable to disease and the risks commonly associated with unhealthy behavior; be uninterested in learning about health; and adamantly refuse doing anything that he or anyone else would consider feminine.

The adoption of the above beliefs, behaviors, and meanings of masculinity significantly influence men's health and longevity. Men are more likely to opt for risk and physical discomfort instead of being connected to emasculating traits that are associated with illness, accessing health care, and ultimately, femininity. These include vulnerability, weakness, dependence on others, asking for help, stigma, and shame.

Health care use and positive health beliefs or behaviors are socially constructed forms of idealized feminine behavior (Courtenay, 2000). Since the carrying out of any one health behavior would require men to dismiss multiple constructions of masculinity

(Courtenay), most men would be inclined to avoid healthy behavior such as prostate cancer screening.

Courtenay (2000) and Evans et al. (2005) have provided helpful information on men and gender which can be used to interpret how gender and masculinity influence men's health and consequently prostate cancer screening. Men place significant meanings on gender and masculinity which ultimately affects their health, health behaviors, beliefs,

28 and perceptions and meanings of prostate cancer screening. The literature reveals the meanings men place on their personal health and prostate cancer screening and are related to what it means to be a man. Men consider having prostate cancer to be a weakness and prostate cancer screening to be an emasculating experience. This is especially true of prostate cancer screening with a DRE.

Summary of Literature Review

The literature review addressed prostate cancer incidence and mortality rates, frequency of screening, the value of screening, the barriers to and enablers of screening, and how gender, race, and meanings of masculinity influence prostate cancer screening.

The literature has shown there is a lack of consensus about screening across North

America as well as a lack of screening databases.

We know prostate cancer is the most common type of cancer in Canada among the Canadian adult male population (Canadian Cancer Society/National Cancer Institute of Canada, 2005; National Cancer Institute of Canada, 2003,2004,2006). The incidence of prostate cancer is significant with one in 7.4 Canadian men developing the disease within his lifetime and one in 27 dying from the disease. Prostate cancer is third in mortality among Canadian males, and Nova Scotia has the third highest rate of deaths from prostate cancer in Canada.

Canadian research by Kopec et al. (2005) has indicated that there is value in prostate cancer screening. The research indicated that screening asymptomatic men even once can reduce their risk of developing the disease by 35%. The literature has also revealed that despite the controversy surrounding screening the benefits of screening outweigh the harms, some men are undergoing screening while others are not.

29 Barriers to screening identified in the literature included the following: gender and masculinity; embarrassment, fear, worry, and guilt; age; lack of awareness and knowledge of prostate cancer and screening; lack of symptoms; psychosocial ways of thinking; refusing to go for testing; putting testing off; not knowing where to go or who to go for screening; personal beliefs (the belief that there is no need to be screened, belief that screening is a threat to one's health); inconvenience; pain; lack of a means to get to screening; lack of access to health care professionals, insurance and services; cost; time; poor physician-patient relationship; race (African Americans); income (lower levels); being single and unemployed; personal self-rating of health status; and receiving an educational intervention.

Enablers of screening identified in the literature included the following: accessibility to health care; free screening; health beliefs; presence of a family history; visiting a physician, physician discussion and a positive physician-patient; positive attitude toward testing; attitudes; awareness and knowledge; previous screening history; perceived control and responsibility for health; health status; educational interventions; physician, spousal and family support; marital status; race (Caucasian men); age; economic status; employment; non-smoking status; fear; worrying about prostate cancer; presence of urinary symptoms; interest in knowing; history of benign enlargement of the prostate (BPH), and media publicity.

The literature has identified that gender, race, and meanings of masculinity have an effect on men's experiences, and perceptions of prostate cancer screening. The meanings men place on prostate cancer screening are related to what it means to be a man. The research reviewed has provided lists of what fosters and prevents screening

30 however these lists in the best studies still only account for 30-40% of the predictors regarding screening. This leaves us with the realization that there is a great deal left to learn about how men come to make decisions about screening.

No studies were found in the literature that explored what screening means for asymptomatic men who have never been screened. This is a significant gap in the literature. The human meaning of the experience of screening needs to be studied.

Capturing this meaning may be used for policy development, change in practice, increasing our understanding, and raising consciousness to what remains unknown. This hermeneutic phenomenological study begins to address this gap and provides an in-depth analysis of the perceptions and meanings of prostate cancer screening for participants.

31 Chapter III

Methodology and Methods

This chapter provides a general description of phenomenology, a historical overview, and its guiding principles. Hermeneutic phenomenology and its assumptions are discussed in relation to Husserlian phenomenology as well as its applicability to nursing research. Finally, the chapter presents the study methods including a description of participants, recruitment procedures, data collection, ethical considerations, analysis, trustworthiness, and my location as a researcher.

Phenomenology

Phenomenology focuses on what a situation or condition means for the individual, the meanings of the phenomenon, and ultimately, the lived experience of the participants in the phenomenon under study. In this study, phenomenology allowed me to gain insight into the perceptions, meanings, and experiences of prostate cancer screening for participants. I was interested in the essence or meaning of the phenomenon of prostate cancer screening for men who had never experienced it. Since the lived experience of this meaning was the central aspect of my research, a phenomenological approach enabled me to understand the meaning of prostate cancer screening for these men. The lived experience was captured in the language of the men. I wanted to understand men's reality from their perspectives and to give meaning to what they experienced. By choosing phenomenology, I entered into a naturalistic inquiry to find out how men construct reality within their own context. I have interpreted their experiences and brought these experiences to language.

32 Historical overview and elements of phenomenology. Based on tenets of philosophy and psychology, the history of phenomenology dates back to around the first decade of the twentieth century when philosophers believed that science and theories could not explain all human concepts or questions. In response to a critique of positivism and organized religion (Cohen, 1987) and in attempt to find a process to conduct rigorous research to understand the meaning of human experiences, phenomenology was developed.

The term "phenomenology" was first used in a scientific context in 1764 by

Immanuel Kant (Cohen, 1987). Kant viewed phenomenology as the study of phenomena, the appearance of things (Cohen). According to Cohen, Spiegelberg (1960) wrote about the history of the Phenomenological Movement and decided to call it a movement to show that it was not a stationary philosophy but that it has evolved with the varying philosophers who have assisted in its development. The Phenomenological Movement occurred within three phases: the Preparatory, German, and, French Phases.

According to Streubert-Speziale and Carpenter (2003), the Preparatory Phase was dominated by key philosophers Franz Brentano (1838 - 1917) and his student Carl

Stumpf (1848 - 1936), whose work demonstrated the scientific rigor of phenomenology.

According to Cohen (1987), Brentano's objectives were to reform philosophy in terms of humanity so that it could supply answers that organized religion had failed to provide as well as to make psychology genuinely scientific.

Brentano was the first to discuss the importance of inner perceptipn and intentionality (Cohen, 1987). Inner perception is an awareness of our own psychic phenomena and not unreliable introspection (Cohen). Intentionality means that

33 consciousness is always consciousness of something (Streubert-Speziale & Carpenter,

2003). Consciousness is regarded as an awareness of what is known - the lived experience. Stumpf founded experimental phenomenology and was monumental in coming to the realization that knowledge comes from the analysis of empirical material

(Cohen). Stumpf designed this type of analysis as a means to discover knowledge through actual and imaginary inquiry.

The German phase was dominated by Edmund Husserl (1859 - 1938) and Martin

Heidegger (1889 - 1976). Husserl had an idea that philosophy should become a rigorous science which could restore meaning with deeper human issues (Streubert-Speziale &

Carpenter, 2003). For Husserl, phenomenology could be the foundation for science and philosophy. Four concepts fundamental to the development of phenomenology include: intentionality (as mentioned), description, reduction, and essence. According to Baker,

Wuest, and Stern (1992), Husserl wanted to further develop the understanding that consciousness is always conscious of something. In other words, the individual who is external to the world, is directed towards the world, and then experiences the world in some way or another. Any human experience is a valuable and valid source of truth, reality, or knowledge. Reality is created by humans within the social milieu of their daily lives when consciousness of the phenomenon is recognized. Husserl had a belief that this experience had meaning.

The work of Husserl can be divided into three phases. In the first phase or the pre- phenomenology phase (1887 - 1901), Husserl interpreted mathematics using psychology beginning with the subject (Cohen, 1987). It was during this phase that Husserl worked closely with both Brentano and Stumpf. The second phase (1901 - 1906) involved

34 phenomenology as a limited epistemological enterprise where objective and subjective experience stood on equal ground (Cohen). Both the objective and subjective aspects of any experience were equally important during this phase. Husserl did not value one or the other. During the last phase (1906 - 1916) known as "pure phenomenology," Husserl advanced the concept that phenomenology was the universal foundation of science and philosophy (Cohen). Subjectivity was the valued and dominating concept. Objectivity and subjectivity did not stand on equal ground for Husserl at this stage as subjectivity had more importance. It was during this time that he came to value the meaning of experiences. After losing his son in World War I, Husserl's work took him in a new direction. Husserl believed that science was lacking a philosophy that could restore contact with deeper human issues (Cohen). Husserl emphasized the value of essences and intuiting in his later work. Essences incorporate all the elements which are linked to the true meaning of something (Streubert-Speziale & Carpenter, 2003). Essences, according to Husserl, allowed one to understand the meaning(s) attached to the phenomenon under observation. Intuiting is an accurate interpretation of what is meant by the description of a phenomenon (Streubert-Speziale & Carpenter). Through intuition, researchers interpret and describe the true meaning of the phenomenon by those who have experienced it.

Intuition (developing one's consciousness through looking and listening) is important in knowledge development (Smith, 1997).

Phenomenological reduction and intersubjectivity were developed by Husserl during this stage. Phenomenological reduction is defined as a recovery of original awareness (Streubert-Speziale & Carpenter, 2003); intersubjectivity describes how subjective awareness and understanding can be rteached in a common world (Fain, 1999).

35 For Husserl, there was a necessity to seek genuine data that could be interpreted without allowing personal interpretations to bias them (Cohen, 1987). Husserl was striving for research to be free from bias, personal assumptions, beliefs, and previous knowledge.

Therefore, as a vital part of phenomenological reduction came the notion of bracketing.

Bracketing is an ongoing practice that involves preparing, evaluating, and providing systematic, ongoing feedback during the inquiry (Polit & Beck, 2004). It is a process that takes place once the researcher has fully acknowledged his or her previous knowledge of the phenomenon under study, including any and all prejudices, assumptions, biases, and beliefs. Through bracketing, Husserl believed intersubjectivity could be avoided and objectivity.could exist. The final concept developed by Husserl is lifeworld. Lifeworld is the world of the lived experience (Fain), the central feature and purpose of phenomenology.

The second leading founder in the German phase was Heidegger who followed

Husserl's work closely. For Heidegger, phenomenology was the solution. Heidegger introduced hermeneutics into the study of phenomena as he believed that interpretation, not just description, could reveal meaning. Heidegger who was once Husserl's assistant, lost contact with Husserl, possibly the result of conflicting ideas of philosophy (Cohen,

1987) as Heidegger rejected that the researcher could free his or her mind of conscious thought and previous beliefs. Heidegger also differed with Husserl's philosophy in that he believed humans live life by experiencing the world, not by knowing it. Heidegger believed that since humans took phenomena for granted, interpretation could provide a representation of them (Heidigger, 1962). Eventually with his involvement in the Nazi regime, Heidegger lost faith in human beings and the nature of subjectivity (Cohen).

36 According to Cohen, Heidegger was instrumental in sparking the inspiration of later

French phenomenologists.

The French phase involved three dominating men. Gabriel Marcel (1889 - 1973),

Jean Paul Sartre (1905 - 1980), and Maurice Merleau-Ponty (1908 - 1961) who were known as the French phenomenologists who were inspired by the work of Heidegger.

The French phase saw the development of the concepts of being-in-the-world and embodiment. Marcel saw phenomenology as a beneficial introduction of analysis of being

(Cohen, 1987). These concepts refer to the belief that all acts are developed on foundations of perception or original awareness of some phenomenon (Streubert &

Carpenter, 1995). Marcel had a vision to reunite the object with the subject in this period.

The value of the lived experience was further established during this phase.

Sartre was the first French philosopher to engage with phenomenology and used it as an instrument for ontological existentialism in an attempt to reunite the object and the subject (Cohen, 1987). According to Cohen, Sartre's vision was "existence precedes essence" or that an individual's concrete consciousness and behaviour preceded his or her essence or character, the outcome of his or her acts. Sartre emphasized the importance of change. For Sartre, change meant understanding and going beyond oneself (Cohen).

Intentionality for Sartre was the key feature of consciousness. Intentionality during his time meant the separation and independence between consciousness and the person

(Cohen).

Further developing phenomenology, Sartre's friend and philosopher Merleau-

Ponty believed that the science of humans existed. Developing the concepts of embodiment and being-in-the-world, he introduced a belief that all arts are constructed on

37 a foundation of perception and meaning of some phenomenon. Merleau-Ponty believed human behaviour represented a relationship between the subject and his or her world where the two are in constant dialect with one another (Baker et al., 1992). For Merleau-

Ponty, the world and the person were united. An individual, according to Merleau-Ponty, could only describe the world as he or she experienced it (Baker et al.).

Merleau-Ponty was more concerned with science than his colleague as he believed a science of mankind was possible (Cohen, 1987). In attempts to demonstrate his belief, he distinguished the findings of investigating perception using a phenomenological approach from those using a positivist approach. Describing how the first added valuable insights, he ignored the French positivist conception of science which ignored experience and focused on the objective (Cohen). Since his time, the use of phenomenology has expanded to other disciplines such as nursing.

Hermeneutic phenomenological research. There are numerous forms of phenomenological research which are based on the various philosophical positions. The most popular approaches used by nursing derive from the philosophical work of Husserl on modes of awareness (epistemology) and the hermeneutic tradition of Heidegger, which emphasizes modes of being (ontology) (Ray, 1994).

Husserlian or descriptive phenomenological research consists of three interlocking processes: phenomenological reduction, description, and the search for essences (Morse & Richards, 2002). Hiedeggerian, interpretive, or hermeneutic phenomenology involves the exploration of a pedagogically grounded concept within the everyday life experience (Morse & Richards) and the union of both the description and interpretation of the phenomenon.

38 These approaches differ from one another in the degree to which interpretation is acceptable, but both represent strategies that acknowledge the need to immerse oneself in the data, engage with data reflectively, and generate a rich description that will enlighten the reader as to the deeper essential structures underlying a particular human experience

(Thorne, 2000). Husserl's descriptive tradition (Husserlian phenomenology) and

Heidegger's interpretive tradition (hermeneutic phenomenology) differ in how the findings are generated and used. For example, Husserlian phenomenologists claim that researchers can discard all consciousness and personal knowledge (through bracketing) to understand the essential lived experiences of the participants; hermeneutic phenomenologists claim that the researcher's prior knowledge is valuable to produce a meaningful inquiry. Some Husserlian phenomenologists would not conduct a detailed literature review prior to a research inquiry; hermeneutic phenomenologists would claim that the literature review helps the researcher to realize that research is needed in the area of inquiry. Husserlian phenomenology describes core concepts and essences; hermeneutic phenomenology takes the description further to interpret them and provide meanings found in life experiences. Hermeneutic phenomenology emphasizes that individual human experiences are unique to the individual and are a result of interpretation of experiences. For the purposes of this study, hermeneutic phenomenological research will be used.

Hermeneutic phenomenological research bridges the traditional mind-body dichotomy that has long been debated by philosophers (Cohen, 2000). Phenomenologists and existentialists believe that the mind and the body (i.e., consciousness and physical

39 existence) are united (Cohen). Truth and reality are influenced by the worldly experiences of individuals.

