MEN‟S ‘CYCLE OF SILENCE’:
An Exploration of Men‟s Experiences during the waiting period between Prostate Specific Antigen and Prostate Biopsy Results. A Case Study in a Metropolitan Radiology Unit
Susan Heyes BNg, RN. School of Nursing and Midwifery, Flinders University Submitted in partial fulfilment of the requirements of Bachelor of Nursing Honours Degree December 2010
TABLE OF CONTENTS TABLE OF CONTENTS ............................................................ i SUMMARY .............................................................................. iv DECLARATION....................................................................... vi ACKNOWLEDGEMENTS ..................................................... vii GLOSSARY OF ABBREVIATIONS .................................... viii CHAPTER 1: INTRODUCTION & BACKGROUND ............ 1 1.1 INTRODUCTION ........................................................................... 1 1.2 DEFINITION OF TERMS ............................................................... 1 1.3 SUMMARY OF BACKGROUND LITERATURE ........................ 4 1.4 STUDY SETTING ........................................................................... 6 1.5 AIM AND OBJECTIVES OF THE STUDY ................................... 6 1.6 SIGNIFICANCE OF THE RESEARCH ......................................... 7 1.7 RESEARCH METHODOLOGY AND FINDINGS ....................... 7 1.8 SUMMARY ..................................................................................... 8
CHAPTER 2: LITERATURE REVIEW ................................. 10 2.1 INTRODUCTION ......................................................................... 10 2.2 METHOD ...................................................................................... 10 2.2.1 Search Results & Selection ................................................................... 11 2.2.2 Analysis & Appraisal of Included Articles ........................................... 12 2.2.3 Summary & Critique of Included Literature ......................................... 13 2.2.4 Analysis of the Findings of the Reviewed Studies ................................ 15
2.3 FINDINGS ..................................................................................... 15 2.3.1 Prostate Cancer (PCa) Screening .......................................................... 16 2.3.1.1 Digital Rectal Examination (DRE)......................................... 16 2.3.1.2 Prostate Specific Antigen (PSA) ............................................. 17 2.3.1.3 Trans Rectal Ultrasound Guided Biopsy (Trus-bx) ............... 18 2.3.2 Feelings & Emotions ............................................................................. 19 2.3.2.1 Sexuality and Anal Penetration .............................................. 19 2.3.2.2 Embarrassment, Anxiety and Fear ......................................... 20 2.3.2.3 Pain ........................................................................................ 20 2.3.3 Variations of Masculinity ...................................................................... 22 2.3.3.1 Masculinity and Masculine Behaviour ................................... 22 2.3.3.2 Male Communication ............................................................. 24 2.3.3.3 “Code of Silence” .................................................................. 24 2.3.4 Coping with Prostate Cancer Information ............................................. 25 2.3.4.1 Prostate Cancer Information, Knowledge and Research ....... 25 2.3.4.2 Facing Illness ......................................................................... 27 2.3.5 Interactions with Doctors and Specialists ............................................. 27
2.4 DISCUSSION ................................................................................ 29 2.5 SUMMARY ................................................................................... 32
CHAPTER 3: METHODOLOGY ........................................... 34 i
3.1 INTRODUCTION ............................................................................... 34 3.2 PARADIGM ...................................................................................... 34 3.3 METHODOLOGICAL DECISION-MAKING .......................................... 36 3.4 CASE STUDY ................................................................................... 38 3.5 STUDY DESIGN................................................................................ 39 3.6 RESEARCH METHOD................................................................. 41 3.6.1 Setting .................................................................................................... 41 3.6.2 Participants ............................................................................................ 42 3.6.3 Data Collection ...................................................................................... 43 3.6.4 Data Analysis ........................................................................................ 46
3.7 RESEARCH „TRUSTWORTHINESS‟ ........................................ 47 3.8 ETHICAL CONSIDERATIONS ................................................... 48 3.8.1 Informed Consent .................................................................................. 49 3.8.2 Confidentiality ....................................................................................... 49 3.8.3 Risk of Harm ......................................................................................... 50 3.8.4 Conflict & Political Considerations ...................................................... 50
3.9 SUMMARY ................................................................................... 51
CHAPTER 4: FINDINGS ........................................................ 52 4.1 INTRODUCTION ......................................................................... 52 4.1.1 Participants Portrayal ............................................................................ 52 4.1.1.1 Adam ....................................................................................... 53 4.1.1.2 Brian ....................................................................................... 53 4.1.1.3 Craig ....................................................................................... 54 4.1.1.4 Derek ...................................................................................... 54 4.1.1.5 Ely ........................................................................................... 54 4.1.1.6 Frank ...................................................................................... 54 4.1.1.7 Greg ........................................................................................ 55 4.1.1.8 Harry ...................................................................................... 55 4.1.1.9 Ian ........................................................................................... 56 4.1.1.10 James .................................................................................... 56 4.1.2 Participants‟ TRUS-bx procedures ........................................................ 56 4.1.3 Themes .................................................................................................. 58
4.2 THEME 1 - MASCULINE BEHAVIOUR .................................... 60 4.2.1 Anal Penetration .................................................................................... 61 4.2.2 Jokes ...................................................................................................... 63 4.2.3 Sexuality ................................................................................................ 64 4.2.4 Code of Silence ..................................................................................... 65 4.2.5 Denial .................................................................................................... 67 4.2.5.1 Greg ........................................................................................ 68 4.2.5.2 Ely ........................................................................................... 69 4.2.5.3 Adam, James, Craig, Derek, Ian, Harry ................................ 71 4.2.6 Acceptance ............................................................................................ 72
4.3 THEME 2 - FEAR, SHOCK AND EMOTION ............................. 73 4.3.1 Pain ........................................................................................................ 76 4.3.2 Privacy ................................................................................................... 78 4.3.3 Aging & Death ...................................................................................... 79 4.3.4 Time & Nuisance................................................................................... 80
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4.4 THEME 3 – COMMUNICATION OF INFORMATION ............. 82 4.4.1 Awareness - (confusion, consent, false information) ............................ 82 4.4.2 Appreciating Honesty ............................................................................ 86 4.4.3 What I Would Tell Another Man .......................................................... 86
4.5 SUMMARY ................................................................................... 88
CHAPTER 5 DISCUSSION .................................................... 90 5.1 INTRODUCTION ......................................................................... 90 5.2 MAJOR FINDINGS OF THIS STUDY......................................... 92 5.2.1 Expanding On the Meaning of Masculinity .......................................... 93
5.3 OBSCURING MASCULINE BEHAVIOUR................................ 95 5.3.1 Justification of Anal Penetration ........................................................... 95 5.3.2 Not So Funny Now ................................................................................ 97 5.3.3 „Manhood‟ and Sexuality ...................................................................... 98 5.3.4 Decoding the „Code of Silence‟ ............................................................ 99 5.3.5 It Can‟t Be Me ....................................................................................... 99 5.3.6 What Will Be Will Be ......................................................................... 101
5.4 GETTING IN TOUCH WITH FEELINGS ................................. 101 5.4.1 Variances in Pain ................................................................................. 103 5.4.2 Coming to the End ............................................................................... 105 5.4.3 On Home Ground ................................................................................ 106
5.5 TELL ME, TELL HIM, TELL THEM ......................................... 107 5.5.1 What and Why They Did Not Know ................................................... 107 5.5.2 Tell Me the Truth ................................................................................ 110 5.5.3 Perpetuating the „Cycle of Silence‟ ..................................................... 112
5.6 SUMMARY ................................................................................. 113
CHAPTER 6: CONCLUSION ............................................... 115 6.1 INTRODUCTION ....................................................................... 115 6.2 STUDY SYNOPSIS .................................................................... 116 6.3 CLINICAL IMPLICATIONS ...................................................... 118 6.4 RECOMMENDATIONS FROM THIS STUDY......................... 119 6.4.1 Education ............................................................................................. 120 6.4.2 Service Provision ................................................................................. 121
6.5 RECOMMENDATIONS FOR FUTURE RESEARCH .............. 122 6.6 LIMITATIONS ............................................................................ 123 6.7 SUMMARY ................................................................................. 124
7.0 REFERENCES ................................................................. 126 8.0 APPENDIX INDEX ......................................................... 134 TABLES & FIGURES WITHIN THE TEXT. Table 4.1 Personal Demographics and Screening History of all 10 Participants.......53 Table 4.2 TRUS-bx pain Score 0-10..........................................................................77 Figure 4.1 Themes emerging from the findings of the PCa Screening trajectory.....58 Figure 5.1 The „cycle of silence‟................................................................................90
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SUMMARY Prostate cancer (PCa) screening is a topical, controversial subject among the biomedical professions and it is an issue that many men find difficult to discuss. This study emerged from the researcher‟s work in a Radiology Unit where Transrectal Ultrasound Guided Prostate Biopsies (TRUS-bx) were performed. Her interest in how men coped with PCa screening and questions concerning whether men‟s needs were being met as they went through PCa screening were the catalyst for this study. This study is unique in that it is the only study to the researcher‟s knowledge, to concentrate on the screening experience of men. It sought to capture their lived experiences, and was conducted within a very short time frame therefore eliminating memory lapse. A review of the literature revealed that there is a paucity of research and information available involving PCa screening and the lived experience of men undergoing this process. The lack of studies or indeed any authorship on this subject limited the origins of studies to Australia, Canada and the United Kingdom. Lack of knowledge in the area of men‟s needs as they go through the PCa screening procedure (in terms of information and education) and the preservation of their sense of masculinity and comfort, was discovered. This study intended to bridge that gap in knowledge concerning the „lived experience‟ of PCa screening. This lack of information and education showed a need for this study, which revealed that if the services provided in this setting include relevant information and education, men‟s sense of masculinity may then be preserved.