Hermeneutic phenomenology is a research involving the need to understand human experiences through interpretation. This type of research was used to understand how men interpreted their lives and made meaning of what they experienced in relation to prostate cancer screening. In other words, I interpreted the perceptions and meanings of prostate cancer screening for men who had never been screened. This experience was found within the text and narratives of the men. Interpretive phenomenology incorporates intersubjectivity, understanding, and interpretation signifying that the researcher and the participants come together to derive significant meanings embedded in the text. Through processes of reflection, writing and rewriting, and thematic analysis, I described and interpreted the essence or the meaning of the lived experience (Morse & Richard, 2002).

By listening to the language of the men, observing how they expressed themselves, observing their actions, and interpreting this body language, the meaning of prostate cancer screening was interpreted.

Guided by Hermeneutic phenomenology the methodology enabled me to understand men's perceptions and meanings of prostate cancer screening. This understanding directed me to more effectively meet the learning needs of men related to prostate cancer screening for men who have never been screened. The interpretation of these meanings as well as the significance for practice, research, policy, and education are discussed in the final chapter.

Phenomenology in nursing research. According to Baker et al. (1992), it was only in the 1980s that nurse researchers began to use phenomenology. Concepts were

40 first introduced to nursing in 1976,1982, and 1983 by authors Paterson and Zderad,

Oiler, and, Omery, respectively. In 1985, Parse, Coyne, and Smith developed a phenomenological methodology investigating the lived experience of health (Baker et al.).

Since phenomenology is a process of determining what life experiences of people are like and what these experiences signify, phenomenology is useful from a nursing perspective. In order to provide quality care to patients, nurses must attempt to understand the experiences of their patients to some extent. Understanding patients' perceived requirements when providing care is important to meeting their requirements.

Registered nurses need to be aware of the answers to important and sensitive questions regarding patients' experiences. Phenomenology provides an approach to uncover and understand the perceptions and meanings of these experiences. Through listening to narratives and observing participants' behaviour, registered nurses can understand the experiences and deliver holistic and comprehensive care.

Since the focus was to describe the lived experience from the participant's point of view, I developed a purpose and questions to capture, describe, and interpret the lived experience. Through these questions, I created an opportunity for the participants to share their lived experiences. I was the instrument in this study. During data collection, I observed, responded to, and interacted with the participants while reflecting on and attaching meaning to what was being said. I immersed myself in the lived experience as it was told to me by the participants.

Phenomenological research can be beneficial to participants as it allows those who may have otherwise been silenced, to have a voice. It allows participants to fully

41 disclose their experience which they may have been unable to discuss before. The participant may also feel that he was instrumental in assisting the exploration of the unknown which will ultimately help others in a similar circumstance or condition.

Through the disclosure of the lived experience, the participant may even come to a new realization of himself. The fact that the researcher has the ability to probe for more detailed responses allowed for the richness of the description, possibly one that the participant did not know existed.

Phenomenological research is helpful to describe phenomena which are poorly understood. Phenomenology can allow nurses to strengthen their knowledge base in order to promote health even amidst illness. Findings can allow registered nurses and health care professionals to support and care for clients and their families especially when they are going through a health crisis. Research findings can allow health care professionals to realize what they are doing right, what they are doing wrong, and what ultimately has to change. In addition, research findings in phenomenology can allow registered nurses and health care professionals to approach their clients in a more holistic manner.

Methods

This study was conducted using a hermeneutic interpretative phenomenological approach to explore the perceptions and meanings of prostate cancer screening for asymptomatic men who had never been screened. Using Heideggerian hermeneutic phenomenology as a research method, men living in rural Communities in Atlantic

Canada were individually interviewed. Interpretive analysis of all interviews was completed. The following sections provide a description of the participants, data collection, ethical considerations, analysis, trustworthiness of the data, and an explanation

42 as to why I was interested in the perceptions and meanings of prostate cancer screening for men who had never been screened.

Sample and inclusion criteria. According to Gillis and Jackson (2002), participants are "the individuals who inform the study" and "are viewed as active participants in the research process and equal partners with the investigator" (p. 184).

Participants aim to assist those interested to better understand their lives and the social contexts in which they live and create meaning (Gillis & Jackson). This study included a total of seven men. Demographic data collected on age, education, occupation, marital status and self-described health status are as follows: Participants ranged in age from 43 to 65 years; Four of the seven men reported not completing high school; One completed grade seven; one completed grade nine; and two men completed grade 10; Two completed grade 12 plus one to two years of technical or trade school; And one completed a graduate degree. Three of the men were employed fulltime, one was retired, and three were unemployed due to disability. Four men were married, two were divorced, and one was single. Perceived health status ranged from poor to excellent with five of the seven men reporting generally good health.

The men were Caucasian, English speaking, living in a rural community in

Atlantic Canada, without a diagnosis of prostate cancer, and most were without any symptoms of prostate cancer. Three participants may have been, and one participant was, partially or completely screened for prostate cancer in the past. Two participants reported that they may have been unknowingly screened for prostate cancer by having a DRE and/or PSA test and reported the presence of urinary symptoms in the past and/or present.

One man reported experiencing dysuria and the other reported experiencing nocturia.

43 Another participant had a DRE in the past for prostate cancer screening, but he was unaware of PSA testing as a screening test and assumed he was fully screened for prostate cancer. The fourth participant was aware that he received prostate cancer screening by having both DRE and PSA testing completed, but he was confused by the terminology of my recruitment advertisement and script. Three participants reported that they had never been screened for prostate cancer.

Using a hermeneutic interpretive phenomenological approach, a sample of seven men provided enough thick description of the phenomenon to generate meaningful themes. In qualitative research, smaller sample sizes are normal because the purpose of the investigation is to gain rich and essential descriptions of the phenomenon under investigation by those who are experiencing it. I used the concept of saturation to determine the actual number of participants during the data collection and analysis.

Saturation in qualitative research occurs at a point in the data collection when new data yield repetitive and redundant information (Polit & Beck, 2004) as participants' dialogue become cyclical, thereby confirming previously gathered data.

Sampling. Purposive sampling was used to select the participants for this study.

Men between the ages of 50 and 65 years were initially chosen for this study because this is the age that men should begin thinking about prostate cancer and discussing prostate cancer screening with their physician or health care professional. Another reason for choosing this age group included the estimated incidence of and mortality rates from prostate cancer. In 2006 an estimated 20,700 newly diagnosed cases and 4200 deaths attributable to prostate cancer were predicted in Canada; of these, more than 98% of prostate cancer cases are diagnosed in men 50 years of age or older (National Cancer

44 Institute of Canada, 2006). Purposive sampling ensured that the participants had experience with the phenomenon under investigation (Gillis & Jackson, 2002). By purposively selecting men who met the study criteria, the needs of the study were met enabling me to collect information about men's perceptions and meanings of prostate cancer screening.

Recruitment. The recruitment of participants was achieved by posting an advertisement (See Appendix A) in the local newspapers) several times to invite participants to join in the research. The advertisement contained the purpose of the research, eligibility criteria, and contact information. Participants contacted me by telephone. During initial telephone contact with the participants, I provided an all- inclusive description of the research using a specified telephone recruitment script (See

Appendix B). At that time, I set a date and time to meet the participant in order to initiate the process of written informed consent (See Appendix C) and begin data collection.

The age range of the participants for this study was modified to include men between the ages of 40 and 65 years because a 43 year old participant expressed interest in participating in the study. Considering the difficulty with recruitment, the age range was adjusted and ethical approval via an amendment was obtained.

For most participants in the study, I arranged to have a copy of the consent form mailed or delivered to participants before the initial interview so that they had adequate time to read about the study in which they were consenting to participate. This helped them understand the nature of the study. I asked participants to review the form prior to meeting with me for the initial interview. I reviewed the consent form and answered any questions or concerns participants had when I met them for the first interview. Informed

45 consent was achieved when I provided participants with adequate information about the purpose of the research, what was to be explored, and how data would be collected.

Participants were encouraged to ask questions or discuss any concerns they had before agreeing to participate in the study. All participants were provided with a copy of the informed consent form for their own records. Participants were provided with my primary supervisor's contact information if they needed to contact her for any reason before or during the data collection. Additionally, in the event that participants may have had any difficulties with, or wished to voice concern about, any aspect of their participation in this study, they were given the contact information for Patricia Lindley,

Director of DalhOusie University's Office of Human Research.

I asked participants to refrain from seeking any information about prostate cancer screening before I met with them and while they were participating in my research because my study participants were men who had never been screened for prostate cancer. To ensure participants had not sought information on prostate cancer screening between the time of responding to the recruitment advertisement and participating in the interview, I asked ask them about this when I met with them to obtain consent and begin data collection.

Data collection. As participants in the study, the men were asked to participate in two complete rounds of one-to-one interviews which were audio taped and recorded verbatim and arranged at a time and place mutually agreed upon, such as the participants' homes or my office. The interviews were, on average, one hour in duration. I ensured that the interview setting accommodated both participants' needs for privacy and comfort during the data collection. Prior to each interview, I thanked each participant for agreeing

46 to participate in the study and spent time in conversation to allow the men to feel comfortable with me and the setting. I asked each participant's permission for each interview to be audio-tape recorded. The participants were told that at any time during the interview, the tape recorder could be turned off if they wished.

The interviews provided "a face-to-face verbal interaction in which I attempted to elicit information from the participant through direct questioning" (Gillis & Jackson,

2002, p. 466). Open-ended interview questions were used to explore the topics more freely. An interview guide (See Appendix D) was used for data collection during the initial interview. Background data and demographic information were collected throughout the interview. These included the following: age, education, occupation, marital status, and self-described health status. The interview guide allowed me to gather descriptive details about what prostate cancer screening meant to men and how men conceptualized screening. Probing, prompting and redirecting questions, if needed, were used during the interview process. At the time of the first interview, I asked each participant if I could meet with him again and arranged a time and place for the second interview. I explained to each participant why the second interview was being conducted.

Observational notes were taken during and after each interview to enhance the data and record my thoughts on each interview. These were transcribed as data. Field notes recorded nonverbal behavior as this allowed me to listen with my ears and eyes to the participants' experiences and beliefs. "Field notes attempt to capture, with as much accuracy as possible, descriptions and interpretations of individuals, interactions, and events" (Gillis & Jackson, 2002, p. 229-230).

47 I took reasonable precautions throughout the data collection to ensure my personal safety. For example, when I met had with men in their homes to conduct the interview or at nighttime, I carried a cell-phone with me at all times and let a personal contact know the time that I was conducting all interviews and the time I expected to return.

As data analysis progressed, the second set of one-to-one interviews was conducted to confirm my understanding of the data, to ensure all the information from the previous interview had been truthfidly interpreted, and to gather additional data. This interview allowed me to perform member checking. For the majority of participants, this set of interviews occurred nine weeks after the initial interview. During this interview, I presented participants with my synopsis of their first interview including emerging themes and excerpted quotations. I discussed with participants whether the themes I had identified were meaningful to them. This allowed me to hear participants' views on the analysis of the first interview. If any of the participants provided further insights or disagreed with the analysis, their perspectives were integrated into the written research report. Data analysis was enhanced during these interviews as participants discussed the findings and new themes emerged. The interviews lasted 1-114 hours each.

If participants did not feel comfortable discussing their experiences during the interview(s), they had the right to refuse to answer any questions of withdraw from the study. If any feelings of discomfort or issues arose or if the participants wanted to discuss prostate cancer screening, I recommended they contact their family physician or health care professional to discuss their concerns. If participants asked me a question that I could not answer, I told them that I did not know the answer.

48 The tapes were kept in a locked filing cabinet to which I have the only key and were labeled with a fictitious name. All written and tape recorded information was maintained in a locked filing cabinet in my office at St. Francis Xavier University School of Nursing for seven years, post publication of the study (as per Dalhousie University

Policy on Scholarly Integrity). I will be the only person to have access of the filing cabinet. Information and all data will then be destroyed after seven years.

Analysis. In order to describe the lived experiences and give meanings to each participant's perceptions of the phenomenon, hermeneutical phenomenological research involves analyzing, describing, and interpreting the phenomenon under study. Data analysis began with data collection. During the interviews, I was actively listening and thinking about the meaning of what the participants were saying. The goal of the analysis was to produce a thick description that accurately captured, reflected, interpreted, and communicated the perceptions and meanings of prostate cancer screening for the men involved in this study.

Analyzing involved extracting significant statements, categorizing the data, and making sense of the essential meanings of the phenomenon; description occurred when I understood and defined the phenomenon (Polit & Beck, 2004). Schools of phenomenology have developed different approaches to data analysis. Within this study,

Heideggerian hermeneutic interpretive analysis was used to analyze the data.

The idea of a dialectic process is important to hermeneutic phenomenological research and is synonymous with the hermeneutic circle. According to Cohen, Kahn, and

Steeves (2000), the hermeneutic circle is a metaphor that guides the process of inquiry on several levels: Analysis begins as parts of the texts are understood in relation to the whole

49 text and vice versa; the individual texts are understood in relation to all the texts and vice versa. According to Cohen et al., when the researcher begins analysis, he or she has a vague and unconfirmed view of the meaning of the data as a whole and a reflexive awareness that this view is an anticipation of meaning. This awareness causes a dialectical examination of parts of the data to better understand the whole. With an improved understanding of the whole, examination of different data or the same parts of the data at a deeper level allows for the analysis to proceed (Cohen et al.).

Transcribed interviews, observational notes, journals, and examples of human behavior were treated as text analogues for interpretive analysis (Leonard, 1994).

According to Leonard, three interrelated processes occur during data analysis in a hermeneutic study. These include thematic analysis, analysis of specific incidents to generate exemplars, and the search for paradigm cases or patterns of meaning. During thematic analysis, all cases (all interviews, journals, field notes, etc.) were read as a whole multiple times to acquire a feeling for each of them and to arrive at a global analysis and reflection (Leonard). During all readings, the text was interpreted by distinguishing specific messages called meaning units, which emerged throughout the text and continued until interpretation indicated a new unit (Berg, Skott, & Danielson,

2006). Each meaning unit was underlined and interpretations of the content and significance were formulated in the margin and numbered. As a result of the meaning units, themes were identified in the data. All themes created a basis for continued interpretation and helped me search for similarities and variations of the meaning units.

Themes were identified and compared with the original text. This allowed me to stay true

50 to the text. All interviews were reread once thematic analysis was complete to look for any additional interpretations which were incorporated into the analysis.

The second phase of the interpretive process (analysis of exemplars) involved the analysis of specific incidents where all aspects of a particular situation and the participant's responses to it were analyzed together (Leonard, 1994). The analyzed event encompassed the men's situations, concerns, actions, and practices. Final patterns or themes came from this analysis. These included stories or vignettes that captured the perceptions and meanings of prostate cancer screening for these men.

Ethical Considerations

The proposed research was submitted for ethical review and approval from the

Health Sciences Human Research Ethics Board of The Office of Human Research Ethics

Administration at Dalhousie University prior to the interview process. In addition, throughout the research process, I had contact with my supervisor who acted as an external member indirectly connected to the research and ensured I fulfilled the ethical requirements of the research.

Respect for persons. "Inherent in the ethical principle of respect for persons are the concepts of autonomy, dignity, uniqueness, freedom, and choice" (Gillis & Jackson,

2002, p. 330). Establishing a full written informed consent, and maintaining confidentiality were obligatory responsibilities of the research. Since anonymity was not entirely possible as I knew the identity of participants, I protected their identities through the use of fictitious names in all reports of my data. I respected all participants' autonomy as they had the right to make their own choices without feeling pressure or coercion.