The aim of this study was to determine the subjective experiences of 10 men going through the PCa screening trajectory to establish their experiences and the meaning behind them. The study‟s objectives were to: 1. Identify what men‟s needs were at the time of screening. 2. Examine the protocols in relation to their needs. 3. Identify appropriate educational and service provision.
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Using a qualitative approach and a multiple embedded Case Study methodology enabled the researcher to extract the meaning behind ten men‟s experiences. These men were interviewed for one hour thereafter their audio-recorded interviews were transcribed verbatim. Included in the data collected were the demographics of the cohort, their pain score involved in the TRUS-bx and their final PCa screening result. Ethical considerations and rights were observed at all times including those of anonymity and rights of refusal, termination and withdrawal from the study. A thematic analysis was utilised and three themes emerged: „Masculine Behaviour‟, „Fear, Shock & Emotion‟, and „Communication of Information‟. These themes were also found to be surrounded by the „Cycle of Silence‟ that revolved around the reasons why men came to PCa screening with little or no knowledge of the subject. The study revealed that men came to screening with limited knowledge (although they appreciated the honest information they were given), there was a „code of silence‟ that stopped them from talking about it, and when asked what they would say, it was not necessarily the truth or all of the facts. Hence, the „Cycle Of Silence‟, born from the masculine way in which men dealt with these invasive tests.
Nurses involved in this area of healthcare need to be aware of the issues that emerge from this study because it is possible that the findings may be relevant or applicable to their own practice setting. It was important to investigate these issues so that an improvement to the experiences of men during their PCa screening could be made.
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DECLARATION
I certify that this thesis does not incorporate without acknowledgement any material previously submitted for a degree or diploma in any university; and that to the best of my knowledge and belief it does not contain any material previously published or written by another person excepted where due reference is made in the text.
Susan Heyes BNg RN Honours candidate
_____________________________
I believe that this thesis is properly presented, conforms to the specifications for the thesis and is of sufficient standard to be, prima facie, worthy of examination.
Professor Jan Paterson PSM, RN, PhD, FCN, MRCNA.
___________________________________
Dr. Ann Harrington RN, DNE, BEd, MN.
___________________________________
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ACKNOWLEDGEMENTS This thesis could not have been completed without the assistance of a number of people who have been helpful, educational, inspiring and supportive. Most importantly, this research would not exist without the voluntary co-operation of 10 wonderful men who gave honest and open accounts of their PCa screening experience.
I would like to thank my two very experienced and knowledgeable supervisors, Professor Jan Paterson and Dr. Ann Harrington, for their enlightenment, assistance, and patience, particularly with the „Susanisms‟, and for their insightful corroboration. Other faculty members from the School of Nursing and Midwifery who have been of assistance with encouragement are Dr. Lindy King, Dr Alison Hutton and Dr. Ingrid Belan.
I would also like to thank the Metropolitan (public) Hospital, which was the setting for this study. I also appreciated the time and efforts from the staff in the Radiology Unit in particular the head of the department, Professor M Sage, head Radiographer C Kapsis, the RNs and Sonographers. Special thanks to K Meadows and the reception staff who were most diligent in their assistance with the recruitment of participants.
On the home front, I would like to thank the man who kept me alive throughout this process. Without putting food and drink in front of me, and lovingly dragging me away from the computer when „enough was enough‟, sending me outside for fresh air every few days and giving me constant support and encouragement, I would not have survived. Thank you Thomas Knight for believing that I could actually do this. Xx
I would also like to thank my parents for their ever-constant love and encouragement in all things and always having faith in me, and my abilities to pull through. Xx
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GLOSSARY OF ABBREVIATIONS
ACP ACS ASIM AUA bx Ca DRE Dr ED ERSPC (7 European countries) GP Hr. HRQOL Info Intro Lig gel LUTS mnths Pbx PCa PCRMP PCSG PLCO (U.S.) Protect (U.K.) PSA Pt. QOL Qual Quant RN RRP SDR TRUS-bx USPSTF (U.S.) UK VAS wk Xyl. Inj
American College of Physicians American Cancer Society American Society of Internal Medicine American Urological Association Biopsy Cancer Digital Rectal Examination Doctor Erectile Dysfunction European randomized study of screening for Prostate cancer General Practitioner Hour Health Related Quality of Life Information Introduction Lignocaine Gel Lower Urinary Tract Symptoms Months Prostate biopsy Prostate Cancer Prostate Cancer Risk Management Programme Prostate Cancer Support Group Prostate, lung, colorectal & ovarian cancer screening trial Prostate testing for cancer & treatment Prostate Specific Antigen Patient Quality of Life Qualitative Quantitative Registered Nurse Radical Retro pubic Prostatectomy Standardised Death Rates Transrectal Ultrasound Guided Prostate Biopsy United States preventive services task force United Kingdom Visual Analogue Scale Week Xylocaine Injection
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CHAPTER 1: INTRODUCTION & BACKGROUND 1.1 INTRODUCTION Prostate cancer (PCa) is the second most often-diagnosed cancer in men after lung cancer, and the sixth leading cause of male deaths worldwide (Gomella et al, 2009). In Australia, PCa was the fifth leading cause of death among men in 2008. For ten years prior to that, standardised death rates (SDR) of PCa fell from 37 to 31 deaths per 100,000 (Australian Bureau of Statistics, 2010). PCa has peak prevalence between 60 and 84 years of age with a median age of 81.0 years at death, since PCa occurs and is diagnosed in older men (Wall and Kristjanson, 2005; Australian Bureau of Statistics, 2010).
With our ageing population and increased awareness of health issues, there has been an increase in diagnosis of PCa from screening. Screening for PCa commences with digital rectal examination (DRE) and prostate specific antigen (PSA) blood test, and then if needed examination with Transrectal ultrasound guided prostate biopsy (TRUS-bx). All three tests are required for a definitive diagnosis of PCa. Since its inception in the late 1980s, TRUS- bx has become the “gold standard” for detecting PCa (Akin & Hricak, 2007, p.208). However, little is known about the lived experience of men from the time they are sent for a DRE, followed by a PSA blood test, to the time they receive results of their TRUS-bx investigation.
1.2 DEFINITION OF TERMS A PSA is a blood test that detects glycoprotein (tumor marker) produced by the prostate gland (Chapple et al, 2008; Greene et al, 2009). PSA testing began in the 1
late 1980s yet its results are linked with „false negatives‟ and „false positives‟ and it is an “organ specific rather than a “cancer specific” test (Laws, 2004, p.226; Oliffe, 2006; Chapple et al, 2008). Serum PSA is usually low but can be disturbed by prostatitis, benign prostatic hyperplasia, prostatic or urethral trauma, DRE, TRUSbx, dialysis and ejaculation (Laws, 2004; Green et al, 2009). The drawbacks in having a PSA blood test include increases in doctors‟ appointments, more likelihood in having a TRUS-bx and the accompanying complications, over-diagnosis and overtreatment (Carter, 2003; Lin et al, 2008; Gomella et al, 2009). However, the benefits of having a PSA test may be peace of mind for some men. PSA testing cannot differentiate between aggressive cancers and indolent cancers; therefore it detects PCa that would never have caused harm and may result in unnecessary treatments that may be construed as over-diagnosis and over-treatment (Carter, 2003; Brawley, 2004; Laws, 2004; Welch et al, 2007; Lin et al, 2008; Barry, 2009; Holmberg, 2009; Lee et al, 2009; Mitka, 2009; Vastag, 2009).
A DRE is a physical examination of the prostate gland that is performed via the rectum with the physician‟s gloved and lubricated finger(s), to feel for any lumps or abnormalities (Mayo Clinic, 2010). The DRE has restricted efficacy because the physician cannot reach the whole prostate; only the lateral and posterior sections can be palpated (Laws, 2004; Oliffe, 2006). The use of DRE along with PSA increases detection of PCa (Greene et al, 2009; Meeks et al, 2009).