While I was the sole collector and transcriber of the data, my supervisor had access to the

51 data. I have acknowledged my personal biases later in this chapter and noted how these informed the analysis in the final chapter. I reviewed the risks and benefits of participating in the study with participants during the consent process and informed them that they had the right to withdraw from the study at any time without explanation and without consequence. During the data collection, participants were given the same level of respect.

Beneficence. "Two concepts are inherent" in the principle of beneficence: nonmaleficence, or the duty to do no physical or emotional harm; "and beneficence, or the duty to promote or do good" (Gillis & Jackson, 2002, pp. 331-332). This study was not intended to expose participants to any harm or risk. Although participation did not involve overt benefits, it allowed men's voices to be heard and assisted them in thinking about prostate cancer screening. This may or may not have assisted them to initiate discussion with their health care provider in order to be informed in their decision making. Since the research proposal was evaluated and approved prior to the interview process, beneficence was ensured.

Justice. The ethical principle of justice acknowledged that I treated participants fairly during the research process. I treated all participants equally and all data were collected and treated in the same manner. Confidentiality was respected by assigning participants fictitious names and data were kept in a secure locked filing cabinet to which

I have the only key. Written reports did not include any identifying information or participant names. All written and tape recorded information will be maintained in a locked filing cabinet in my office at St. Francis Xavier University School of Nursing for seven years, post publication of the study (as per Dalhousie University Policy on

52 Scholarly Integrity). I will be the only person to have access of the filing cabinet.

Information and all data will then be destroyed after seven years.

Trustworthiness. Quality research exists when research findings reflect the true state of the phenomena described and participants' realities are exclusively represented.

In order to evaluate the trustworthiness of data, researchers must provide sufficient detail in the research report. This will allow external auditors to confirm the trustworthiness of data and to reach conclusions about the truthfulness of the findings. Quality data is data that are believable, stable, and neutral. It is data that can be evaluated by external examiners to determine if they are applicable to other groups, settings, or contexts. When external examiners evaluate a research report, they are looking at the believability of the findings. I used strategies to ensure the quality of the research was preserved.

Trustworthiness of findings, as referred to by Lincoln and Guba (1985), is found within the principles of credibility, transferability, dependability, and confirmability. These four criteria allow external people to evaluate the trustworthiness of the research.

Credibility. "Credibility refers to the accuracy of the description of the phenomenon under investigation. The portrayal of the reality must faithfully be represented and plausible to those who have experienced that reality" (Gillis & Jackson,

2002, pp. 215-216).

According to Lincoln and Guba (1985), credibility includes techniques that increase the probability that credible findings will be produced. To ensure credibility, I had prolonged engagement with participants and persistent observation of participants during the data collection. This ensured that I gathered rich, descriptive data. Throughout the research process, the data were collected, transcribed verbatim, and reported with

53 accuracy. There was no falsity of data. Field notes were taken to record observations during the interview process. Peer debriefing and member checking were used. Peer debriefing provided an external confirmation of the data as my thesis supervisor agreed with my interpretations. As I returned to each participant for a second interview to perform member checking, data authenticity was confirmed. At this time, participants reviewed my interpretations of their stories. If participants provided further insights or disagreed with the analysis, their perspectives were integrated into the written research report. Member checking was a technique used to compare findings and interpretations with the participants and assisted in validating the research. Member checking is considered "the most crucial technique for establishing credibility" (Lincoln & Guba, p.

314).

Transferability. Transferability within research "is concerned with the generalizability or fittingness of the study findings to other settings, populations, and contexts" (Gillis & Jackson, 2002, p. 216). When a researcher assesses the transferability of the findings, there is a desire to show that they are not context bound (Gillis &

Jackson) and can be relevant to other settings and groups. There is a desire to show that the study findings are suitable and meaningful to others in comparable situations.

To enable researchers to assess the transferability of the findings, I provided rich and thorough descriptions of the research design, and of the findings in the form of themes. To ensure confidentiality, participants were described in sufficient detail without identifying characteristics and fictitious names were used. Through the provision of thick descriptive data in the research report, researchers will evaluate if the findings are applicable to other groups, settings, or contexts. Researchers can compare and contrast

54 previous research findings, explore the findings and themes of this study, and determine if similarities and differences exist.

Dependability. When assessing the dependability of qualitative research, the researcher looks at "the stability and the trackability of changes in the data over time and conditions" acknowledging "the reality that situations constantly change and people's realities differ" (Gillis & Jackson, 2002, p. 216). The researcher is "interested in determining the extent to which another investigator with similar methodological training, rapport with participants, and knowledge of the field would make the same observations" (Gillis & Jackson, p. 216).

One technique to assessing data dependability is to carry out an inquiry audit

(Loiselle, Profetto-McGrath, Polit, & Beck, 2004). An updated and systematic audit trail was kept to ensure that I had accurate documentation of all original data (audio tapes, transcripts, and observation notes), methods, data collection, interpretation and analysis, and any decisions which were made during the study. This allowed me and my supervisor to draw conclusions about the trustworthiness of the data. Finally, a research journal and all communication with the thesis supervisor and participants was kept.

Confirmability. The criterion for evaluating qualitative data is the confirmability, or "neutrality of the data" (Polit & Beck, 2004, p. 435), and is achieved as meanings which emerge from the data are tested for their believability Mid strength, so that "two independent researchers would agree about the meanings" which emerged from the data

(Gillis & Jackson, 2002, p. 216). Within this study, confirmability of the data was established by having the thesis supervisor read the data and by maintaining an audit trail to ensure there was agreement of meanings. In addition, following all the interviews, I

55 returned to each participant to ascertain and validate data interpretation. Confirmability of the data was assured in this process.

Locating Myself in the Research

It was essential for me to locate myself within my research as I had to recognize any presumptions, assumptions, biases, and questions I had prior to engaging in my research and throughout the research process. This helped to prevent me from misguiding the participants during the interviews and allowed participants to have their voices heard and accurately analyzed. According to Kahn (2000), the goal of the hermeneutic phenomenological researcher is to be able to report and document phenomena as they appear to be encountered rather than as the researcher would have them be.

Certain aspects of my life influenced my research focus. As a registered nurse, I have cared for many patients, and know multiple relatives and acquaintances diagnosed with prostate cancer who received treatment and maintain good health with a good prognosis. As I value discussion about screening, I would encourage men to discuss prostate cancer and screening with a health professional. Although I respect personal choice, I would prefer that everyone followed health promotion and illness prevention efforts. As a young woman in my 30s, I realize that this is not the case, especially with men, I was motivated to conduct research to explore a men's health issue of concern. I had many questions regarding screening for men who have never been screened. These included: Do men give much thought to prostate cancer and screening? Do men consider that prostate cancer can happen to them? Why are men unsuccessful at adopting recommended screening behaviors? Why do men shy away from seeking health care services while women are more apt to seek such services? Do men have the knowledge

56 needed to make an informed decision on screening? Are gender and masculinity barriers to adopting screening practices? Finally, as screening is a controversial health care topic, does this cause confusion for men and does it act as a barrier? To help men make an informed decision, I believe that health care professionals require more knowledge to better understand the perceptions and meanings of prostate cancer screening for men.

57 Chapter IV

Presentation and Discussion of Themes

Participants in this study articulated their perceptions and meanings of prostate cancer screening. Throughout data analyses, common themes emerged that represented the participants' meaning and understanding of screening. The three common themes that emerged from the analyses that illustrated the meanings of screening for the participants are discussed in the following chapter including: a silent topic, being a man, and lacking knowledge. Key pieces of data and relevant literature highlight and support each theme and sub-theme. Supporting exemplars from the men's stories further illustrate and explore the essence and understanding of what prostate cancer screening means for the men. Although depicted as three individual themes, there are some common characteristics of meanings among the themes.

The seven men who participated in this study shared stories that demonstrated their perceptions and meanings of prostate cancer screening. The majority of the men recognized and acknowledged that men had difficulty when discussing or contemplating screening due to a number of factors. Prostate cancer and screening were identified as silent topics, or topics that were rarely discussed with family, friends or colleagues.

Screening and prostate cancer were reported to trigger fear, nervousness, worry, embarrassment, and sensitivity among the men. Masculinity and being men and not women were identified as contributing factors in men's reluctance to discuss and participate in screening procedures. The DRE was also regarded as a dreaded examination. All of the men reported some bewilderment, and a lack of knowledge and awareness of prostate cancer, screening, and prevention.

58 A Silent Topic

A Silent Topic was a common theme among participants who identified that there was a silence that surrounded prostate cancer and screening. Participants believed most, if not all, men struggled when discussing and contemplating prostate cancer screening.

Embarrassment, nervousness, worry and being a man were identified as barriers to discussing prostate cancer screening. The following section illustrates the theme, A Silent

Topic and the implications this has for screening.

Participants discussed the notion that prostate cancer screening was very much a silent topic. They noted men's avoidance of any discussion about screening because it was perceived as a very personal, private, and a touchy subject. These men believed that men become very sensitive and embarrassed when discussing anything that had to do with the prostate, especially the DRE. As prostate cancer screening was persistently associated with the DRE, it was a shunned, forbidden, and stigmatized topic. The men believed that other men did not like discussing screening because they did not like discussing personal and private matters. Participant 4 said, "I don't think there are too many men that like talking about it. Nope. I guess it is not something men would discuss....Men do not like to talk about things like that." The men believed that while there were some men who would possibly discuss prostate cancer screening, most would be very silent about it. Participant 2 said, "well, like I said, you know perhaps some who would talk about 'er and uh, then some perhaps wouldn't want to hear it either."

Participant 1 said,

This is a topic which is hard for me to discuss I guess, it is a man thing... .1 guess not many men would talk about this topic....It is not a topic I would normally talk about to anyone. It is a quiet topic. Nobody seems to talk about it... .1 mean, it is still not an easy topic to go on about...As I said, men don't like to talk about these

59 things.. ..What man would talk about their personals?...I mean, who wants to talk or to think about, the finger, the rectal!...It is not something I would discuss, even now... .1 mean, there is not much talk about it at all. Nothing!"

Some participants noted that men struggled when discussing screening with anyone including physicians and women. Participant 6 said,

So that is why men don't want to talk about it... .Not to a woman anyway. Embarrassing to talk to my doctor about it.... It is something you really don't want to talk about. It's like, when you go out with a woman, you don't want to come back and tell the boys what you did. Some of us don't. Some of us brag, but some of us don't.. .a privacy issue.

This study revealed that participants did not like to think about, discuss, or be screened for prostate cancer. While fear of cancer prevented African American men between 35 to 70 years of age from discussing the topic (Allen, Kennedy, Wilson-Glover,

& Gilligan, 2007), there was no published literature that specifically reported men's reluctance to discuss prostate cancer screening. Evans et al. (2005) concluded that prostate cancer was considered to be a secrecy. They indicated that men do not generally discuss or understand prostate cancer. Among men predominantly 50 to 59 years of age arid some in their 60s, George and Fleming (2004) found prostate cancer screening to be a forbidden topic that was difficult to seek help in and discuss. It was a' taboo" subject.

Men in their study thought it was unacceptable to be open about health. Even the mention of the word 'cancer' was found to evoke a negative reaction in men. Among men between 45 to 69 years of age, Friedman, Corwin, Dominick, and Rose (2009) reported that cancer and prostate cancer were considered to be taboo topics that were not open for discussion. In a review of literature, Kunkel, Bakker, Myers, Oyesanmi, and Gomella

(2000) reported that cancers with sexual associations were stigmatized more than non- sexually associated cancers. As treatment for prostate cancer was found to be associated

60 with the side effects of impotence and incontinence, it was a stigmatized topic. The stigma of having prostate cancer and potentially impaired sexuality may prevent (Kunkel et al.) men from seeking screening and openly discussing these topics. Among men 40 to

70 years of age, Weinrich et al. (2000) found important barriers to participation in screening included embarrassment, fear, and being afraid of and refusing to go for screening. Seeking out health services was reported as not being "a man thing" among men 35 to 83 years of age (Griffith et al., 2007).

Some of the participants in the current study identified worry and fear as deterrents to discussion related to prostate cancer and screening. Men avoided discussions about prostate cancer and screening because it would cause them to be concerned about their own health. Men were afraid to have such a conversation because of prostate cancer's frightening presence. Some participants were adamant that they never wanted to even think about prostate cancer, cancers in general, or prostate cancer screening because that would cause them to worry about, and have real concern for, their health. Even though prostate cancer and other cancers were perceived as disturbing and nerve-racking diseases that they wanted to avoid, the 'out of sight, out of mind' approach was preferred.

Avoidance of seeing, thinking, and hearing about cancer made some men more comfortable with their health as it caused them less worry and fear. Participant 2 said,

You know, you know what, sometimes you know what? I close my eyes. If I see something on [television] and plug my ears. I would close my ears and eyes.. .1 guess it would worry me to go. I mean, I feel fine. I don't feel any different. [I would worry] if I was ill or had something real bad... .1 am scared.... You think about things when you get older... .1 am getting old. You start, you know, you start thinking, you know. Negative or some bloody thing or... .You know. I don't think about it... Too [scared], I don't know. Probably just scared, you know you think negative. A lot of men think like that [that they may find something]. If it showed up on the blood test maybe is it or something or; and he might say, 'I'd like to see you.' Then I would have to go! Either that or it could be cancerous.

61 And if they have to operate, you have no choice!...! hear about males and females you know. Cervical cancer whatever. I don't want to hear of that\ Well it bothers me, you know I think of women. Well like breast cancer and cervical cancer, and the prostate.... Well me, I don't want to hear about it. That's for damn sure!

Participant 7 spoke of the need to avoid any discussion about prostate cancer screening because of the possibility of a looming diagnosis. He said,

And stay away from it too. Like you don't want to fool, you don't want to get in trouble or something. And you know, it is just not, not put yourself in a hectic situation. Or scare yourself you know. Well, it would bring up, kind of bring up a situation you wouldn't want to get into. You know, just to stay away from it is fine with me.

The role of fear in prostate cancer and screening has been reported in previous research (Consedine et al., 2007; Dale, Bilir, Han, & Meltzer, 2005; Evans et al., 2005;

George & Fleming, 2004; Griffith et al., 2007; Hoffman & Gilliland, 1999; Myers et al.,

2000; Richardson et al., 2004). Myers et al. found men between 40 to 70 years of age avoided screening because of fatalism; they were worried testing would reveal their increased risk of being diagnosed with prostate cancer. George and Fleming reported that men in their 50s and 60s recognized they had feelings of fearfulness when thinking about cancer and difficulty in seeking help for their health. Fear has been found to deter men's discussion of cancer in men 35 to 70 years of age (Allen et al., 2007) while increased fear or worry has been shown to predict poorer prostate cancer screening according to a review of the literature (Dale et al.).

Increasing age has been shown to cause men to worry about having prostate cancer (George & Fleming, 2004; Ward et al., 1997). Men have identified age to be a risk factor for the disease (McFall, Hamm, & Volk, 2006). Participants in the study by George and Fleming were most comparable in age range to the current study. Their study sample consisted of men predominantly 50 to 59 years of age, and some men in their 60s were

62 also included. McFall et al. included men 40 to 70 years of age; and Ward et al. included men 40 to 80 years of age. The current study's findings were unique in that only one participant identified that age was a reason to be concerned. None of the other men discussed age as a risk factor, or source of, worry about developing prostate cancer or their overall health. This was interesting because most of the men in the current study were comparable in age to the men in the studies by George and Fleming, McFall et al., and Ward et al. As men age, they may avoid discussion and thoughts about prostate cancer and screening because they worry they are at an increased risk of having the disease.

The participants described prostate cancer and screening as forbidden topics that were rarely spoken of by men. Multiple barriers to discussion included men's privacy, sensitivity, fear, worry, nervousness, and embarrassment. A finding related to this theme that adds to the knowledge regarding prostate cancer screening includes that men do not equate age with the necessity for prostate cancer screening

Being a Man

The theme Being a Man was common among participants; it prevented them from discussing their health and especially prostate cancer screening. Screening was too personal and private to discuss with anyone, including their physicians or spouses, other men, or anyone, especially women. It was perceived as the most embarrassing subject.

Men did not like having any conversations about their 'privates' or 'personals.' The fact that prostate cancer screening involved the much dreaded DRE made it that much more difficult to discuss.

63 The following sections discuss the theme of Being a Man and the three sub- themes that fill out the essence of and provide meaning to this theme: Macho, Not a

Woman, and The Dreaded Finger.

Macho. Some participants noted masculinity to be a very important feature of being a 'healthy' and 'complete' man. The perception of good health fostered a sense of strength and manliness. Most of the men avoided contemplating screening or discussing screening because it interfered with their notion of being 'whole.' The prostate was symbolic of being a complete man. If the prostate was diseased, altered, or removed, it affected their manhood, strength, and youth. Participants noted that prostate cancer was associated with weakness and being 'broken' making men psychologically, sexually, and physically 'incomplete.' There was 'something wrong' with men who were diagnosed with the disease. When speaking of a healthy prostate, Participant 3 commented that men were hale, hearty, and complete if "it's not broken!" Participant 1 discussed how prostate cancer affected the wholeness of men:

It is saying that you just aren't right. Something is broke. You are not complete! [It is] threatening to all men. It can change everything. Change everything about being a man. You may even die. It is not a good thing to have. I have heard of some bad things. Well, that you, you, you aren't complete. Like you cannot get an erection. And you might wet yourself.

Participant 3 gave consideration to what a prostate cancer diagnosis meant:

I mean it is life changing of course, but I don't think it is a terrible thing. I mean it is a terrible thing, but I don't even know what happens. I don't know if it affects sexual.. .Psyche?....! don't think it affects the manliness of the person, of the man. If they have it removed, does it affect the sexual, hormonal?... If you remove the prostate obviously you are upsetting the train, the chain of what is going on. I don't know. Can you have sex?... I mean, who wants to give up their youth type of thing?"

64 While his true feelings were not totally captured in words due to embarrassment and shyness, Participant 6 depicted how prostate cancer affected men in general:

If you have cancer of the prostate... .There are other things that I really don't want to talk about in front of a woman. It is embarrassing really... .Anytime they feel something is wrong, something wrong with their sex drive or something, somewhere. Irregularities!... Well, when you got prostate trouble. It kind of knocks your whole body off kilter: your mind, your body. Very annoying!

The men believed there was no reason to be screened for prostate cancer or to see their physicians if they were pain-free, asymptomatic, and felt complete. Participant 2 said, "as long as there is no problem with my body health-wise... but if I had pains or something, I would go see my physician." If men felt healthy and lacked symptoms, there was no reason to go see their physician. Participant 3 discussed why he did not need to go for screening. He said,

I mean, I'm okay. I feel okay. Nothing down below... .1 never feel that there is any problem... .1 never have pain... .Well, I shy away from screening. You know you want to feel that you are complete. There is no need to go!

Some participants believed that most men only go to their physicians or the hospital when they were very ill or symptomatic. They thought men really had to be really under the weather to seek health care. Participant 4 said, "men don't like going to the doctor or to the hospital unless they are real sick." Participant 6 thought men ignored their health and did not listen to their bodies. They let symptoms go too far and ignored the early warning signs that something was wrong. They tended to wait until the symptoms were more advanced than they should have been. He said,

Men do not go to the doctor unless they are sick. Men don't like going to the doctor or to the hospital unless they are real sick. They let things go. They only go to the doctor when they are sick.

65 Chappie and Ziebland (2002) and Griffith et al. (2007) proposed that physical changes brought on by prostate cancer symptoms and side effects of treatment might have an effect on men's self-identity and masculinity. The study by Chappie and

Ziebland included men 50 years of age and older; the study by Griffith et al. included men 35 to 83 years of age. Evans et al. (2005) reported that the men in their study believed that prostate cancer was felt to weaken masculinity and men's quality of life.

George and Fleming (2004) reported when men's perceptions of masculinity are weakened so is their sense of independence, dominance, and stoicism. Ilic et al. (2005) reported that men 45 to 89 years of age traditionally viewed themselves as being physically strong. The thought of something being wrong with them, particularly with their reproductive organs, threatened their masculine image and caused them embarrassment. Griffith et al. reported that while men feared prostate cancer, they had major concerns about the sexual side effects of treatment and consequently their masculinity. Ilic et al. reported that men felt they did not need to be screened or visit their physicians if they felt complete and asymptomatic.

Some of the participants in this study mentioned that even though men never wanted to have prostate cancer, they did not want to discuss or participate in screening because of fear, bashfulness, embarrassment, and their need to be 'macho.' Their masculine integrity was important to them. Any discussion about or participation in screening could endanger and weaken their masculinity. Participant 6 said, "men are too proud to get tested, to go to the doctor" because "it is a man thing." Participant 1 said,

I guess men have the macho feeling to protect themselves... .We are supposed to be the strong ones. Well men are supposed to be stronger... .That men are macho in the sense that they have to be the strong ones. Having a disease or even getting

66 tested may make them weak in their eyes... .1 guess men have the macho feeling to protect themselves.

Participant 1 illustrated how the fear of illness caused men to avoid seeking health care services, especially prostate cancer screening:

[Men are] scared of going to the doctor... .Scared of anything to do with being sick... .1 just think they are scared of going into the doctor's office. That is the biggest worry!...More of them would be scared. Scared I think. Scared of the finger! Having the finger! It is a hard thing to go to a doctor's office and ask to be screened as it puts men in an uncomfortable position, especially for prostate cancer as it involves a doctor examining a man's rectum. It is not a fun thing to get done!

Maintaining self-respect was important to some participants. Participant 3 discussed how he did not want to go to his physician for screening because he did not want to bother anyone when he was apparently in great health. He thought he would be wasting his physician's time if he asked to have screening done. He felt he would be taking his physician's time away from other patients that were really sick who really needed their health looked after before he needed to be screened. He thought his physician would wonder if he was a 'worrywart' and 'silly' if he requested to be screened when he had no noticeable signs or symptoms of prostate cancer. He said,

It's just that I don't want to, and I don't want to sound noble or anything, but I don't want to be bothering anybody if I feel healthy. I know there is a load [workload] out there. I know there are waiting lists. I don't want to be like over- reactionary or a hypochondriac!.. .1 know that is probably wrong. I don't want to be lining up and 'I think I have this'... .Well, you tell me what you think, right?...It's like a noble process.. .why am I going to go get tested for and they are like 'what are you coming in for? You don't have a problem?

Participant 1 discussed how men who had lived healthy lives, who never had any signs or symptoms of illness, once they heard of their diagnosis, their lives seemed to go downhill in a negative way. This made men fear and avoid screening. He said,

67 It is a scary thing to go to a doctor because there is always a chance to find out you are really sick. It seems when people get notice that they are really sick, like if they have cancer, it is a death sentence in a lot of people. It hurts (...Sometimes it is better not to know than to know... .[because] it hurts them more than anyone can realize.

Similar findings have been reported in the literature. Courtenay (2000) and Evans et al. (2005) reported that gender and masculinity affects men's health. Evans et al. identified masculinity to be a significant factor in their avoidance of prostate cancer screening. Among men 45 to 89 years of age, Die et al. (2005) reported that men believed there was no reason to visit a doctor unless they were ill, and doing so was like flirting with danger increasing their chances of being diagnosed with prostate cancer. Griffith et al. (2007), Die et al., and Richardson et al. (2004) found men expressed their fears, concerns, and powerlessness about developing prostate cancer.

Although being shy would be inconsistent with their traditional masculine image, some participants often confessed to being bashful and timid especially when it came to such an emotionally and physically invasive screening examination as a DRE. Participant

3 emphasized that his "shyness" prevented him from discussing or initiating screening.

He said, "I am shy of doctors; like my dad was." Participant 1 said,

I mean, I am a guy and this is a guy thing. I guess I am a typical man. Stubborn. Shy. Scared... .We are a bad group. Boys will be boys. ...lama man, as I said. Shy. I guess not many men would talk about this topic.

Participant 1 commented on other reasons why he avoided any discussion about screening:

I did not want to talk about it though. It is embarrassing you know! This is a topic which is hard for me to discuss, I guess. It is a man thing. I guess it is hard on me because I am a man and I do not normally talk about this stuff, especially to a woman... .1 should not be such a chicken!.. .1 guess it may be harder to talk a lot about rectal examination... .1 guess I was nervous. Embarrassed! I mean, who wants to talk or think about, the finger, the rectal!"

68 While there were some men who carried out some health screening practices, others completely avoided them and avoided going for regular check-ups. Some men were reluctant to see their physicians because that was their character and what they were used to. Going to see their physicians was just not in their nature. Some men did not mind talking about their health, or going for screening, while other men were very unenthusiastic and unwilling. Participant 2 was an avid avoider of check-ups, screening, and any discussion about his health or the health of others. He went to see his physician

"once every two or four years" if something was wrong. He laughed as he recalled a conversation with his physician that confirmed he avoided going to the physician at all costs. During a very rare clinic visit, his physician reviewed his medical chart and remarked, 'well you know, you don't come here too often,' he chuckled and said, "well, no I don't... .Who wants to go too often?" He continued to discuss his views on going for check-ups:

I know some, I know some men, not talking about their prostates, but they love to go the doctors. They love going to doctors and they love going to the hospital! And you know, I am just 100% in a different way!

Participant 2 commented that men had no desire to have screening done or discuss it because they were fearful, "nervous, scared, and shy." He said,

You know what? We males are cowards!...but we don't want to see cancer neither! God no! Something about the prostate gland, I would get nervous. And I am just one of those, well you know us, males. You know, chicken... .Just afraid. Chickens!

The results of this study confirmed previous findings regarding the significance perceptions and meanings of masculinity on the men's decision to be screened for prostate cancer. Masculinity and men's social norms have been reported to be related to

69 men being uncomfortable to consult their doctor (Chappie & Ziebland, 2002), and to influence their screening behaviors (Courtenay, 2000; Evans et al., 2005; George &

Fleming, 2004; Griffith et al., 2007), healthcare interactions, understanding of prostate cancer screening, how they contemplated their well being (Ilic et al., 2005), and their discussions of prostate cancer and screening with others (Griffith et al.). Consistent with the present study, previous research has reported that men described themselves as being

'macho' when discussing their avoidance of health care services (Chan, Haynes,

O'Donnell, Bachino, & Vernon, 2003; Chappie & Ziebland; Griffith et al.). Evans et al. identified that masculinity influences avoidance of prostate cancer screening. Screening and the effects of being diagnosed with prostate cancer were found to be emasculating.

Men's reluctance in discussing health concerns (George & Fleming; Ilic et al.) and seeking healthcare services {Chappie & Ziebland; Courtenay; Griffith et al.) was identified as their way to protect their masculinity and avoid embarrassment (George &

Fleming). George and Fleming found men delayed seeking help because of their perceived masculine role which leads them to consider help-seeking and discussing health matters as difficult, sometimes foreign and unmanly. In particular, prostate cancer screening was regarded as an unwelcome violation of manhood, a threat to male sexuality and masculinity among men 35 to 70 years of age (Allen et al., 2007). Consedine et al.

(2007) reported that men 40 to 70 years of age had a fear of emasculation while George and Fleming found fear affected men's adoption of health promoting behavior for men in their 50s and 60s. In particular, greater fear predicted lower screening usage of DRE and

PSA testing (Consedine et al.). Finding shyness as a barrier to screening has not been reported elsewhere.

70 Not a woman. The men expressed how the differences between being a man versus being a woman affected screening. Throughout their narratives, the men were certain that men and women radically differed in regards to their perceived health, health attitudes, and health seeking behaviors.

Most participants believed that there were not many men who were comfortable or who enjoyed discussing their health, especially prostate cancer screening. Screening was not a typical topic men would ever discuss. Participants believed men and women were

'not the same.' Men were noted to be reluctant speaking about issues that were regarded as private and personal. Women, they reported, did not mind discussing private and personal matters. Women were far more comfortable discussing their health and having testing done. Women tended to go for check-ups for any reason while men tended to avoid check-ups at all costs unless they were really under the weather. Participant 4 said,

I don't think there are too many men that like talking about it. I guess it is not something men would discuss. It is just a man thing I guess. Men do not like to talk about things like that. Women are different than men. Women feel more comfortable talking about health problems. They seem to go to the doctor more than we do. Men don't like going to the doctor or to the hospital unless they are real sick.

Participant 1 thought that women were "not the same" because whereas women never seemed to avoid going for check-ups even for very private reasons, men avoided having any kind of check-up. He said,

Women seem to go to the doctor more and find it easier to go, even for the more personal examinations such as a female test. My ex-wife and daughter never mind going to the doctor for any reason [because] women are different. Well, I think they go to doctors more often. We are just, just afraid. Chickens, I guess! We don't go to the doctors unless we are really sick. My son and I would only go to the doctor if we had something wrong with us.

71 Some participants perceived women to be the superior and stronger gender.

Women were described as being far more superior when it came to being responsible for their health and going to physicians. The participants believed that women never feared or minded going for check-ups, men were the polar opposite. Men were regarded as being cowardly, reluctant, and apprehensive when it came to their health. Participant 2 said that men did not like going to their physicians because they were "chicken" and "cowards."

He commented that while men avoided the health care system like the plague, they still

"didn't want to see cancer neither." He highlighted his distinctions between women and men:

Well, women are braver. I mean, they are braver. I mean as far as having babies, and going through labor and pains!...You know women go for pap tests... Women are used to going for tests, like going for pap tests or anything!

Participant 3 spoke of the differences between himself and the females in his own family. He commented that the women and girls in his family routinely go for their yearly examinations. He discussed his desire to be more like them in this regard. Going for regular physical examinations was a practice he wanted to get into doing as well, including prostate cancer screening. He felt he was very unwise avoiding routine check- ups, especially since he was surrounded by women and girls who never avoided them. He discussed that the women and girls had to look after embarrassing and sensitive "issues" but he still could not get into going to appointments to take proper care of his own health.

He felt he was smarter than that because he "knew better." He knew he "should go" for routine check-ups, but he just could not get into the routine even if check-ups meant protecting his health. He felt very foolish, remorseful, guilty, and cowardly because of

72 this. He knew it was a health practice that was long overdue. He felt screening was like 'a black cloud' hanging over his head. It was an everyday reminder. He said,

I am stupid!...It's time!...Oh it is definitely hanging over my head. They (females) have their issues.. .1 know females go through pap smears and all that. It is an ongoing thing. It is just one of those routines that you have to get into!

Even though Participant 3 expressed that he wanted to get screened, he was still not sure if he could or would go through with it or when. When asked if he thought he would be more comfortable going regularly after his initial screening, he was very quick to respond. He was adamant that if he did get screened, it would be a one-time thing.

Once was definitely enough for him because it was such a nerve-racking and embarrassing thing to have done. He said,

No! I'd say that is it! No more! It is not something I would do every year. No way! Just one time, one time it will be! You'd have to pay me to go again. It is a good start right? It is a start!