When PSA is elevated and DRE is abnormal, a TRUS-bx is recommended as the next step. Prophylactic antibiotics are usually prescribed prior to TRUS-bx to ward against infection (Oliffe, 2004a; Bockzko et al, 2006; Horinaga et al, 2006; Turgut et 2
al, 2007). Anaesthesia for the procedure varies from none to any variety of combinations of injections, drugs, creams and gels (Oliffe, 2004a; Oliffe, 2004b; Kravchick et al, 2005; Bockzko et al, 2006; Horinaga et al, 2006; Chapple et al, 2007; Turgut et al, 2007). Some screening departments still give an enema pre biopsy though it is controversial (Oliffe, 2004a; Bockzko et al, 2006; Turgut et al, 2007). The man is placed in the left lateral decubitus position with knees bent up towards his chest (Kravchick et al, 2005; Bockzko et al, 2006; Turgut et al, 2008). An ultrasound probe is inserted into the rectum and is used to take pictures of the prostate and to guide the biopsy needle to the prostate through the rectal wall (Oliffe, 2004a; Oliffe, 2004b; Bockzko et al, 2006). The biopsy needle takes between six and 18 core biopsies of minute tissue samples (Oliffe, 2004b; Oliffe, 2006; Welch et al, 2007). Complications include bleeding, rectal soreness, haemorrhage, haematuria, haematospermia, infection, septicaemia, urinary retention, pelvic pain, decreased libido, sexual impairment, anxiety and stress (Laws, 2004; Oliffe, 2004a; Kravchick et al, 2005; Bockzko et al, 2006; Oliffe, 2006; Chapple et al, 2007).
Currently, the subject of prostate cancer screening is being hotly debated in terms of whether screening of asymptomatic men should be performed.
This debate is
supported by ongoing PCa screening trials in Europe, the UK and the USA. These trials have sought to uncover the benefits versus harm of PCa screening, including mortality benefit, age most appropriate for PCa screening, and what PSA level should trigger a TRUS-bx. Some of these topics have been included and discussed in addendum 8.5.1, a table of PCa screening trial recommendations is available in 8.5.2 and a table of the current trials can be found in addendum 8.5.3. These addenda were
3
essential for the researcher to learn more about this topic prior to conducting the interviews.
1.3 SUMMARY OF BACKGROUND LITERATURE The literature review showed that there is limited research into the lived experience of men as they move through the PCa screening trajectory. While there is informative data concerning the psychosocial issues of PCa from the post-cancer diagnosis and treatment perspective, including men‟s and couples‟ supportive care needs, the effects of treatment on quality of life (QOL) and effects on masculinity, the qualitative aspect of men‟s “feelings” about the screening process, appear to have largely been ignored. (Steginga et al, 2001; Harden 2005; Thaxton et al, 2005; Wall & Kristjanson 2005; Ezer et al, 2006; Arrington 2008; Hedestig et al, 2008; Gomella et al, 2009).
The literature search covered four databases that revealed there were only four authors who had written on the subject. Due to the lack of studies on this topic, they tended to cite each other and therefore it appeared that no new information was available. These studies were limited to Australia, Canada and the U.K. None of these studies focused on the screening aspect only, nor did they ascertain specific pain scores experienced during the TRUS-bx or were within the short timeframe of this study. Furthermore, the review disclosed a lack of knowledge in the area of men‟s needs as they go through PCa screening procedures, in terms of information and education, and preservation of their sense of masculinity, and comfort. The need for education in the area of PCa screening was an extremely important emerging
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issue. Most of these studies allude to the fact of what men do not know. It is important that men have information on the procedure they are about to undergo and the role of those involved, to reduce their distress.
There were many quantitative research studies which have provided useful information concerning PCa screening including the quantitative outcomes of PSA testing, the process of TRUS-bx, including types of anaesthesia used, number of core biopsies taken, types of antibiotics, use of an enema, and side effects (Carey & Korman, 2002; Davis et al, 2002; Mallick et al, 2004; Kravichick et al, 2005; Sheikh et al, 2005; Horinaga, et al, 2006; Lee et al, 2006; Sieber et al, 2007; Turget et al, 2008; Giannarini et al, 2009; Meeks et al, 2009; Schroder et al, 2009). However, the very nature of quantitative research means that it predetermines or prescribes what data is collected, and therefore it removes the context of people's real lives, experiences and feelings from the data collected.
With the increased incidence of PCa, it is vital that the lack of knowledge and understanding, concerning PCa screening is bridged. Doing so will rectify the paucity of information and knowledge of masculine issues, and educate and enlighten health care personnel dealing with this sensitive issue. The chosen methodology for this study ideally positions the researcher to achieve increased understanding and knowledge through Case Study.
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1.4 STUDY SETTING The study is set within the environment where the author has worked as an RN in a Radiology Unit, and where TRUS-bxs were performed. The author was curious as to what the male patients were going through during the PCa screening process. Having spoken to many men after their TRUS-bx, it became evident that their reactions and desire to discuss what had happened to them varied. Some men gave the simplest of responses while others wanted in-depth discussions concerning urine output, bowel movement and sexual activity. There could be many reasons for these differences in responses to PCa screening. Some men may have had prior knowledge of what would occur and know the expected outcomes. Others may have accepted the procedure, as a normal part of preserving their health. However, it may have been a case of displaying stoicism in the face of an uncomfortable situation.
It had occurred to the author that these men must surely go through incredible stress, anxiety and uncertainty. Leading her to consider these questions - “How does it feel to be a man on the healthcare “trajectory” from PSA to TRUS-bx?”, “How does it impact on their lives?”, “Do men have a need that is not met or are Radiology and other screening departments doing everything they can to assist these men through the screening process?” - Stake (1995) and Polit and Beck (2008) recommend that the research question come from an interest in the topic or clinical experience.
1.5 AIM AND OBJECTIVES OF THE STUDY The aim of this study was to determine the subjective experiences of 6-10 men from DRE and PSA, to TRUS-bx to establish what these men‟s experiences were and the meaning behind them. The study‟s objectives were to: 6
Identify what men‟s needs were at the time of screening. Examine the protocols in relation to their needs. Identify appropriate educational and service provision.
1.6 SIGNIFICANCE OF THE RESEARCH The significance of this study for the author was two-fold: firstly, to uncover what the experience of being investigated for PCa was like for men; and secondly, to identify whether procedures in the department, including the overall education and information given, was in line with patients‟ actual needs. It was hoped that men are provided with a good information concerning the screening process and why each step was necessary.
The benefits of uncovering the experiences of men as they go through the PCa screening trajectory are multifaceted. Firstly, in exploring the meaning of this experience of men, it was hoped to enlighten medical and nursing staff of the difficulties faced by men at the time of screening so they could be made aware of their specific requirements. Secondly, exposing men‟s physical educational and resource needs and what facilities, programs or education need to be in place, has the potential to make this investigative period for PCa, less stressful for men and their families.
1.7 RESEARCH METHODOLOGY AND FINDINGS This study was based in the qualitative paradigm because this particular paradigm makes it possible to acquire an in-depth understanding of a lived “human 7
experience” (Patton, 2002; DePoy & Gitlin 2005, pp.18-19; Schneider et al, 2007; p.24; Polit & Beck, 2008). While other methodologies were considered, the Case Study was best suited to describe individuals‟ experiences using a variety of data that included semi-structured open-ended interview questions, procedural documentation and pain scores, and was within the parameters set by the researcher.
1.8 SUMMARY Nurses involved in this area of healthcare need to be aware of the issues emerging from this study. Investigation of these concerns may lead to improvement in care for men during their PCa screening. Poor communication about PCa may be due to the manner in which information was being conveyed that may not represent how males generally learn or are educated. This study was intent on bridging the gap of knowledge revealed in the literature review.
Chapter Two investigates the literature within the context of PCa screening with a description of the literature search, results, analysis and critique of articles and analysis of the findings. A thematic analysis revealed the five themes indicating men‟s lack of information and education about their bodies and the process of PCa screening, fear of pain, suffering in „silence‟, communication, and the stoic, masculine traits that men bring into the PCa screening process (for further details see Appendix 8.2).
Chapter Three explains paradigms, the decision-making process that leads to the use of a multiple embedded Case Study and this study‟s design. The research method,
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setting, participants, semi-structured open-ended interview question data collection method, thematic analysis, „trustworthiness‟ and ethical considerations are also explained (for further details see Appendix 8.3).
The next chapter, Chapter Four, focuses on the findings of this study with an overview of the participants‟ demographics and outcomes. The thematic analysis uncovered the following three themes: „Masculine Behaviour‟, „Fear, Shock and Emotion‟ and „Communication of Information‟. These were revealed using verbatim comments made by ten men (for further details see Appendix 8.4).
Chapter Five expands on the meaning of masculinity and discusses the findings of this study. In particular, it looks at the findings of unique significance that this study has revealed from the perspective of concurrence or opposition to the literature.
Chapter Six summarises this thesis in a study synopsis and offers clinical implications and recommendations that include education and service provision based on the original aim and objectives of this study. The limitations of this study are recognised and recommendations for future research are offered before the conclusion.
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CHAPTER 2: LITERATURE REVIEW 2.1 INTRODUCTION The purpose of this chapter is to explore the research literature on PCa screening, to determine the experience of men going through the process from DRE and PSA to TRUS-bx results and to uncover their needs at that time.
This review was built on the concept of gender issues as only men have PCa. Each man enters PCa screening with his own version of masculinity, and the ways in which he views this clinical experience.
The review scrutinises the available
literature using a thematic framework. Recurring themes discovered from each of the study‟s findings that concern the screening process from the individual‟s point of view were revealed. The literature search process and how studies were chosen is described and the process of analysis in each study for strengths and weaknesses is discussed. Themes are explored and a discussion of findings is offered. This review chapter is organised under the subheadings of method, findings, discussion and conclusion with appendices available for additional information and expansion of concepts.
2.2 METHOD A comprehensive literature search was undertaken within the area of interest, including electronic databases, journals, and books for primary (Munhall, 2007), and secondary literature (Polit & Beck, 2008). Hand searching through reference lists for descendent sources (Polit & Beck, 2008) was also conducted. The literature search commenced using CINAHL, Medline, PsychInfo and Informit databases, using the 10
same search limits in the English language for studies published between 1999-2009. In all, 11 searches in each of the four databases were conducted. The key word searches included prostate, DRE, PSA, TRUS-bx, quality of life (QOL), PCa screening, men‟s health, anxiety and illness, PCa and sexuality, gender role and qualitative research (see Appendix 8.2.1 for tabled search results and decision trail). Before the search began Elsevier e-mail alerts were set up requesting relevant information from journals involving urology, gerontology, psychology, oncology and cancer. However, no further relevant studies were found from those journals.
2.2.1 Search Results & Selection This search elicited 695 sources. After reading the abstracts, 541 articles were excluded as their focus was on prostate cancer treatment, treatment side effects, or prostate cancer support groups (PCSG). An easy to follow flow chart is available in Appendix 8.2.2 to track the decision-making process of relevant articles. Bluff and Cluet (2006), explain the process of „active‟ reading. These elements of skim and focused reading repeatedly, pulling out different facets of each article, asking „where, when, what, why and how‟ questions were used. Critically thinking about the issues from the perspective of the participants, expanded the researcher‟s insight into the PCa screening experience.
Consequently, 37 articles were selected to be read in full. After reading these articles several times, a further 28 articles were excluded as some were concerned with how men learn, or about men with PCa but did not cover the topic of PCa „screening‟. Others excluded were related to quantitative expressions of anxiety, and health related quality of life (HRQOL), risk of suicide, and ongoing PCa trials. Some 11
studies were excluded due to not being primary sources (Polit & Beck, 2008). Excluded articles did not consider PCa screening from the human experience. However, their content and political stances in highlighting ongoing debates on PCa screening did provide helpful insights into the topic for the author, and formed a substantive background of information (Polit & Beck, 2008). The final nine studies included (Appendix 8.2.3 for matrix of included articles) best described the human experiences of PCa screening through narrative and observation (Patton, 2002; DePoy & Gatlin, 2005; Schneider et al, 2007; Polit & Beck, 2008). A search through the reference list of all nine studies revealed no further studies. The references listed studies that were outside the date criteria, or were concerned with the current debate, decision making, treatment, research methods, anaesthesia for TRUS-bx and contained other studies already found.
2.2.2 Analysis & Appraisal of Included Articles Many authors have written on the topic of critical analysis of research articles. In the case of qualitative articles the general focus is: title, journal, author, abstract, phenomena, structure of the study, conceptual underpinnings, method, sample, data collection,
findings,
and
analysis,
discussion,
rigour,
implications
and
recommendations (Sandalowski & Barroso, 2002; Bluff & Cluet, 2006; Schneider et al, 2007; Polit & Beck, 2008).
The „critical review guidelines‟ suggested by Schneider et al (2007) were adapted as critical analysis questions to assess the strengths and weaknesses of the research process of each study (Appendix 8.2.4)
A binary evaluation of each question
resulted in the final critical review for critical appraisal (Appendix 8.2.5) and for 12
analysis of critical appraisal (Appendix 8.2.6). An explanation of the critique scoring is further explained on pages 14 and 15.
2.2.3 Summary & Critique of Included Literature This review sought experiences of men who went through the process of PCa screening, and before they were diagnosed. Only Chapple, Ziebland, Hewitson and McPherson (2008) conducted their investigation before participants had received a diagnosis of PCa. This latter study interviewed 30 men who had been tested via a PSA test (only) or were considering it. The remaining eight studies included in this review interviewed men who had been through the screening process, diagnosed with PCa, and contained descriptions of the men‟s perspective of the screening trajectory.
Four authors reported the qualitative aspects of the screening process (Oliffe, Chapple, Broom and Gray) alone or with other associates. These authors have each written a number of articles on the topic. Due to the paucity of studies in this area, they tend to cite each other.
There are three ethnographic studies set in Australia by Oliffe (2004a, 2004b, 2006) on the issue of PCa screening. All contain themes of “pre screening” “screening” “post screening”, or similar terminology. These articles include rich, vivid text, a good interpretation of the stereotypical, “Australian Male” and cover common, socially accepted male behaviour traits. Rigour was established through member checks, observation and field notes, as well as giving the study results to 150 men in four Prostate Cancer Support Groups (PCSG) who supported the findings of the analysis. It is unclear if the first study in 2004 was the catalyst for the following 13
studies, or if they were all part of the one longitudinal ethnographic study, reported slightly differently over the years. See Table 8.2.7 for further details.
A study by Oliffe and Thorne (2007) varies from the others in that it concentrates on the communication between male patients and male doctors and specialists, in relation to expressions of masculinities. This topic is discussed further in section 2.3.5. One problem with this study was that five men from the original study were used for member checks but the authors did not state the country of origin of these men, so it was unclear which experience they were referring to. In addition, this study is only one side of the “communication dyad” discussed.
After critical appraisal, the strongest studies from a methodological perspective were judged by this author to be Oliffe (2004a) and Oliffe and Thorne (2007). These studies were only lacking in the area of identifying and addressing ethical issues (2007), and identifying and acknowledging limitations of the study (2004a). In fact, the questions on ethics were poorly addressed by all studies. The only studies to acknowledge ethical issues were Chapple et al (2007 & 2008 studies) and Oliffe (2004a). Anonymity was only mentioned by four of the studies, and confidentiality in five of the studies. While research title and objectives were clear in all studies, the abstracts were not. According to the guidelines used to critique the studies reviewed, three studies were unclear in their abstracts about information concerning study aim, and research approach, data collection, analysis, and findings. Similarly, four of the studies did not say how they judged scientific rigour in terms of credibility, audit trail, confirmability or fittingness.
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All of the included studies were strong in the areas of the phenomenon being a human experience, grounded in a natural setting and relevant to nursing. Research question, data collection, design and analysis were also extremely strong. So too were most of the eight guideline questions of the critique relating to the structure of the studies that involved participant selection, theoretical framework, method, data collection and limitations. Findings too were represented well with only Gray et al (2000) not relating findings to theory, and Chapple et al (2007) not demonstrating method and audit trail on data analysis.
2.2.4 Analysis of the Findings of the Reviewed Studies Themes were derived by the author from an intense period of familiarisation with the studies findings, until consistent concerns of men‟s issues emerged from the literature. Sub themes evolved by manually pulling out key phrases that best described each study‟s findings; a word was given to the meaning of each phrase. These words were grouped by similar meanings, from which sub themes were derived and summarised in Appendix Table 8.2.8.
2.3 FINDINGS The themes that clearly emerged from the literature findings to express what it was like for a man going through this process were “Prostate Cancer Screening”, “Feelings and Emotions”, “Variations of Masculinity”, “Coping with Prostate Cancer Information” and “Interactions with Doctors and Specialists”.
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2.3.1 Prostate Cancer (PCa) Screening Findings from eight of the studies inform the theme of PCa screening. It was found that few men actively initiated PCa screening, instead their General Practitioner (GP) as part of a regular check up introduced it, though for some urinary symptoms were the catalyst and a differential diagnosis was being investigated (Gray et al, 2000; Oliffe, 2006; Oliffe & Thorne, 2007; Chapple et al, 2008). Lower urinary tract symptoms (LUTS) including nocturia and erectile dysfunction (ED) were often reasons for partners intervening and suggesting men seek medical advice while for others it was a family history (Oliffe, 2006; Oliffe & Thorne, 2007). Female partners, friends, colleagues and media, including television, newspapers and books, had also persuaded men to seek PCa screening (Oliffe, 2006; Chapple et al, 2008).