One participant reported that the physical environment of buildings that were healthcare-related, such as hospitals and physicians' offices, caused some men to become uneasy and uncomfortable. He noted that men loathed going to see physicians when they had health concerns. Some men even avoided seeing physicians when they had health concerns. While most men were reluctant to enter hospitals even to visit family and friends, women were regarded as being far more comfortable and willing to be in healthcare settings. Participant 1 said,

Men, men. They go when they have a problem. They don't even go when there is a problem. Men are not the same. We avoid going anywhere like that. We hate, I hate going to the doctor, I hate going to the hospital. I mean, it is even hard to be in a hospital to visit. It is just not a guy thing!

Previous literature supports the findings from the present study. George and

Fleming (2004) found that while men reported wanting greater surveillance for the early

73 signs of cancer, they experienced social and psychosocial barriers to help-seeking including embarrassment, fear, guilt, and a threat to masculinity. Seeking out health services Was not seen as a 'male thing' among men 35 to 83 years of age (Griffith et al.,

2007). While women were more commonly recognized to seek out health services and discuss their health (Chappie & Ziebland, 2002; Cherry, Burt, & Woodwell, 2001), men were reported to have limited encounters with the health care system (Cherry et al.), to be reluctant to consult physicians (Chan et al., 2003; Griffith et al.), and to seek health care services only when they were ill (Chappie & Ziebland; Griffith et al.). Lemon, Zapka, and Puleo (2005) found the prevalence of comprehensive cancer screening was low, particularly among men 50 to 74 years of age. While the current study was different because participants were Caucasian, earlier research reported that men felt seeking preventive health services was uncommon (Griffith et al.)

Participants noted that being a man caused men to be stubborn, shy, and scared when it came to learning about, and discussing, prostate cancer screening. Men were perceived to be in a league of their own in that they did not like to discuss anything to do with their health, especially screening. The men reported that one of the major differences between men and women was in their communication style and this affected men's ability to discuss screening. While men would remain silent and closed-off, women would continue to be more communicative and talkative. Women were more relaxed when it came to conversations about their health regardless of the topic. Men were the tense ones; women were more at ease. Participant 1 sad, "women can talk about anything better than a guy can. Women like to talk, men don't. Maybe we should be more open, but I can't see that happening." Participant 5 said,

74 However they are probably not going to change too much at this point although some may. Some may turn it around totally and be totally repressed and not able to talk about it at all. And then all of a sudden just and maybe not even all of a sudden, may be gradually.

Participant 5 reflected that some men avoided screening and discussion about their health because it was felt to alter their masculine image and project the feminine. He felt men who placed less emphasis on their masculinity would be more open to screening as they were more comfortable with themselves as men. He acknowledged but rejected the need for men to portray a masculine attitude. He said,

I think my sensitive feminine side is pretty much balanced. I am not into that machismo thing... .1 don't hold the water. I don't have a lot of faith in the machismo thing. Like guys that try to prove got to prove something to somebody else by being deceptive.

Consistent with ideas of masculinity and their identities as men, previous research and literature has reported men's awareness of gender distinctions in health seeking behaviors (Courtenay, 2000; Dube, Fuller, Rosen, Fagan, & O'Donnell, 2005; George &

Fleming, 2004; Griffith et al., 2007), health-related knowledge (Dube et al.), and beliefs and discussion about health (George & Fleming). According to George and Fleming, since being concerned about health or being healthy was perceived as a feminine characteristic by men in their 50s and 60s, men may feel vulnerable and threatened when thinking and talking about health. Participants in the current study noted men's inability to communicate which was supported by Hedestig et al. (2005) who found men 61 to 69 years of age never initiated discussion about their problems, worries, or thoughts, and were unwilling to talk about their emotions and thoughts.

The Dreaded Finger. "The finger" was notoriously branded as the most dreaded and unpleasant healthcare procedure both in concept and in reality. This method of

75 screening was described as uncomfortable, distressing, and embarrassing. These were acknowledged deterrents to screening. Most of the men in the current study feared and were appalled at the notion of a physician examining their rectum. The DRE was described as unpleasant and an invasion of men's emotional and physical privacy. Even the mere topic of a DRE triggered unpleasant reactions among most participants.

Whether or not participants had a DRE in the past, any conversation about this procedure caused them to become embarrassed when thinking about, discussing, considering having done, or remembering having it done. Participant 3 laughingly said "who would?" want and "who would?" be keen on having a DRE done. Participant 1 said he was

"embarrassed" to discuss the DRE. He said, "I mean, who wants to talk or think about, the finger, the rectal!" The mere thought of "the finger" triggered him to make gestures in the air with his finger, laugh nervously, and have a tense expression on his face while discussing it. This painted an obvious picture of how difficult and sensitive the topic and the examination actually were. He said,

I am a man, as I said, shy. I guess not many men would talk about this topic. Well, I was nervous at first. It is not a topic I would normally talk about to anyone. It is a quiet topic. Nobody seems to talk about it....As I said, men don't like to talk about these things.

Although Participant 6 had a DRE examination performed before, he still squirmed when thinking of it because it was such an uncomfortable examination in the emotional and physical sense. He appeared uneasy when he said the examination "the rectal exam puts you on your toes, on your toenails. And if you have seen (urologist's), his fingers are that big!"

Participant 1 stressed that men do not like being put into uncomfortable situations especially when it came to their health. He said men were "scared of the finger! Having

76 the finger! Scared of the rectal" and that is why they avoided screening. When reflecting about his experience with the examination, he emphasized that there was nothing more awkward and personally challenging than having a DRE. He said,

Who wants to do that? It is a hard thing to go to a doctor's office and ask to be screened as it puts men in an uncomfortable position, especially for prostate cancer as it involves a doctor examining a man's rectum. It is not a fan thing to get done! I definitely would not ask for it. No way! It is not a fun thing to have done to you at all. Hell no way!

Participant 4 believed men avoided having prostate cancer screening done because

"it is a man thing." He felt he was like most men in that he was too "shy" to have such a personal examination done. Even though he wanted to get screened, he was unsure about having a DRE done. He hesitantly said, "I would, I would probably want to be screened. I mean starting with the PSA" because that was the easier of the two and less dreadful and embarrassing.

One participant discussed how society has influenced men to become sensitive and uncomfortable discussing or contemplating prostate cancer screening, especially because of its association to the DRE. The majority of participants expressed that men avoided having screening done due to the sensitive and the private nature of a DRE. They felt that men did not like to talk about anything to do with their prostates or rectal areas.

These body parts were not open for discussion or inspection. Participant 5 said, "I think people's arseholes are a sensitive topic for the most part... .1 mean Aye keep them covered for 99% of the day." He illustrated his notion that men were sensitive to the DRE because it was considered a 'dirty' examination:

I would guess not real comfortable. I would say sociologically I think we are brought up with thinking that anything that has to do with the bum or the rectum or the bowels is like 'don't talk about it.' It is dirty. People think it is dirty because of what society is like. They just don't like to talk about stuff like that.

77 Too private I guess especially for men. But when it comes to sexual.. .that is a very sensitive and a very sensitive part of the body for everybody.. .People either tighten up and say don't go anywhere near that or relax and go 'oh that is interesting. Would you put a little oil on your middle finger first please?'

The current study extends earlier research that reported men were reluctant to discuss health issues (Friedman et al., 2009; Weinrich et al., 2000). Richardson et al.

(2004) reported that men's massive fear of the actual prostate cancer screening procedures was a barrier to prostate health decisions and behaviors for men 33 to 47 years of age. Physical discomfort (Clarke-Tasker & Wade, 2002; Evans et al., 2005;

Myers et al., 1999) and fear and/or embarrassment were associated with a DRE (Chan et al., 2003; Clarke-Tasker & Wade; Evans et al.; McCoy et al., 1995; Myers et al., 1996;

Robinson et al., 1996). Consedine et al. (2007) also found the DRE was a source of elevated embarrassment, discomfort, and anxiety for men 40 to 70 years of age.

The cultural aversion to the DRE was noted in the literature. Similar to the men in this study, Chan et al. (2003) and Richardson et al. (2004) reported that men referred to prostate cancer screening as 'the finger' or 'the finger test' and cringed and grimaced at the thought of a DRE. Reynolds (2008) conducted a literature review and found while there was a cultural aversion to screening and in particular the DRE, it was a less cited barrier to prostate cancer screening. Allen et al. (2007), Chan et al., and Richardson et al. reported that men associate having a DRE performed with a homosexual act. They studied men 35 to 70 years of age, 50 years of age and older, and 33 to 47 years of age, respectively. Allen et al. reported that men believed that prostate cancer screening, especially the DRE, was a violation of masculinity. Chan et al. reported that men in their study reported that the DRE compromised their masculinity because it involved inserting a foreign object such as a finger into their rectum. They reported fear and embarrassment

78 were associated with the act of a DRE because it was associated with a homosexual act and therefore forbidden. Richardson et al. reported that men in their study perceived the

DRE as being uncomfortable. Any notion of anyone, including a physician, performing a

DRE was perceived as sexual in nature. Similarly, the men in this study reported that prostate cancer screening was associated with the DRE. Although none of the participants expressed homophobia their words and expressed feelings did. Their aversion to DRE was similar to being penetrated Mid invaded which was perceived as a threat to their masculinity. They perceived the DRE as an unwelcome penetration and violation of their bodies. Their perceptions and meanings of the DRE were found to be similar to an attack on their masculinity and being a man. The sexual connection to the DRE was evidenced in the present study by the last two quotes.

Some participants commented on the importance of having good relationships with physicians when it involved their health and having screening done, especially prostate cancer screening. They reported their need to feel comfortable when interacting with their physicians when it involved discussion of, and examination for, any health concern, especially sensitive health concerns. When trusting relationships between men and health care professionals are established, this may alleviate some of the concerns associated with talking about, and performing, such a sensitive examination as the DRE.

Participant 1 said, "I need to be able to speak to her for sure. If I was not comfortable with her or if I did not like her, I would not talk to her." Because having a DRE was regarded as a much dreaded and very intimate examination, it needed to be very respectfully and professionally performed. If men did not feel comfortable with the physician who was performing the examination, this would deter men from having it

79 done. Participant 5 said "you've got to trust somebody fairly reasonable to bend over and have them put a glove and dig as deep as they can and noodle around to see if there is any spare change in there."

Previous research has shown that men's views of health services and relationships with their physician have important implications for the early detection of prostate cancer

(George & Fleming, 2004). Cormier et al. (2003) identified factors associated with prostate cancer screening behavior in men 40 to 70 years of age who had a first-degree relative diagnosed with prostate cancer. Results indicated that patient-physician discussion about prostate cancer screening was positively associated with the men being screened for prostate cancer.

As previously mentioned, the lack of discussion about prostate cancer screening was evident in all the men's stories. Prostate cancer screening was a topic that men did not discuss openly. Discussing prostate cancer screening evoked a common and instinctual nervous reaction among participants. All of them nervously laughed at, flinched at the thought of, and made fun of prostate cancer screening. Humor was recognized to be an effective communication strategy that helped the men become more comfortable when such a private and sensitive topic and examination was mentioned and discussed.

Participant 3 recalled the one-time conversation he had with other men about screening. He commented that when he and the other men spoke of screening, especially the DRE, they definitely did "make light of it" by "joking about it." He said "joking around about it," laughing, jesting, and poking fun were behaviors that all men regularly used. This was felt to help lighten the mood, "make light of' this touchy subject matter,

80 and take some of the pressure off such a sensitive topic when and if the topic ever arose in their day-to-day lives. This helped to alleviate some of their nervous tension and uncomfortable and feared images of screening, especially the DRE. This helped men feel a bit more comfortable when thinking about and discussing the topic.

Nervously laughing when he recalled the time his friend told him about a DRE he once had, Participant 2 said, "but he had, he went up his rectum... He said when he came back, 'Jeez, I got a sore arsehole!'...God bless him, he said, 'my arse was sore'... .But anyway, they got to feel around in there... .for a swollen prostate." While he laughed and gestured with his index finger, he said he would never get an examination that involved

"poking around" and "sticking it up your rectum" because "it's [just] not funny!"

Similar findings have identified the use of humor as a strategy used to dilute men's embarrassment or divert attention away from sensitive issues (Allen et al, 2007;

George & Fleming, 2004; Oliffe & Thome, 2007). Allen et al. found that men 35 to 70 years of age joked about the distastefiilness and discomfort of the DRE.

The idea of gendered social norms was found to influence participants' meanings and perceptions of prostate cancer screening. Feelings of masculinity and their image of being men affected how men sought and viewed health care services and screening. The participants perceived a clear differentiation between men and women in their communication style and health behaviors and attitudes. The DRE was identified as a deterrent to screening. It was considered to be a dreaded health care procedure and one that is emotionally and physically multifaceted for men.

81 Findings illuminated by this theme that add to the prostate screening literature include: screening was not necessary when men felt complete and asymptomatic, shyness was a barrier to screening, and these men perceived women to be the stronger gender.

Lacking Knowledge

The theme Lacking Knowledge was common among participants. Participants understood very little about the prostate cancer screening approaches to the detection and prevention of prostate cancer, and believed that symptoms of some sort needed to be present to contemplate the notion of screening.

Screening. While the current study was designed to include only men who had not been screened for prostate cancer, some of the participants may have been screened.

During the interviews, it became apparent that four of the men may have been screened.

Two were possibly screened without having any understanding of what was done and why. Another lacked knowledge of PSA testing. He assumed he was 'fully' screened by having a DRE. While the fourth was aware that he had been screened, he was confused by the terminology of my recruitment advertisement and script. Three participants reported that they had never been screened for prostate cancer.

Whether or not participants had previous DRE and/or PSA testing completed, they all lacked an adequate understanding of these tests. Some participants knew the DRE involved 'the finger' being inserted into the rectum to check for some sort of abnormality, but some did not. While a few participants had some awareness of PSA testing, they were not knowledgeable about its significance. Participant 1 had a DRE in the past, yet he knew little about the procedure. His comments illustrated his lack of knowledge:

82 Not too much because you go to your doctor and he gives you a physical examination with his finger and that is all I know. Well he puts it, his finger, up your rectum to see if there are any bumps up there. Something like that.

Although Participant 3 had heard of the DRE and vaguely knew how it was done, he had uncertainty about the procedure. He was unaware that it was a screening tool used in the detection of prostate cancer. He thought a DRE was done to detect colon health concerns, such as colon cancer. He was also unaware of and surprised by the prostate's proximity to the rectum. He said,

I know that other than basically about how it's done. I didn't really know that they checked for prostate. I thought it was more for colon... .It is pushing into the rectum? Into the colon?...Is it like the physical...the finger? And then (gesturing with his hand and finger)? Is it that close to the rectum? Wow! And it is right there?...So there is no helpful or whatever or like camera after? That would be for colon.

Participants noted there was a lack of discussion about prostate cancer screening with physicians. Physicians never discussed screening with the men in any detail, if at all, even when the men had a DRE done. Participant 1 said,

I just let the doctor do her work. She didn't, she didn't say too much. We did discuss it. I think it is good to do it every year, after you reach the age of 45.1 think that is what she said. I should, I haven't been doing it, but I should be doing it every year.