For some, PCa screening was seen as “responsible health behaviour”, believing that it was better to do it “sooner than later”. Others saw screening as a hereditary or civil duty and used words like „should‟ and „ought‟ that have a more moral implication (Chapple et al, 2008, p. 58).
2.3.1.1 Digital Rectal Examination (DRE) Screening often began with DRE, during which men felt “reluctant” and “unprepared” for the invasion of the anal penetration, seeing it as “unmanly” (Oliffe, 2006, p. 5). Broom‟s (2004) study explains the stereotypical Australian male and masculinity, using the participants‟ “voice” to create rich descriptive text from both the negative and positive points of view. However, there was a low response rate to this study (37% of men approached) which could indicate the issues of masculine ideals, including reluctance to discuss PCa with others. One of these participants 16
discussing the fear of PCa screening stated that friends of his were “terrified” about the “finger up the bum bit” (Broom, 2004, p.9; Oliffe, 2004b, p.3).
2.3.1.2 Prostate Specific Antigen (PSA) Emphasised in the findings of the reviewed studies was that the PSA test was often seen by men, and advocated by GPs, as a “simple blood test” or “preventative health care”, with no explanation of the unreliability or implications involved. Men either agreed to have a test that they knew nothing about and did not understand, or found out that they had already had a PSA test along with other routine blood tests without knowing it (Gray et al, 2000, Oliffe, 2006, p. 5; Oliffe & Thorne, 2007, p. 154; Chapple et al, 2008, p.58).
Chapple et al‟s (2008, pp. 58-61 and Gray et al, 2000) study explained how blasé we have become as a society when it comes to “routine” blood tests, and that patients seldom know the full repercussions. This study by Chapple et al (2008) was a followup of a previous study prior to the introduction of the Prostate Cancer Risk Management Programme (PCRMP) in the U.K., in which men were given educational information prior to PCa screening. This study was an excellent example of participants‟ narrative, their meanings, and description and used a qualitative method both before and after the intervention. It also alluded to current PCa screening debates. The limitations were that it was unknown what discussions participants had previously with their wife, doctor or others, or the way that information was emphasised. There was a poor cultural mix with 29 white men and only one black Caribbean man, and participants were mostly professionals including three doctors. The post-intervention results indicated that the men were still unsure as 17
to whether to embark on PSA testing, despite the education intervention to educate them on the topic. Other men stated that their GP had advised against PSA testing on asymptomatic men (Chapple et al, 2008).
2.3.1.3 Trans Rectal Ultrasound Guided Biopsy (Trus-bx) TRUS-bx was seen as the next “logical” step on the screening trajectory and was taken up by some men as being urgent in the quest for results and treatment (Oliffe, 2004a, pp. 6-7). However, the majority of men were non-plussed to find that TRUSbx was an expected consequence of having a high PSA (Oliffe, 2006).
The period leading up to the TRUS-bx was filled with anxiety and uncertainty in regard to the invasiveness of the test and the concern over results, with men depicting this period as being “nerve racking” and frightening (Oliffe, 2004a, p.6; Chapple et al, 2007, p. 216). The sight of the equipment and the passive foetal position “pants down” triggered much high anxiety and “vulnerability”, where men felt that they had “lost control” as their bodies became “public” and their functions “inelegantly” moved beyond their influence (Oliffe, 2004a, p. 6; Oliffe, 2004b, p.4). One man explained the embarrassments of having an enema prior to his biopsy and of wearing a gown that was too small with his “bum sticking out”, then having a nurse in front of him and two blokes behind him making him feel “embarrassed” and “shameful” (Broom, 2004, p. 8). The sound of the biopsy gun was a common theme like a gun “going off” and with each bang, they felt the “grabbing” sensation of the biopsy and as time went on the anxiety grew, increasing the pain with each “shot” (Oliffe, 2004b; Chapple et al, 2007, p. 217).
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While the PSA was seen as just another blood test, it can be seen why the other two tests required for a definitive diagnosis, DRE and TRUS-bx (with the requirement of anal penetration), were found to be so confronting.
2.3.2 Feelings & Emotions This theme will concentrate on findings from five studies involving feelings and emotions particularly in connection with sexuality and anal penetration, embarrassment, anxiety, fear and pain.
2.3.2.1 Sexuality and Anal Penetration Anal penetration used in the DRE and TRUS-bx was found to be an affront to heterosexual masculinity. Worse than pain, it affected their “pride”, rendered them “embarrassed” and they said it was “demeaning”, “humiliating”, undignified and an “ordeal” (Broom, 2004 p.9; Oliffe, 2004a, p.7; Oliffe, 2004b, p.5; Chapple et al, 2007, pp. 217-218). Anal penetration also raised the nuance of homoerotic conduct that lies in complete conflict with dominant masculinity that sees the penis, as the focal point in heterosexual relationships, and the male as penetrator not the penetratee (Broom, 2004). Anal penetration was seen as an invasion which was quite unnerving for these heterosexual men who confirmed that blokes do not “go for that”, do not enjoy that “sort of stuff”, and that it is degrading on “this end” (Oliffe, 2004b, p.4).
Gray et al (2002, p. 45) described the penis as being a “cultural artefact of gender performance”, where masculinity is intimidated by erectile dysfunction (ED) and incontinence. The three men in their study were chosen because of their “hegemonic 19
masculinity”, and openness to interviewing. While other authors have reported men‟s lack of communication concerning their health issues, this article showed three men who were quite the opposite. They could otherwise be known as „deviant‟ cases being so forthcoming in the interviews. Could the question be asked that this openness displayed the opposite of the “hegemonic” masculinity that Gray et al (2002) were attempting to prove?
2.3.2.2 Embarrassment, Anxiety and Fear Most of the studies in this review mentioned the embarrassment suffered by men while undergoing PCa screening. Dominant masculinity prevailed with the use of “stoic emotional display”, hiding their feelings of anxiety, doubt and defencelessness particularly when faced with the “indignity” of TRUS-bx where the “public” face of masculinity prevailed (Oliffe, 2004a, p.7; Oliffe, 2004b, pp. 3-4; Chapple et al, 2007, p. 217). Anxiety was increased at the point of biopsy by the fact that the procedural physician was unknown to these men until the time of the biopsy (Oliffe, 2004a, p. 7). A small number of men voiced their opinions about friends who were terrified and refused screening despite having a family history, such was their fear (Broom, 2004).
2.3.2.3 Pain The ability to sustain or tolerate the discomfort of TRUS-bx was viewed as a form of “endurance”, sweating profusely and being close to “blacking out” and one man forced the doctor to stop (Oliffe, 2004a; Chapple et al, 2007, p. 217). It was pointed out by Chapple et al (2007, p.217) that pain was received in various ways in different cultures. Stoicism and denial of pain is more prevalent in the Anglo-Saxon and Irish 20
culture, as is the socially expected norm that men are “tough” and to prove it they cover their feelings. This study of fifty men by Chapple et al (2007) on the subject of TRUS-bx had a lack of manual workers and minority groups. However, it was strong in descriptive terms and results from Chapple et al‟s earlier studies, were remarkably similar concerning anxiety and pain. It could be argued, however, that some of the interviews were conducted some time after their biopsy, and men may have forgotten the details of the procedure.
Most of the biopsies in these studies were administered without anaesthetic though Oliffe (2004a) makes the point that in Australia, anaesthetic with TRUS-bx has been a Medicare rebateable item in all states since 1998. What some men in this study were told by their doctor and what actually happened were quite different with descriptions like, the “worst pain” ever, “most uncomfortable” experience and “pretty dam” painful, yet their physicians had told them they would not need an anaesthetic (Oliffe, 2004a, p. 8). However, Oliffe (2004a) did not state exactly what the doctors had told the participants. What was the education gap?
Oliffe (2004b) points out that with such variations of pain being reported, it is no wonder that doctors have difficulty anticipating how each man will react. However, for others the honesty of their doctor in telling them that it was going to hurt seemed to give them the courage to “go along with it”. Here we see participants‟ positive reactions to clinical advice as “expert” (Oliffe, 2004a, p.9). Of the 30 participants in Oliffe‟s (2004b, p.5) research, only one told his procedural doctor about the pain. Others stated they focused on other things so the physician could “get on with it” and
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not be held up, wanting it to end, or stated they did not say anything because of the “authority” figure the doctor represented which “I was brought up to respect”.
One man reported an effect on his sex life including loss of interest after his TRUSbx where previously there had been no problem. Another had a vein on his rectum sliced and lost vast quantities of blood, while others told of anal soreness, rectal bleeding, severe cystitis and septicaemia (Oliffe, 2004a; Chapple et al, 2007). Another man brought up the topic of haematospermia, which “traumatized” him for many weeks, not having been told of its possibility (Chapple et al, 2007, p. 218).
Sexuality and anal penetration, embarrassment, anxiety, fear and pain were the new feelings and emotions that men had to deal with while going through PCa screening. Men used a variety of masculine behaviours to combat and deal with these invasive and sensitive issues.
2.3.3 Variations of Masculinity This section discusses issues surrounding masculinity and masculine behaviour; male communication; and code of silence; associated with Pca screening, which were highlighted throughout seven of the selected studies.
2.3.3.1 Masculinity and Masculine Behaviour There are many different associations and masculine links made to the prostate with its function of semen supply, the degradation of screening and anal penetration, as well as the relationships between illness and weakness (Broom, 2004). In this study Broom‟s (2004, p. 5) participants described their beliefs around men and health or 22
illness. There was a clear notion of “strength”, the “macho” “breadwinner”, whose problem-solving behaviour allows them to “figure it out” themselves rather than seek help from a physician. More typical were the traits of the Australian male with their expectations of being “well” and “strong” because “men don‟t have problems”, “we don‟t have any problems down there”, where men are proud to say that they have not been to a doctor for “25 years” and the subject of the prostate is taboo. Broom (2004, p. 73) also states that a subgroup of the study cohort, while admitting that “boys are brought up not to cry” and to be “macho”, still believe that approach is “stupid”. They acknowledge that while their sexuality was an important part of “being a man”, it should not stop them from seeking medical help (Broom, 2004, p.79). One man in the latter report thought that the idea of men being reluctant to seek medical help was all “propaganda” and that men‟s health issues are difficult because they are less “well documented and thought out” (Broom, 2004, p.79).
Gray et al (2002, p.45) stated that hegemonic masculinity primarily took the form of “Euro-American upper class, well educated, heterosexual men”. It included traits such as “domination actively performed through competition, aggression, bodily strength,
stoicism,
heterosexism,
homophobia,
and
misogyny”.
Dominant
expressions of “put up” with and “handle” it were simultaneously used by men, who also commented that the TRUS-bx was “traumatic” and that they were “hanging on for grim death” (Oliffe, 2004a, p.7). The fact that women were in the room made some even more careful not to “make a fool of myself” (Chapple et al, 2007, p. 217).
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2.3.3.2 Male Communication Often it was easier for men to deal with the “facts” but when it came to their feelings this was another matter and they did not want to “go there” (Gray et al, 2000, p. 543). Some men could not get “in-depth” with conversations on PCa. This inability to discuss feelings could possibly be more to do with how these men have always dealt with emotional problems, or not wanting their PCa to be a focus (Gray et al, 2000, p. 543). Findings of the study of 34 men and their spouses, by Gray et al (2000), encompassed many emotions and adaptations that couples faced. They stated that men‟s efforts to control their feelings became more difficult over time with some breaking out in “anger” retreating to their “caves” to allow themselves time to ponder the extent of their situation while being glad of their wives‟ recognition of their need to retreat (Gray et al, 2000, p. 542). They used humour to offset difficult emotions and kept things light, these attributes being preferred to gloom (Gray et al, 2000).
2.3.3.3 “Code of Silence” The “code of silence” extended to men in most studies with participants placing restrictions on how many people and who should know about their PCa (Gray et al, 2000; Gray et al, 2002; Broom 2004, p. 83). Mostly men did not even tell friends and would have chosen only to talk to their spouse due to embarrassment and the “stigma” of anal penetration. However, they realised the importance it had to other family members with the “right to know” and “obligation” to disclose particularly to parents and children (Gray et al, 2000, p. 538; Broom, 2004, p. 81). They did not want to reveal their disease to others who were going through their own problems or those considered to be “prankster” and “gossips” (Gray et al, 2000, p. 536).
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This theme showed how masculine behaviour and communication were the ways in which men hide their feelings and emotions in order to maintain their masculinity. Not wanting to talk about the possibility of illness, the „code of silence‟ being the final line of resistance stopping personal information and stigmatisation associated with PCa screening from becoming known.
2.3.4 Coping with Prostate Cancer Information This theme discusses the findings of eight studies on the way in which participants dealt with Pca information.
It incorporates Pca information, knowledge and
researching; and facing illness.
2.3.4.1 Prostate Cancer Information, Knowledge and Research Many men in these studies had little or no knowledge of PSA or its implications (Gray et al, 2002; Oliffe, 2006; Chapple et al, 2007). Three of the participants in Chapple et al‟s (2008, p.60) study were doctors who were labelled as “deviants” because of their expert knowledge on the advantages and disadvantages of PSA testing. All three decided against having screening as they were aware of the debate over the effectiveness of PCa screening and treatment.
Another participant in
Chapple et al‟s (2008) study was warned off by his GP and told that the PSA was “unreliable” and may lead to a “painful” TRUS-bx.
For some men, PCa screening was the first time they found out about their prostate. One man stated that he felt a “goose” because he knew nothing about this “very important part” of his body and his life. He blamed the education system for schooling that did not even mention the reproductive system. He believed that the 25
symptoms he experienced were part of the aging process and not something he could talk about to another man (Broom, 2004, p. 81). He added that if another man had mentioned it to him, he would have been “extremely surprised”.
According to Chapple et al (2008, and 2007) not enough time was available during consultation with GPs to explain all of the implications of PSA. Appointments were often “rushed”, leaving men unclear of advantages and disadvantages though others were made aware of the variability of “false positive and false negative” results.
For most men with a positive TRUS-bx result the next step was to assemble as much information as they could before their Urologist appointment, where treatment options would be discussed (Gray et al, 2000). Believing that “knowledge is power”, couples used a number of resources including the internet, cancer society, and support groups to talk to other men who had gone through the experience (Gray et al, 2000, p. 536). Men learnt PCa terminology and used it in their conversations with doctors; this outcome is in line with masculine traits of “problem solving”, independence and active involvement in their PCa, enabling educated decisionmaking (Gray et al, 2000, p. 536; Oliffe & Thorne, 2007, pp.154-158).
There were other men though who rued the fact that they had not done any research that left them ill prepared for the realities of PCa (Oliffe & Thorne, 2007). However, for some the information was “overwhelming”, leaving couples bewildered and in need of guidance to find their way through the confusion (Gray et al, 2000, p. 536).
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2.3.4.2 Facing Illness The participants in all studies had an elevated PSA and/or abnormal DRE. When results were abnormal and fears faced, some participants were “compelled” to move forward in the screening trajectory to find out if they had PCa (Oliffe, 2006, p. 5). There was little time to process the information because the momentum gathered from one test to another, leaving men feeling “stressed” and “anxious” (Oliffe, 2006, p. 6). The often-supported fact of PSA test inaccuracies for some was a glimpse of hope that a “mistake with the numbers” had been made (Oliffe, 2004a, p. 6). Overall, couples dealt with the ordeal as a “team”, often bringing them nearer, rekindling their relationships and opening up further lines of communication, where men were “grateful” to their wives for support and help, and lack of “embarrassment” (Gray et al, 2000, pp. 540-542).
2.3.5 Interactions with Doctors and Specialists Five of the reviewed studies elaborated on the complexities of interactions between participants and medical practitioners. Oliffe and Thorne (2007) point out that the complex and uncertain issues surrounding PCa made the patient/physician relationship important particularly with the dominance and masculinity associated with medicine and the professional “authority” of doctors. Communication between physician and patient required “trust” and “respect” in order to overcome the awkwardness associated with the personal nature of PCa (Oliffe & Thorne, 2007, p. 155).
Many found that humour was the best way to dispel the embarrassment and unease. According to Oliffe and Thorne (2007), men connected with their doctor‟s bedside 27
manner, attentiveness and relaxing manner. They further discussed the use of humour as assisting in the interruption of authority and aggression associated with the intersection of two males, thereby protecting the participants from the alien vulnerability associated with PCa screening and allowing for “time out” from their cancer for a joke (Oliffe & Thorne, 2007, p. 157).
Gray et al‟s (2000, p. 536) study found some participants who were having PSA tests were grateful that their GP had encouraged the PSA test, suggested it, or offered it as something to consider; this type of encouragement was seen as “helpful”. Quite a few other men who did not know about the PSA test option, were not pleased that their GP had not informed them of the test after they had been informed of PCa screening by other people. Other men in this research stated that they were displeased of the fact that they did have regular PSA tests but that their GP did not respond when their PSA levels were high. One man, who found out from another source about his high PSA, found it disappointing that his physician had not explained the facts, or referred him on for further testing (Gray et al, 2000). Similarly, Oliffe and Thorne (2007, p.155) found that men who had been discouraged from having PSA testing were “significantly dissatisfied” when they were later to find they had quite developed PCa.