Most participants were completely unaware of PSA testing as a screening tool for prostate cancer. When discussing screening, Participant 2 questioned, "can they detect it by blood test?" Participant 1 had never heard of PSA testing, which was a significant finding because he assumed he was fully tested for prostate cancer by merely having a

DRE done. He thought he had sufficient discussion about prostate cancer screening with his physician when she had performed the DRE. Upon explanation of PSA testing, he

83 was both surprised and pleased to learn there was another test for the detection of prostate cancer. He said,

I knew it [the DRE] was a test for prostate cancer... Well it is great to know about the blood test. I never knew. I think it is important to have both tests together. I will bring it up with my doctor for sure. I thought I knew all I had to know... No, not until you told me. That is great. I guess they should be done together. It is better to have two tests than the one test: the finger test.

While Participant 3 initially heard about PSA testing through a friend, he did not know it was specific to prostate cancer. He believed PSA testing could detect high blood glucose, and red and white blood cell levels. He also questioned if PSA testing could detect other health conditions that caused abnormal blood glucose and blood cell counts. He said,

The first time I heard of it was through a mutual friend... A male friend. My age... .Other than the antigen... Can I ask? Does the screening? Now when you do a blood test that could be a component of it, right? You could have a blood, a blood test can find other, other things too, right? It's not specific to prostate cancer... .But it could tell you again if your sugars were up, and you know, you know, like white and blood, white and red and all that? The PSA test? If they were testing for the antigen let's say, could they recognize if I had problems... .1 am trying to shop here for the whole deal like.

Previous literature has identified men's lack of knowledge about prostate cancer screening. Consistent with the findings of this study, research has found that men lacked knowledge regarding PSA screening (Demark-Wahnefried et al., 1995; Diefenbach,

Ganz, Pawlow, & Guthrie, 1996; Ilic et al., 2005; McFall et al., 2006; Richardson et al.,

2004; Steele, Miller, Maylahn, Uhler, & Baker, 2000; Ward et al., 1997). Research to date including this study has found that while most men had heard of the DRE, they were not entirely sure of what the examination involved, or the exact location of the prostate

(Allen et al., 2007; Richardson et al ). Contrary to these findings was a study by McFall et al. who reported that the majority of their study's participants who were between 40 and 70 years of age knew screening involved DRE and PSA testing. Without specifying

84 where or how these participants gained this knowledge, they indicated that a few participants had heard about PSA testing in the study's focus groups.

Participants 4 and 6 had urinary symptoms in the past and therefore may have received prostate cancer screening. Both had seen the same urologist for these symptoms and had a DRE completed and may have had PSA testing. It seems that these men participated in screening without their full knowledge and did not understand what prostate cancer screening included. Participant 4 had never even heard of PSA or DRE testing. Recalling his appointment, testing, and discussion with his physician and urologist, he said,

No I have never heard about this [PSA testing] at all... .No. I have never heard of this [DRE testing] either... .No, I don't think I was screened at all. No, no [I was not screened]... .1 had some tests done before in the hospital. They just told me everything was okay... .1 really do not remember.... I do not know what for... .1 should know, but I don't... .1 guess I never discussed it with him, with my doctor. I believed they did [take some blood work], I guess they did but I don't know anything at all... .1 think he may have taken a biopsy but I am not sure at all... .He (urologist) just checked me out and said everything was okay. He did not talk about prostate cancer screening or prostate cancer at all... My doctor just sent me. I really do not know why I went to see this doctor.

Participant 6 said,

Well, if I knew what screening was?... Well he checked my blood. So if that is screening?...I have had a lot of tests. I do not know what they were. I did not ask. I had a blood test a month ago. It was for prostate. He said the count was one. The level is one. And the doctor said that the level was perfect. Perfect for my age... .That is what he said. It was perfect. He said it was perfect. I still have the burning though... .So, he told me that even before he even had the blood work that there was nothing at all. That it could be just an infection because he checked out the prostate and he said that is usually rough.

Among men 45 to 89 years of age, Die et al. (2005) reported a lack of knowledge, poor patient-doctor communication and poor access to health information contributed to poor understanding of prostate cancer screening among men who were and were not

85 screened for the disease. Consistent with this study, previous research reported that men participated in prostate cancer screening without their full knowledge. In a National

Health Interview Survey, approximately one-third of men 40 years and older reported their physicians did not discuss prostate cancer screening with them prior to screening

(Han, Coates, Uhler, & Breen, 2006). In a study by Diefenbach et al. (1996), over half of the men had not heard of and were unaware they received PSA testing. Dube et al. (2005) found some men 40 to 79 years of age remained confused about PSA testing after medical appointments that included discussion about PSA testing and desired to find out more. It was possible that men may not recall information about screening or their providers failed to inform them that they were being screened for cancer (Diefenbach et al.). While participants from the current study never commented on or complained about their physicians' lack of discussion with them, earlier research differed. McFall, et al.

(2006) reported participants 40 to 70 years of age viewed physicians as being unwilling and too busy to provide explanations. Dube et al. found that men complained about physicians' lack of explanations during physical examinations and lack of appropriate prostate cancer screening.

Although this study did not explore physician communication and their discussion of screening with patients, previous research provides insight related to this issue.

Physicians reported they often do not discuss cancer screening tests with their patients

(Dunn, Shridharani, Lou, Bernstein, & Horowitz, 2001). They found that 16% to 34% of physicians reported not discussing screening tests with their patients and approximately one-third of physicians reported they did not discuss PSA screening in particular. In another study, six out of 18 physicians reported they sometimes conduct prostate cancer

86 screening without discussing it with their patients (Guerra, Jacobs, Holmes, & Shea,

2007).

Knowing about others diagnosed with prostate cancer did not enhance participants' knowledge. Participant 4 had a brother-in-law diagnosed with the disease and still lacked knowledge about screening. He said,

I know really know nothing at all about prostate cancer screening. Really nothing at all! My brother-in-law actually just got diagnosed with prostate cancer last week....I guess he [my brother-in-law] just told me that he had prostate cancer. I guess I do not know much about it... .He needs to go for more testing actually but I am not sure what this involves. He is going to get a needle or something. Whatever it is, it is $1500 for each needle or something like that. I am not really sure. He needs two or three of these actually. I think the Cancer Society helps him with this though. We know a woman in (a nearby community) who got help from the Cancer society....[I know] just what my brother-in-law has told me. That is all I knOw but I guess he did not tell me details about how he was tested. Just that he has prostate cancer.

Even though Participant 7's relatives and neighbor were diagnosed with, and treated for, prostate cancer, and he was aware of prostate cancer to some extent, he lacked knowledge about prostate cancer. His comments illustrated his awareness of and lack of knowledge about prostate cancer and screening:

No, I have heard nothing... .it is really quiet... I mean mom told me and 1,1 wouldn't have known unless they told me so....So we must be getting somewhere... .It is never brought up. Mom was talking to me about it and that was as far as it went. I think (uncle) had it first and then (uncle) got it It is kept kind of quiet.... It's not, it's not something that is brought up....I haven't heard too many more issues about it or people getting it... .They healed that and they seem to doing alright.. .And it didn't, it didn't matter too much to me. I mean, they got better so... .Like you don't hear of it anymore so. All the men were dying on the women out in [the neighborhood]... We are in a better situation over it.

Similar findings were reported by Ilic et al. (2005) who found men 45 to 89 years of age with family members or friends diagnosed with prostate cancer reported an increased awareness about prostate cancer, but not an increase in knowledge.

87 Participant 3 thought that men lacked knowledge about and awareness of prostate cancer and screening because they were not as ' in your face' as other cancers were, such as breast cancer. He raised the issue of how the media influences the education and awareness of breast cancer and screening, but not prostate cancer and screening. He also thought that men assumed that if they were not having any problems, they were healthy.

There was nothing to "fix." He emphasized his views on men's lack of education and awareness:

I don't think a lot of people don't know about it. Honestly, I mean there is ignorant and I don't mean, and I don't mean ignorant, ignorant. It is just ignorance of (prostate cancer and prostate cancer testing)... .They don't know and you don't see it! It's not there and it's not broken!...I mean we are in rural Nova Scotia, but I'd still tend to think people don't like to talk about it. They don't want to know...it's not there in your face....It's not like a toothache or anything.. .It is definitely (lack of) education! You know, like now breast cancer or has been for years. Or has been a big deal....And traditionally... .It's just slow learning (laughing a bit).

Consistent with Participant 3's views, previous research has reported that while there is a familiarity with women's cancer screening (Dube et al., 2005), there is minimal public awareness of prostate cancer (Barber et al., 1998). The literature has reported that prostate cancer screening behaviors were not associated with rural or urban place of residence (Pinnock et al., 1998; Satia & Galanko, 2007). George and Fleming (2004), Ilic et al. (2005), and McFall et al. (2006) reported that men emphasized the distinction between screening for prostate cancer and screening in women's health. Men felt there was more awareness of women's health. Breast cancer was considered to be the more important issue mostly because of its vast media attention (George & Fleming). Contrary to findings by Ilic et al., men in the current study did not express frustration that men's and women's health issues do not have the same level of public awareness.

88 The ongoing controversy on screening and the lack of established, agreed upon screening guidelines may contribute to a lack of awareness and knowledge about screening. While prostate cancer screening remains a topic of widespread debate

(Pinnock et al., 1998), the majority of participants in the current study might have been unaware of this controversy with the exception of Participant 5. He was the only participant to briefly mention the controversy surrounding PSA efficacy when he said,

"PSA Used to be the benchmark but there is a little question over it now. But still it is better to do it."

While previous research is lacking regarding men's awareness of and knowledge about the controversy, Allen et al. (2007) and McFall et al. (2006) reported men 35 to 70 years of age, and 40 to 70 years of age, respectively, had insufficient information about and awareness of the controversy. The current study's finding can be compared to Dube et al. (2005) and McFall et al. who found that a few men in their study had heard of the limitations of PSA testing. The study by Dube et al. included men 40 to 79 years of age.

Prevention. While this study did not intend to assess participants' knowledge of prostate cancer prevention, some of the men reflected on their perceptions of prevention as they discussed prostate cancer and screening. The men lacked knowledge about prostate cancer prevention. They never considered whether the disease was preventable.

Participant 2 was unaware of how prostate cancer could be prevented, but thought a healthy diet and annual DREs were important. He said,

Probably by your diet. I am not sure what else. Maybe just like well check-ups. Once a year or something. Your doctor.. .would feel around my prostate... .1 don't know. Well, go see your doctor....(You'd) have to go to doctors. You know, male and female [doctors]... .1 don't know.

89 Participant 7 was unsure of what prostate cancer actually was and lacked knowledge of preventive strategies. He questioned if the disease was caused by a foreign microorganism or toxin invading the body or the lack of exercise. He said,

What is it anyways? Is it a worm, a bacteria, a poison, or what is it?...I am not sure how it's made? I'm not sure, I'm not sure what they're, they're. If they're not exercising enough or how it's caused!

Participant 7 also speculated that men should stop cigarette smoking and avoid alcohol if they wanted to prevent prostate cancer. He said,

Well they'd have to try to live right or something. I don't know if it deals with alcohol or not. I'm not sure. I'm not sure cause those fellas, might be drinking lot. You know. You never know... .1 don't know... Quit smoking and stuff.

Two participants noted the prostate's connection to sexual performance.

Participant 5 thought an active sexual life was important to prostate health and prostate cancer prevention. He was aware the prostate was important to the production of seminal fluid, but thought the prostate was dependent upon continued sexual functioning in order for it to be healthy. Sexual activity was a way to prevent prostate cancer; if men did not have sex, they were increasing their chances of developing the disease He said,

I think I was aware fairly early on.. .that more ejaculation equals healthy prostate... .1 think that I came to the realization that there was direct correlation with a man having sufficient orgasms over a period of time as opposed to not. And that being healthier for the prostate and I came to that on my own. That realization... .It is just like the old use it or lose it. For it to be healthier for the prostate... .men will get prostate cancer from having too little sex if they don't ejaculate often enough... .1 say it definitely is healthy. I mean because it produces semen so you would think. If you don't use it, you lose it.

Participant 3 thought the prostate was important for sexual health, but it did not matter if men were sexually active or not. He did not pay attention to the need to follow the saying

'use it or lose it' when it came to men's sexual health. He believed there was no

90 connection between diet and prostate cancer or sexual behavior and prostate cancer, but believed genetics played a role. He said,

How it can be prevented? I didn't know it could be. I wouldn't think it would be diet. I don't know. I thought it would be more of how we are, our [genetic] makeup....1 didn't think it would be preventable....But behavior wouldn't, you know. With behavior, be it sexual behavior, it shouldn't interfere. Interfere with... .Keeping things flowing (with a smile). Because it is only part of it. Part of the scenario, right? And the sperm right. No, I don't believe so. I don't think, this is blunt, I don't think you have to be flushed. I don't know but I don't think so. You know a kid can have a wet dream. You know, I mean, that is really, maybe that is really important, I don't know. Maybe that has other idea, implications but like. I don't think it is holding the dam. Like you know. I don't think we were made up that way. It is like if you were breastfeeding. Is it is like if you have breast cancer, is it because you didn't breastfeed? I don't know.

Allen et al. (2007) reported that men 35 to 70 years of age felt they were not given information about preventive health, especially prostate cancer prevention. Research to date has reported men lacked knowledge regarding the function of the prostate and the risk factors for prostate cancer such as smoking, alcohol consumption, multiple sexual partners, diet, exercise, and genetic predisposition (Allen et al.; Chan et al., 2003; Ilic et al., 2005; McFall et al., 2006). Richardson et al. (2004) reported lack of knowledge was a barrier to prostate health decisions and behaviors in men 33 to 47 years of age. Consistent with this study, Richardson et al. reported men were certain of the prostate's connection to sexual performance, with some participants reporting the necessity of regular sexual activity and others not (McFall et al.).

Focusing on Symptoms. Participants were uncertain how men became diagnosed with prostate cancer. They were unaware the disease could be present in asymptomatic men. Symptoms were associated with the disease and since participants did not have symptoms, they felt they had no reason to be concerned with having the disease or being screened. Being asymptomatic implied health and wellness. Participant 1 said,

91 I guess from their doctor? No, I don't [know], I guess I should [know]. I never think of it. I think they have trouble peeing or something like that. No, I guess I really don't know the answer. I never thought of it.

Participant 3 discussed his notion that prostate cancer was diagnosed when men have trouble with elimination of either the bladder or bowel. He did not believe sexual difficulties were connected with the diagnosis. He said, "well I think they have trouble peeing. Or the other number. Number two. You know, enlarged. If you felt something when you were peeing. But as far as, I don't think as far as an erection, no."

Participant 5 thought men were diagnosed when they had abnormalities. He said,

You are going to get an irregular digital or PSA. Or you are going to get symptoms. You are going to get symptoms, painful urination, burning. Or if you ejaculate, I am not sure what there is there if there is anything different there. You could get less firm than you used to be.

Participant 2 said,

Well if your water is hard to go. I guess... .It starts and you cannot pee or something? Well, their water quits? Does that happen too? If you prolong it like?... I don't know. As long as I can pee.... I could pee fine.... as long as there is no problem with their body health wise... .if you have pains or something.

Participated 6 believed any symptom was sufficient enough reason to have screening done. Any symptom meant something was wrong and a check-up was warranted. He (6)

Just a thing that you know, should be checked once a year.... Because they should be mandatory once a year by the doctors to test the men. Anywhere from thirty up... Any age, there is people younger than me that is dying that has got prostate cancer. Any time they have that burning. Or anytime they got.. .there are other things that I really don't want to talk about in front of a woman... I recommend anytime they feel is something wrong. Something wrong with their sex drive or something anywhere. Irregularities, they should be tested.... Or even if the doctor has any idea there has been an infection in the bladder or anything (you) should be checked.