Faith and trust in their specialist was of great importance and helped most men. Even if they had done their own research, it brought greater comfort in their own decisionmaking (Gray et al, 2000, p. 536). Men expressed awe at the “skill of the surgeon” who had done their biopsy. Participants in Chapple et al‟s (2007, p.217) study also described the proficiency of doctors and other staff as well as the care they 28
expressed. In contrast, while discussing the issue of impotence with their specialist, one couple was told that you “can‟t have sex from a coffin...especially with the lid screwed on” which they found confronting from someone they had only just met (Chapple et al, 2007, p.219).
Oliffe and Thorne (2007) argue that because there was no prior relationship with the urological specialist the first interaction is an anxious and perilous time, particularly as it would be this doctor, who would give them the definitive diagnosis. At this point, “time” also becomes an issue as participants required information and time to discuss and digest the diagnosis. In addition, they maintained “control” while specialists pushed for decisions on treatments that men did not want to make recklessly (Oliffe & Thorne, 2007, p.155).
2.4 DISCUSSION In terms of strengths, the qualitative approach used in these studies clearly showed that narrative collected through interviews had the ability to produce rich descriptive text that best expressed these participants‟ experiences of PCa screening. Of particular interest was Gray et al‟s (2002) study, which comprised of a number of interviews over time, revealing the changes in attitudes and beliefs as these men moved along the screening trajectory.
The topic of PCa screening showed that DRE and TRUS-bx were by far the most difficult to accept with their anal penetration, stigma, pain and emotional effects attached to anal penetration. PCa screening is centred around men‟s genitals and
29
masculine sense of sexuality and is therefore, an extremely sensitive subject (Broom, 2004; Oliffe, 2004b; Oliffe, 2006).
From the results of Chapple et al‟s (2008) research, it was evident that even after an information intervention, men were still unaware of the relevance of PSA testing. Chapple et al (2008) found that men were still using morally committed words such as “ought” and “should” (have a test), that sounded like they still saw PSA testing as a moral duty or a healthy responsible thing to do, even after the education intervention. It was found that these participants were also told very little about PSA testing by their GP. Having a PSA test that men did not know about, or fully understand raised strong issues of informed consent. The full implications of screening were not realised when PSA tests were included with other blood tests.
Oliffe (2004a & 2006), Oliffe and Thorne (2007) and Chapple et al (2007 & 2008) have stated that when men were unaware that they were having a blood test to screen for PCa, they were unwittingly committing to further tests should those results return abnormal. Similarly, men who did know they were being screened but were not told of the consequences of abnormal results were also unknowingly entering into the PCa screening continuum. This commitment related to men‟s strong desire to know if they did have PCa or not. Participants in all of the studies were committed to find out if they had PCa once they knew that early tests were abnormal; for some it was a matter of urgency.
Oliffe (2004a, & 2004b) discussed the fact that general anaesthetic is a Medicare rebateable item and the topic of costs deserves comment. On top of normal 30
procedural costs for TRUS-bx, further staff related costs would apply if an anaesthetic were used. These costs would include an anaesthetist, anaesthetic nurse, recovery nurse, orderly, extra drugs, and pre-procedure anaesthetic examination that would all add to costs and time. It would also limit the number of procedures performed per day, as each TRUS-bx would take longer with anaesthetic, limiting availability of procedural rooms.
Oliffe (2004b) poses the question of non-pharmacological interventions for pain and this is something worth examining further. Many other authors have discussed the issue of various types of local anaesthetic, their effectiveness, cost, and side effects; but these issues are outside of this study‟s scope. However, nothing will happen in respect to pain if men are going to keep their “code of silence” and doctors do not therefore understand the extent of their pain and needs. Building on this theme, there are strong links to masculine traits and stoic behaviour where men acted „macho‟ and hid the pain, discomfort and embarrassment. These masculine traits could particularly be seen in older men and strongly represented in the Australian male (Broom, 2004). However, as men moved through the various tests it showed some renegotiation as independence and control were removed and issues of life or death replaced them. The fact that men did not report pain showed high involvement in dominant masculinity in the face of a male counterpart in the form of physicians, radiographers, radiologists and urologists. However, by not reporting pain they set up the situation where doctors believed that the pain was minor and so did not offer pain relief. The stress and anxiety associated with anal penetration and unfamiliar position of being receptive and vulnerable was also believed to increase pain (Oliffe, 2004a; Chapple, 2007). 31
The communication “dyad” of doctors and participants also posed some interesting innuendos and switches of power, authority and knowledge. It moved from men who “don‟t need to see a doctor” to men who were researching PCa, a disease that they may need further painful tests for (or could kill them), and for which treatment may leave them impotent and incontinent. The journey of PCa screening was rendered “do-able” by using humour and shifts in power.
There was an interesting disparity in the “code of silence” with men not wanting to talk about their prostate or let anyone know about their screening and diagnosis. Yet when it was time to research the disease and educate themselves, one of the resources they used were prostate cancer support groups (PCSGs). Men who had used these groups for information were later reticent to talk to others, particularly not wanting to get “personal” about incontinence and ED.
The topic of information was strong in eight of the studies. Men discussed their lack of knowledge on the subject that they stated was often embarrassing because they did not know about their own bodies. Most demonstrated an eagerness to research and learn about their PCa, and confidently used appropriate terms in discussions with medical personnel. The use of these terms and humour appeared to relieve some of the stress of medical visits. It also brought the relationship of patient and practitioner down to an even level of man-to-man, reducing the tension and forms of hierarchy.
2.5 SUMMARY This literature review highlights the paucity of authors involved in qualitative research on PCa screening and therefore the dearth of qualitative studies. The studies 32
in this review came from Australia, Canada and the UK; this researcher had to wonder where the rest of the English-speaking world is in terms of qualitative research involving PCa screening. The lack of qualitative studies centred in PCa screening reinforced the need for this study in illuminating the process of PCa screening and extrapolating men‟s needs in terms of comfort and education during the screening process. This review has unearthed important themes associated with PCa screening with the focus found to be on: Prostate Cancer Screening-DRE, PSA, TRUS-bx. Feelings and Emotions-sexuality and anal penetration, embarrassment, anxiety and fear, pain. Variations of Masculinity-masculinity and masculine behaviour, male communication, „code of silence‟. Coping with Prostate Cancer Information-PCa information, knowledge and research, facing illness. Interactions with Doctors and Specialists. It is vital that the concerns and needs of men going through PCa screening are discovered and resolved appropriately, allowing them to maintain their strong masculine identity and remain in control.
The next chapter describes the methodology used in this thesis and the ethical considerations involved.
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CHAPTER 3: METHODOLOGY 3.1 Introduction In order to unearth the lived experience of men going through PCa screening from PSA and DRE to TRUS-bx, this study conducted open-ended semi-structured interviews with ten men who had just completed the three tests required for a definitive diagnosis of PCa. The use of the qualitative paradigm and a multiple embedded Case Study to answer the question, enabled this study to obtain a profound appreciation of the „real life‟ experience of the participants involved.
This chapter firstly discusses the paradigmatic origins, methodological decisionmaking, case study and study design used and explains the reasoning behind their application. Secondly, it details the research method including the setting, participants, data collection, and data analysis. Consideration of research trustworthiness and ethical issues follows.
3.2 Paradigm According to Hentz (2007, p.356) and Yin (2003, pp. 5-9) the “question” and literature review of a study are important determinants when selecting a paradigm and methodology. A paradigm is a “world view” or the basis of philosophies on which we understand the complexities of the real world. Generally they fall into two categories, qualitative and quantitative (Stake, 2000; Travers, 2001; Patton, 2002, pp. 12-17; Schneider et al, 2007, p. 21; Polit & Beck, 2008).
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The quantitative paradigm employs numbers and measures to capture the data that is set in predetermined categories (Patton, 2002). The use of limited questions allows for large numbers of participant involvement, and results in a statistical data set that is generalisable. The focus is the instrument used to measure the data and the key is the quality of the measurement instrument that it is used according to specific set procedures (Patton, 2002). The quantitative paradigm did not fit with the question of this study nor did the required outcomes with its aim of discovering men‟s life experiences of PCa screening.
The qualitative paradigm assumes an emphasis on in-depth understanding of the “human experience” as it is lived, where the researcher uses inductive reasoning and flexible procedures that evolve in the field (Patton, 2002; DePoy & Gitlin, 2005; pp.18-19; Schneider et al, 2007, p.24; Polit & Beck, 2008).