92 Participant 7 thought all men with prostate cancer had to be in pain or have other symptoms, but he was unsure if men would have other symptoms. He said,

They'd have to be sick in some way. They'd be in pain or something probably ... .Well um. I'm not sure if it is poison. If it's um painful or not, I'm not

sure. They'd be sick in a way or something... [prostate cancer] might be painful.

Previous research has identified knowledge to be an important factor in screening behavior (Cormier et al., 2003; Weinrich et al., 2000; Weinrich, Weinrich, Boyd, &

Atkinson, 1998; Tannor & Ross, 2006). Consistent with this study, previous research has reported that men lacked knowledge about prostate cancer and screening (Ilic et al., 2005;

McFall et al., 2006; Richardson et al., 2004). Previous research has also found that men associated symptoms with prostate cancer (Richardson et al.; Ward et al., 1997) and identified them as enablers for check-ups and screening (Hoffman & Gilliland, 1999; Ilic et al.; McFall et al.; Pinnock et al., 1998; Ward et al.). Unlike this study, Myers et al.

(1999) and Chan et al. (2003) found most of the men in their study believed screening should be done before symptoms appear while urinary symptoms were not reported to be associated with screening (Cormier et al ). The study by Myers et al. and Cormier et al. included men 40 to 70 years of age; the study by Chan et al. included men 50 years of age and older.

As a whole, the men in the study lacked an understanding of prostate cancer, prostate cancer screening, and prostate cancer prevention. The men articulated there was a lack of discussion about and awareness of prostate cancer and screening. While the men were unaware of prevention and diagnosis of the disease, they focused on the emergence of symptoms in the presence of prostate cancer and as enablers of seeking health care services.

93 Existing literature supports the findings of this research. Previous studies discussed the difficulties surrounding prostate cancer screening such as fear, embarrassment, and a threat to masculinity (Evans et al., 2005; George & Fleming,

2004). Men's reluctance to discuss sensitive health topics and the relationship between masculinity, prostate cancer, and screening has previously been reported (Allen et al.,

2007; Chappie & Ziebland, 2002; Evans et al.; George & Fleming; Griffith et al., 2007;

Ilic et al., 2005). Masculinity has been shown to have an effect on men's discussion about their health and health-related behavior (Courtenay; 2000; George & Fleming). More specifically, masculinity influences men's assessment of their health and well being (Ilic et al.), avoidance of health care professionals and services (Courtenay; Chan et al., 2003;

Chappie & Ziebland; George & Fleming; Griffith et al.), and discussion of prostate cancer and prostate cancer screening (George & Fleming; Griffith et al.). George and

Fleming found that men believe physical changes alter masculinity and are embarrassing; prostate cancer screening itself was identified to threaten masculinity (Allen et al.) and compromise manhood (Evans et al ).

Findings concerning the role of fear in prostate cancer screening similar to the current study have been frequently reported in the literature (Consedine et al., 2007; Dale et al., 2005; Evans et al., 2005; George & Fleming, 2004; Griffith et al., 2007; Hoffman

& Gilliland, 1999; Ilic et al., 2005; Myers et al., 2000; Richardson et al., 2004). Ilic et al. reported that men stay away from check-ups unless ill because of the increased probability of prostate cancer. Griffith et al., Ilic et al., and Richardson et al. found that men expressed fears, concerns, and powerlessness about developing the disease.

'94 Previous studies have reported men's awareness of gender distinctions in health- related behaviors (Dube et al., 2005; Evans et al., 2005; George & Fleming, 2004;

Griffith et al., 2007) and knowledge (Dube et al ), including attitudes and communication

(George & Fleming). Hedestig et al. (2005) reported that men 61 to 69 years of age never initiated discussion about their tribulations, fears, or thoughts, and were reluctant to converse about emotions and feelings. While women have been found to be more receptive to the health care system and their own health (Chappie & Ziebland, 2002;

Cherry et al., 2001), men were reluctant to consult and had limited encounters with health care professionals (Chan et al., 2003; Griffith et al.). Similar to one participant in the current study, research has identified that a difference exists between women's and men's cancer and/or screening (Barber et al., 1998; Dube et al.; George & Fleming; Ilic et al.,

2005; McFall et al., 2006).

Previous literature supports the findings of this study related to the aversion to prostate cancer screening, especially the DRE (Allen et al., 2007; Chan et al., 2003;

Consedine et al., 2007; Evans et al., 2005; McCoy et al., 1995; Myers et al., 1999;

Reynolds, 2008; Richardson et al., 2004; Robinson et al., 1996). Earlier findings (Allen et al.; George & Fleming, 2004; Oliffe & Thorne, 2007) support participants' recognition of the use of laughter and humor when discussing prostate cancer screening.

Supporting the current research, previous literature has identified men's lack of knowledge about prostate cancer, screening, and/or prevention (Allen et al., 2007; Chan et al., 2003; Demark-Wahnefried et al., 1995; Diefenbach et al., 1996; Ilic et al., 2005;

McFall et al., 2006; Richardson et al., 2004; Steele et al., 2000; Ward et al., 1997). Like the men in this study, previous findings reported that men associate urinary symptoms

95 with prostate cancer and screening (Hoffman & Gilliland, 1999; Ilic et al.; McFall et al.;

Pinnock et al., 1998; Richardson et al.; Ward et al.). Like the current findings, Ilic et al. reported that men 45 to 89 years of age who know others diagnosed with prostate cancer have enhanced awareness about prostate cancer, but not an increase in knowledge. Since only one participant briefly spoke of the controversy in prostate cancer screening, it is uncertain if participants had insufficient information about and awareness of this controversy. While two studies (Dube et al., 2005; McFall et al.) found that a few men in their study had heard of the limitations of PSA testing, others (Allen et al.; McFall et al.) reported that men had insufficient awareness of the controversy. As in earlier studies

(Diefenbach et al.; Dube et al.; Dunn et al., 2001; Guerra et al., 2007; Han et al., 2006;

McFall et al.), the current findings highlight the lack of communication between men and health care professionals about screening, even when screening may have been completed. Some participants in the current study underwent screening without their full knowledge. Similar to George and Fleming (2004), some participants spoke of the importance of having positive relationships with their health care professionals.

The current study confirmed much of what has been reported in the literature to date as well as findings not previously reported. These include that screening was felt to be unnecessary when men felt "complete" and asymptomatic, shyness was a barrier to screening, and women were perceived to be the stronger gender. This new knowledge was interpreted from the theme Being a Man and serves to further explain the needs of the men to maintain a perception of intact masculinity. Finally, although men have identified increasing age as reason to be concerned about developing prostate cancer

96 (George & Fleming, 2004; McFall et al., 2006; Ward et al., 1997), it was not a preoccupying factor related to screening in the current study.

97 Chapter V

Conclusion

Prior to this study, there was a gap in the research relative to the meanings, perceptions, and decision making regarding prostate cancer screening for men who had never been screened. Earlier research and literature focused on the exploration of the perceptions and experiences of being diagnosed with prostate cancer, rates of screening, enablers of screening, barriers to screening, and, the benefits and/or harms of prostate cancer screening.

The purpose of this hermeneutic phenomenological study was to explore, describe, and interpret the perceptions and meanings that prostate cancer screening had for asymptomatic men who had never been screened in order to improve our understanding of what screening means. The impetus for this study was threefold: a)

Nova Scotia has the third highest rate of deaths from prostate cancer in Canada, b) early diagnosis improves the likelihood of successful treatment, and c) prostate cancer screening standards remain controversial.

The findings of this study included three themes, A Silent Topic, Being a Man, and Lacking Knowledge. The first theme, A Silent Topic, revealed the silence surrounding prostate cancer and screening. Men acknowledged being reluctant to discuss screening.

They struggled with any discussion about screening due to: embarrassment, nervousness, fear, worry, and the invasion of privacy.

The second theme, Being a Man, prevented men from openly discussing their health, especially prostate cancer screening because it felt emotionally and physically invasive and a key source of embarrassment. Masculinity influences men's perceptions

98 and meanings of prostate cancer screening because of their need to be physically complete and whole. Screening was felt to be unnecessary when men feel complete and asymptomatic. Screening was also felt to be contrary to being a man. Men were found to be fearful of screening because they believed it may compromise their masculinity. Fears surrounded the DRE and a prostate cancer diagnosis. Shyness was found to prevent men from having screening done because of the sensitive nature of the DRE. Identified as a deterrent to screening, the DRE was described as: dreaded, feared, distressing, embarrassing, uncomfortable, unpleasant, appalling, a "dirty" examination, and a topic to laugh at. The men also perceived women to be the stronger gender. They felt women were more open, proactive, and communicative about their health and health-promoting efforts.

Lacking Knowledge, the final theme, acknowledged that discussion about and awareness of prostate cancer and screening was certainly poor. In fact one of the inclusion criteria for this study was that participants not be screened. During the interviews it became apparent that three of the seven men may have in fact had complete or partial screening for prostate cancer yet did not realize this. One man assumed he was screened but had never heard of PSA testing nor had he had it done. Patient-physician communication about prostate cancer screening was very limited with considerable discomfort expressed by the participants. Atypical symptoms, such as those with the urinary tract, were associated with seeking health care, prostate cancer screening, and prostate cancer. While I did not discuss the controversy about screening with participants for concern this may add to their worries, one participant momentarily referred to the

99 uncertainty of PSA testing. Whether or not participants were aware of the controversy remains uncertain, but it is possible they lacked such knowledge.

New findings from this research that contribute to understanding regarding prostate cancer screening include: unwillingness to discuss screening; screening is unwarranted when men feel "complete" and asymptomatic; shyness as a barrier to screening; and women being the stronger gender.

Implications of the Research

Providing men with the opportunity to have their perceptions heard and interpreted produced valuable information about what men know and do not know about prostate cancer screening. Findings show that the men in this study face multiple barriers and individual challenges when it came to prostate cancer screening. Emotional, cultural, social, physical, motivational, behavioral, and educational factors deterred the men from learning about, discussing, and participating in prostate cancer screening. Such factors need to be recognized in the development, implementation, and delivery of prostate cancer education and detection services.

The findings of this study have important implications for practice, policy, research, and education in the discussion of prostate cancer screening and the early detection of prostate cancer. The next section highlights these implications, as well as the study's strengths and limitations, and my final reflections.

Implications for Practice

The findings draw attention to the need for health care professionals such as physicians and nurses to understand men's reluctance and difficulty in discussing prostate cancer and screening, and that this may deter them from initiating health promoting

100 screening discussion and practices. Practicing professionals have opportunities to interact with men who have never been screened for prostate cancer in a variety of health-related settings, the community and the acute care setting, and in rural and urban settings. Front- line healthcare providers such as physicians, registered nurses, and nurse practitioners can initiate annual discussion about prostate cancer and screening with all men aged SO years and older, especially for those men who have never been screened and those who are at high-risk to develop the disease. As most prostate cancer screening takes place in physicians' offices and participants in this study believed that most men avoid going to their physicians, this decreases patient-physician communication about prostate cancer and prostate cancer screening. If men do not seek out health care services, conversations about, and screening for, prostate cancer screening may not take place. This has implications for public health education initiatives to ensure men are having the discussion needed to make an informed decision about prostate cancer screening.

Information sessions, as well as handouts and posters offering prostate health education can be made available at all health care offices, hospitals, clinics, and around the community including shopping centers, work sites and various places of business and leisure.

Given the increasing number of female physicians and nurse practitioners in healthcare today, this may have implications for prostate cancer screening. While most participants in this study reported having a male physician, one participant reported he was comfortable having a female physician who completed his DRE and having health- related discussions with her. Healthcare professionals have tp ask men if they have a gender preference in prostate cancer screening discussions and examinations.

101 Educating front-line healthcare professionals on how to sensitively and appropriately conduct prostate cancer screening discussions is warranted. Seminars on how to conduct men's health clinics, especially prostate cancer screening clinics can be offered to all health care professionals each year so they can become familiar with this health issue. For example, practicing professionals who conduct men's health clinics and prostate cancer screening clinics, urologists, and researchers who have expertise in the field could provide useful information to assist others to understand and most appropriately meet and address the needs of men and offer prostate cancer screening discussion and services. By disseminating what they have observed and learned in their respective area of expertise, the educator can be educated.

Healthcare professionals have to ask men what it may take for them to visit a provider on a regular basis. In asking men specifically about prostate cancer and screening the silence can be broken. Physicians and nurses can ask at-risk populations about their personal thoughts regarding prostate cancer screening and their opinions on what can be done to promote prostate cancer screening discussions and practices possibly easing the identified barriers surrounding masculinity, fear, anxiety, shyness, and the lack of knowledge. Men may feel their input is valued and feel empowered that their advice may be helpful to healthcare providers and to other men.

Men who decide to have screening done need to have the service provided in a socially and culturally sensitive manner. For example, although this may not be a realistic goal given the sensitive nature of a DRE, health care practitioners can try to perform the examination without men feeling and experiencing additional unnecessary embarrassment. Explaining the DRE and discussing men's feelings about this

102 examination prior to and following the procedure may help to reduce the anxiety and discomfort men report to be associated with the DRE. Healthcare professionals need to ask men how they can make the DRE less embarrassing, feared, uncomfortable, dreaded, and "dirty." Educating men on the findings of the DRE also needs to be provided immediately following the examination to lessen anxiety and fears. Finally, if after men make an informed decision and choose to have or not to have screening done, healthcare providers should be nonjudgmental and respect the informed decision of each individual.

Implications for Education

The findings provide implications for health care professionals in a health promoter and health educator role to be aware of the controversy surrounding screening but also of the value of baseline and follow-up screening for men 50 years of age and up.

Educators need to follow the evidence, synthesize it then share it appropriately depending upon the audience. Education is one element in ensuring that men are well-informed about both PSA testing and the DRE when it comes to their personal screening decisions especially given their reluctance in discussing health and seeking health care, such as prostate cancer screening. Having the conversation about prostate cancer and screening is warranted prior to men making an informed decision about prostate cancer screening.

Men in this study lacked knowledge in the area of prostate cancer screening, and this can produce fear, therefore intensifying the probability that an individual will not access health information (Woods, Montgomery, & Herring, 2004). Appropriately educating men could produce dual results, i.e., alleviating both that knowledge gap and the attitudinal barriers (Richardson et al., 2004) to screening.

103 Implications for Policy

The controversy surrounding prostate cancer screening was outlined in the opening chapter of this work. The evidence is accumulating as to the benefits of screening and when conclusive the establishment of a prostate cancer screening program in Nova Scotia would raise screening awareness and participation while decreasing the silence that surrounds both prostate cancer and screening. More financial capital also needs to be made available for research to evaluate the benefits of prostate cancer screening to reach a consensus on screening. Achieving a consensus is necessary to help guide healthcare professionals in advising men regarding screening.

In the interim there are alternatives that the province could engage in that would raise the awareness of prostate health and contribute to normalizing the notion of prostate cancer screening. Public advertisement campaigns normalizing prostate health for men may create a more positive association between men, masculinity, and the DRE and aid in creating discussion about prostate health. The development of community prostate health support groups that meet monthly may also be beneficial. Getting men to attend wellness and screening clinics and support group meetings may prove difficult. Offering incentives, such as free food and beverages, along with the possibility to win prizes (i.e., grocery vouchers, a day of golf, vacation packages) may help with attendance. Arranging guest speakers who have personally experienced prostate cancer screening, as well as those who were diagnosed with the disease and treated early, can provide men with a real life lesson in the benefits of taking proper care of their health.

Health promotion experts need to ensure men's health is just as visible as women's health. Prostate health deserves to receive the same level of recognition and

104 support that breast health does. Doing this may improve prostate health awareness, and improve prostate health. Physicians, nurses, those in health promotion, and policy makers are key contributors to bringing about a positive change in normalizing prostate health at the policy level locally, provincially, and nationally.

Implications for Research

This study has furthered our knowledge and understanding of what prostate cancer screening means to the men involved. We now know men experience reluctance in discussing screening, that screening is deemed unwarranted when men feel well and that the DRE is associated with notions of deviance.

These findings suggest the need for further studies. The phenomenon of men's protective avoidance needs to be explored and understood. There is a need to explore the notion that screening is unwarranted if the person feels well/whole. Research is needed on men's avoidance of screening because of a need to protect themselves, so as to feel whole. This belief has implications for screening related to all forms of cancer particularly in men who are known to visit their health providers less frequently than women. The men expressed dread regarding the thought of the DRE. This examination was described as "dirty" and seemed to mean to the men that submitting to the DRE was deviant. This illustrates the need for sociological research to continue to unpack the social construction of the DRE as deviant.

Interestingly, study recruitment did result in accruing some participants who actually had been screened which has implications for how well the men understood the care they received as well as literacy levels, and patient-physician communication.

105 Further study is needed to explore physicians' and nurses' roles, challenges, and perceptions related to the importance of and discussion about prostate cancer screening.

As the current study took place in a rural setting, it would be interesting to study similar men who live in much larger urban centers, closer to major health care facilities, such as cancer care centers. The differences and/or similarities between rural and urban populations are areas for future research. The study sample was not diverse in regards to educational background, and this could be attended to in a future study. Future interventional studies assessing the outcomes of educational intervention strategies for prostate health promotion, including screening, and men's health clinics are warranted.

Prostate cancer can be treatable if caught in time; steps can be taken to prevent deaths from prostate cancer. It is vital that men discuss and initiate prostate health discussions for the prevention, early detection, and/or successful treatment of the disease.

Study Strengths

A hermeneutic phenomenological approach provided the means to explore perceptions and meanings of prostate cancer screening for asymptomatic men who were never knowingly screened. The men's stories provided an understanding of what prostate cancer screening meant to them. This information could not have been captured without the use of the interview method. Most participants acknowledged that men struggled when discussing prostate cancer and screening and/or participating in screening because of fear, nervousness, worry, embarrassment, sensitivity, shyness, the DRE, and masculinity. Every participant was found to lack knowledge about and awareness of prostate cancer, screening, and prevention providing striking findings with significant implications for men's health.

106 Study Limitations

While this study did provide new knowledge, limitations were encountered.

During the interviews, some of the men revealed that they did have urinary symptoms in the past and/or present and may have been screened for prostate cancer. One man reported experiencing dysuria and another reported experiencing nocturia. Therefore the study unintentionally included men who were screened. Recruiting seven men especially in small rural communities was a challenge. Few men responded to my recruitment advertisement. The nature of the topic revealed men's reluctance and unwillingness to participate in the study. Even those who participated had difficulty discussing screening.

At times, it was difficult to get the men to communicate their perceptions and meanings.

As a young woman researcher in my 30's conducting first time research on the sensitive topic of prostate cancer screening, this may have influenced data collection given the gender, age difference, and sensitive subject matter. Repeating the study and having an older woman (or man) who understands men and conduct the interviews may have provider richer data.

While the face-to-face interview captured perceptions that may otherwise be missed, given the level of discomfort the men experienced with this method it may be worth repeating the study and using focus groups. This method may generate a synergy of ideas that individual interviews did not and men may feel more comfortable with this approach. To help with the recruitment of men, offering monetary incentives may have helped. Seeking guidance from researchers who have successfully recruited men into their studies, even when the topic was of a sensitive nature, is proposed. Posting

107 advertisements in health care facilities, men's clubs and recreational facilities also may have helped with recruitment.

Recruitment presented more challenges than anticipated, however, given the study findings this is understandable. The themes that emerged from the study represent the perceptions and meaning of prostate cancer screening to these men. The study sample was not diverse in regards to educational, and socio-economic background which may further explain the theme of lacking knowledge. Wallner et al. (2008) determined that education level was a predictor of screening and given the educational and socio- economic level of most of the participants supports this finding. Those reading this work will be able to make a decision about the transferability of these findings given the limitations outlined above.

This hermeneutic phenomenological study has advanced understanding of the perceptions and meanings that prostate cancer screening has for the men involved.

Although the new knowledge generated by this study enhances our understanding, further investigations are necessary. Interpretative work is unique in the concepts it provides that enable registered nurses and all health care providers to improve care approaches to prostate cancer screening.

Final Reflections

Although I value prostate cancer screening, I continually reflected on my screening bias during data collection and analysis in order to minimize its influence on my interpretation of the men's stories. The men were unaware of my position on prostate cancer screening. During the interviews, I respected participant's thoughts on their health and prostate cancer screening regardless of my professional or personal opinion. I did not

108 attempt to pass judgment or provide the men with advice on their screening decisions.

Their meanings and perceptions of prostate cancer screening were their own and based on their personal lived experience with the topic and not as a result of my bias.

On a personal and professional level, as a result of this research, I have a new level of understanding of how masculinity is intricately connected to men's health, especially prostate cancer screening. I have a beginning understanding of how masculinity and gender affect men's health, health decisions, attitudes, and meanings and perceptions of prostate cancer screening. This was my first attempt at conducting research and first time conducting research with a gender-specific and sensitive topic. As a young woman researcher, I never fully imagined the important role of masculinity in men's health.

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125 Appendix B

E-mail and Telephone Recruitment Script

"Hello Mr. . Thank you for contacting me. My research is being conducted in partial fulfillment of the requirements for the degree of Master of Nursing from Dalhousie University School of Nursing. The purpose of this study is to explore the perceptions and meanings that prostate cancer screening has for asymptomatic men who have never been screened. I want to explore the experiences of men who have never been screened for prostate cancer to gain an understanding of men's perspectives on screening and to understand the emotional, social, and cultural aspects surrounding screening. My research question is: What does prostate cancer screening mean to men who have never experienced it?

You may participate if you have never been screened for prostate cancer. This means that you have never had a blood test for prostate specific antigen (PSA), or a digital rectal exam (DRE). The remaining eligibility criteria are that you must be:

• Male between 40 and 65 years of age.

• English speaking.

• Living in Antigonish, NS and/or a surrounding community.

• Without a diagnosis of prostate cancer.

• Without any symptoms of prostate cancer.

Do you meet all of these criteria? Since you meet these criteria, you are eligible to participate (or I am sorry that you do not meet all of the criteria and therefore you are not eligible to participate. I thank you for taking the time to contact me). If you choose to participate in this study, you will be asked to participate in two complete rounds of one-

127 to-one interviews with me. The interviews will be audio taped and recorded word-for- word. At any time during the interview, the tape recorder can be turned off if you wish.

The interview will be conducted at a time and place mutually agreed upon and allow me to gather information and take observational notes. After the first interview, I will analyze your data. Eventually, a second one-to-one interview will be conducted to gather more data. This will allow me to hear your views on the analysis of the first interview. If you provide further insight or disagree with the analysis, your perspective will be integrated into the written research report. The interviews will last 1-114 hours each. If you agree to participate, I will require you to sign a consent form prior to the data collection.

I will be the sole collector and transcriber of the data. Your identity and your biographical information will not be identified in any reports, presentations, or publications of the research. I will ask you to choose a fictitious name that will be utilized in the data collection, analysis, written reports, publications, and presentations. You will not be informed of names or characteristics of the other interview participants in the study. Your participation in this study is voluntary and you are free to withdraw from the study at any time without explanation or consequence.

If you have any questions, please feel free to ask me. After hearing this information, do you agree to participate in my study? If yes, thank you very much for agreeing to participate. Do you have a preferred date and location that we can meet to begin the informed consent process and data collection? I look forward to meeting you (If no, I thank you very much for contacting me. If you decide to change your mind, please feel free to contact me.). As a potential participant of the study, I will send you the

128 consent form before the initial interview so that you will have adequate time to read about the study that you are consenting to participate in. I will ask you to review the form prior to meeting with me for the initial interview. I will review the consent form and answer any questions or concerns you may have when we meet for the first interview.

May I have your mailing address so that I can send you the consent form?

I do ask that you refrain from seeking any information about prostate cancer screening before I meet with you and while you are participating in my research because my study participants are men who have never been screened for prostate cancer." To ensure participants have not sought information about prostate cancer screening between the time of responding to the recruitment advertisement and participating in the interview, I will ask them about this when I meet with them to obtain consent and begin data collection.

129 Introduction

You are invited to participate in a research study being conducted by Michelle

Chisholm, RN, BScN, BScPE, who is a Master of Nursing graduate student at Dalhousie

University, Halifax, NS. The study is being conducted as a partial requirement of the

Master of Nursing thesis program. Your participation in this study is voluntary and you may withdraw from the study at any time. The quality of your health care will not be affected by whether or not you participate. The study is described below. This description tells you about the risks, inconvenience, or discomfort which you might experience.

Participating in the study will likely not benefit you, but information might be gained that will benefit others. You should discuss any questions you have about this study with the graduate student researcher Michelle Chisholm, RN, BScN, BScPE.

Purpose of the Study

The purpose of this study is to explore the perceptions and meanings that prostate cancer screening has for asymptomatic men who have never been screened. I want to explore the perceptions of men who have never been screened for prostate cancer to gain an understanding of men's perspectives on screening and to understand the emotional, social, and cultural aspects surrounding screening.

The research question is: What does prostate cancer screening mean to men who have never experienced it? The fundamental goal of the study is to describe, understand, and interpret the personal meaning of prostate cancer screening for asymptomatic men who have never experienced it. This research will produce knowledge to assist health care professionals support informed decision making about prostate cancer screening and may contribute to policy making for a provincial screening program.

131 Study Design

The study will include approximately eight to ten men who live in the town and county of Antigonish and/or surrounding communities, Nova Scotia. I will collect information will through individual interviews.

Who can participate in the study

You may participate if you have never been screened for prostate cancer. This means that you have never had a blood test for prostate specific antigen (PSA), or a digital rectal exam (DRE). The remaining eligibility criteria are that you must be:

• Male between 40 and 65 years of age.

• English speaking.

• Living in Antigonish, NS and/or a surrounding community.

• Without a diagnosis of prostate cancer.

• Without any symptoms of prostate cancer.

Eligibility criteria will be reviewed with each participant to ensure they meet all criteria requirements and understand them.

Who will be conducting the Research

Michelle Chisholm, RN, BScN, BScPE, Master of Nursing Student at Dalhousie

University School of Nursing, Halifax, NS will be conducting the research. I will be supervised by my thesis supervisors Marilyn Macdonald, RN, PhD, Assistant Professor and Barbara Downe-Wamboldt, RN, PhD, Director and Professor, at Dalhousie

University School of Nursing, Halifax, NS.

132 What will you be asked to do

If you decide to participate, you will be asked to sign a consent form and participate in two separate one-to-one interviews lasting 1-1 V2 hours each. The interviews will be conducted at a mutually agreeable setting and time. The interviews will be audio taped and transcribed word for word. At any time during the interview, the tape recorder can be turned off if you wish. A second interview will be conducted to gather more data and to confirm my understanding of the data from the first interview. During the second interview, you can review the analysis of the first interview to verify my interpretations as I want to ensure all the information from the previous interview has been correctly interpreted. This will also allow me to hear your views on the analysis of the first interview. If you have further insights or disagree with my analysis, all perspectives will be integrated into the written research report. If you wish to add, modify or withdraw any quotations or information, this will be done at the second interview.

Possible Risks and Discomforts

The proposed research is not expected to cause any risk or discomfort to you as a participant. If your participation causes you discomfort, it will be minimal and no greater than that related to common everyday life experiences.

Possible Benefits

There are no anticipated benefits to participation, but it does allow your voice, insights, and experiences to be heard. Participation may assist you in thinking about prostate cancer screening.

133 Compensation/Reimbursement

You will not be paid for your participation in the study, nor will there be any costs associated with being in the study.

Confidentiality & Anonymity

Anonymity: I will be the sole collector and transcriber of the data. While anonymity will not be entirely possible as I will know your identity, I will protect your identity through the use of a fictitious name in all reports of my data. You will not be identified as a participant in any reports, presentations, or publications of this research. Your name and identifying information will not be used in any reporting of the data. You will be asked to choose a fictitious name that will be utilized in the data collection, analysis, written reports, publications, and presentations. You will not be informed of the names or characteristics of the other participants in the study.

Confidentiality: I will transcribe, describe, and interpret your information using a personal computer which is protected by my personal password. My supervisors Marilyn

Macdonald, RN, PhD and Barbara Downe-Wamboldt, RN, PhD will be the only other people with access to your information. Your information will be kept in a secure locked filing cabinet to which I have the only key. I will maintain all written and tape recorded information in this locked filing cabinet in my office at St. Francis Xavier University

School of Nursing for seven years, post publication of the study (as per Dalhousie

University Policy on Scholarly Integrity). I will be the only person to have access to this filing cabinet. Information and all data will then be destroyed after seven years.

134 STUDY TITLE

Exploring Perceptions and Meanings of Prostate Cancer Screening of Unscreened

Men

Consent and Signature

I have read the explanation about this study. I have chosen

as my fictitious name. I have been given the opportunity to discuss the study and my questions have been answered to my satisfaction. I hereby consent to take part in the study. However I realize that my participation is voluntary and that I am free to withdraw from the study at any time. I hereby consent to allow my information to be audio taped to allow the researcher to record, transcribe, and analyze the data.

Name of Participant Signature Date

Do you give the researcher your permission to use direct quotations when recording and reporting your information in order to illustrate the findings of the research? Please check one of the following:

Yes

No

I have explained the study and obtained consent from this participant.

Name of Researcher Signature Date

136 Appendix D - Research Instrument/Guide

Background Data, Demographics, & Interview Guide

Please state your chosen fictitious name which I will use for data collection and analysis:

Questions:

1) Tell me what you know about prostate cancer screening.

a. Tell me how you know this.

b. Have you ever heard of PSA or prostate specific antigen testing?

i. Would you like me to tell you more about this test?

c. Have you ever heard of a DRE or digital rectal examination?

i. Would you like me to tell you more about this test?

2) Tell me what prostate cancer screening means to you.

a. How important or unimportant is prostate cancer screening for you?

3) What are your thoughts on prostate cancer screening?

4) Have you ever considered being screened for prostate cancer?

a. If yes, tell me why you have considered being screened for prostate

cancer?

b. If no, are there any reasons why you have never considered being screened

for prostate cancer?

5) What has your physician or other health care professional (or other) discussed

with you about prostate cancer screening?

a. Would you have liked to have known more?

i. If yes, can you tell me what you would like to know more about?

137 ii. If no, can you tell me why you did not (or do not) want to know

more?

6) How comfortable are men at discussing prostate cancer screening?

a. How comfortable is it discussing prostate cancer screening with me?

b. How comfortable was it/is it discussing prostate cancer screening with

your physician?

c. How comfortable is it discussing prostate cancer screening with others?

i. Please tell me who have you discussed prostate cancer screening

with?

7) Why don't more men choose to have prostate cancer screening done?

8) Is there anything you would like to add?

Demographic data to be incorporated into the data collection when appropriate: Age: Education: Occupation: Marital Status: Self-described Health Status: a. How would you describe your overall health status? i. Do you consider yourself to be in excellent health, very good health, good health, or poor health? ii. Describe what you mean when you say you are in health. iii. What does excellent health status mean to you? iv. What does poor health status mean to you?

138