DePoy and Gitlin (2005, pp. 50-53) explain that questions are deductively expounded from theoretical principles that try to “describe a phenomena, explore relationships among phenomena, or test existing theory development” in relation to the question. These types of questions suggest three levels of theory advancement and knowledge, which extend from, “Level 1 which describes a phenomenon, Level 2 that explores relationships among phenomena, and Level 3 which tests existing theory” (DePoy & Gitlin 2005, p. 50).
Level 1 questions are intended to extract a description of a topic or population where little is known, to depict the nature, direction or extent of a theory or variable within a population (DePoy & Gitlin, 2005). These types of questions focus on one 35
population (middle aged to elderly men who are being screened for prostate cancer), and one concept (the experience of the period between DRE, PSA and TRUS-bx results), and “describes the parts of the whole” (DePoy & Gitlin, 2005, p. 51). Level 1 questions lend themselves to descriptive research designs.
It has been established that this study is a qualitative one, as it deals with understanding human experience using interviews and narrative as the method of creating meaningful “text rich” data. Furthermore it poses a Level 1 question that describes phenomena where little was known.
3.3 Methodological Decision-Making Critical approaches of action research and feminist research were all discounted for use in this study. Although there was a strong issue of gender (as only men have prostate cancer), and it could be argued that there may have been the possibility for the need of emancipation (from the health care system), or empowerment (over their bodies), neither of them quite fit this study‟s requirements. They did not represent each person (participant) as a unique individual or “case” (Travers, 2001, p.135; Schneider et al, 2007, pp.23-24).
An Interpretive approach that describes, investigates and creates value in a social or practice environment was deemed more appropriate, and such an approach includes Phenomenology, Grounded Theory, Ethnography, Descriptive Study, Case Study or Historical methodologies (Travers, 2001; Schneider et al, 2007). The definition of
36
historical studies immediately discounted it as a methodology as this study did not aim to go back in time or unearth historical data.
Ethnography, with its distinctive base in understanding the behaviour of people within differing cultural groups, uses observation and on-site fieldwork for prolonged periods (“rite of passage” to ethnographers). Ethnography would have been very difficult given the limited time to do this study and an understanding of a culture was not the aim (Travers, 2001, p. 116; DePoy & Gitlin, 2005, p.55; Schneider et al, 2007, p.115; Wolf, 2007, p. 296).
Grounded Theory, while also using constant comparisons and social constructs, is also used to build theoretical reasoning to account for problematic behaviour. In addition, there is very extensive fieldwork with the researcher going in and out of the field to analyse and compare data (Schneider et al, 2007; Wuest, 2007; Polit & Beck, 2008). However, grounded theory was discarded because it would not have been possible to go “into the field” and would not suit the time allocation for an Honours program.
Many schools of thought and interpretations back phenomenology, all of which needed to be understood with an “in-depth” expertise of the philosophy (DePoy & Gitlin, 2005, p.56; Munhall, 2007; Schneider et al, 2007, pp.107-108). Phenomenology aims to understand the meaning of a human experience and discover the meaning of a phenomenon rather than what it is like (Munhall, 2007). Phenomenologists use „immersion‟ to be fully present with the given phenomena, and uses bracketing to examine the data without preconceptions or presumed 37
knowledge. The researcher moves backwards and forwards re-examining the phenomenon rather than using a linear path or collapsing and categorising themes, keeping each participant as the focus and not trying to find similarities or differences (Patton, 2002; Munhall, 2007).
Phenomenology would have been an excellent
methodology, particularly because of its process of uncovering and describing of a phenomenon. However, this study‟s question and aim were not congruent with those of phenomenology and the process of cross-case comparison does not fit with how phenomenology analyses issues. This method was also discounted due to the limited time allowed in this Honours program, particularly lack of time to gain the specific expertise in the philosophy underpinning this methodology. For reasons outlined above, Case Study was chosen as the appropriate methodology because it describes a lived experience and allows the researcher to establish all of the boundaries.
3.4 Case Study Case Study was chosen as the most appropriate research design because it offered the chance to glean a profound understanding of the participant‟s world, thoughts and feelings, and afforded the researcher flexibility in terms of design, data collection methods, time boundaries, and method of analysis (Yin, 2003). In this instance, the data collected from interviews of the participants was analysed to describe their experience through the screening process, which fulfilled the original aims of the study and answered the questions posed by the author.
There are different types of case study, for example single case, which can be either holistic or embedded, and is used mostly in representing critical, extreme or unique, representative, revelatory, or longitudinal cases (Yin, 2003). Multiple case studies 38
consist of two or more cases, which can also be either holistic or embedded (Yin, 2003). It is suggested by Yin (2003) that multiple cases can be seen in the same way that one would view multiple experiments, in as much as they follow “replication” logic (Yin, 2003, p. 47).
Theory development in Case Study is incorporated into the research design phase. This type of theory is more like a “blueprint” rather than the philosophical type theories used in social sciences (Yin, 2003, pp. 28-29). There are five components of research design that are used to form the “theory” behind the study. Yin (2003, pp.21-28) states that they are: (1) study question, (2) proposition, (3) units of analysis, (4) logic linking data to proposition, and (5) criteria for interpreting findings. These five steps were used as a framework in the study design.
3.5 Study Design Case Study is best used to ask and find answers to “how” and “why” questions, as this study sets out to do (Stake, 1995; Scholz & Tietje, 2002; Yin, 2003, pp.7-15; Hentz, 2007; Schneider et al, 2007). The study design explains what needs to be examined to assist in discovering the required data about the participants that Yin (2003) refers to it as the proposition. If there is no proposition a researcher may be “tempted to look at everything”, but this would make the study ridiculously large and out of control with no specific focus (Yin, 2003, pp.21-26). The more specific the proposition, the more likely it is to stay focused and feasible. The proposition is the central force in assisting the research to determine the design of the study, and which echo the question and literature review (Yin, 2003).
In this Case Study the
39
proposition was the “lived” experience for the participants during this screening period. Furthermore, Yin (2003, p. 47) advises that “every case should serve a specific purpose within the overall scope of the inquiry”. In this study, each participant was a separate “case”, or unit of analysis (Patton, 2002; Yin, 2003; Munhall, 2007). The choice of units for analysis was directly related to the research question, though Yin (2003) advises caution in believing that this unit of analysis, or any other component of the study, will be final, as data collection may require the researcher to revisit the design as the result of new discoveries.
In this Case Study the data collected logically linked to the proposition, e.g. the interviews explained the experience, for each participant (unit/case), during that period (DRE/PSA to TRUS-bx). The criteria for data analysis involved the development of an analytical, descriptive framework on which to base the Case Study, rather than a theoretical proposition or rival explanation (Yin, 2003).
While holistic studies look at a phenomenon as a whole, embedded Case Study entails analysis of more than one unit. Here, each participant was a unit of analysis. However, apart from the interview to obtain a descriptive view of each “case‟s” experience of PCa screening, there were also sub-units to further enhance the background data of each case. Subunits involve utilising a variety of data; in this study, they included data from interviews, observations, TRUS-bx worksheet, Urologists‟ referral comments, test results, pathologists‟ comments, demographics and pain scores. These other collected observations assisted in building a unique picture of each „case‟, and sub-units may be either qualitative or quantitative (DePoy
40
& Gitlin, 2005; Yin, 2003; Polit & Beck, 2008). These types of data were part of the findings for each case, thus making it an embedded multiple Case Study (Yin, 2003).
Within the definition of a unit, Yin (2003) also suggests specifying the time boundary, as in where it begins and ends. This study began when the participants (each “case”) visited their GP where a DRE and PSA were performed, and continues through to the TRUS-bx procedure. Further boundaries include the location of the study which was the Radiology Unit of a metropolitan hospital, the cohort consisted of older men who have had all the three tests involved in PCa screening with each participant being a „case‟. The data collection was achieved via a one-hour interview and both single and cross-case analysis were used.
3.6 RESEARCH METHOD In this section, the setting, participants, data collection method and data analysis will be discussed. Before commencing this study, approval was gained from the Chairman of the hospital‟s Research and Ethics Committee, the Director of Nursing and the Radiology Unit Manager (Appendix 8.3.1). Research project indemnity was approved (Appendix 8.3.2) and ethics approval was sought from the Flinders Clinical Research Ethics Committee, and approved for the period of 12th October 2009 to 12th October 2012 (Appendix 8.3.3).
3.6.1 Setting The setting for this study was within the Radiology Unit of a metropolitan public hospital, where TRUS-bx is one of the diagnostic tests performed. The men arrived
41
at this setting after their GPs had performed a DRE and ordered a blood test revealing an elevated PSA level. Consequently, most of the participants were referred to a Urologist, who sent them to the Radiology Department for a TRUS-bx.
3.6.2 Participants The participant group for this study consisted of middle aged to elderly men, from 61 to 81 years of age, who had a TRUS-bx at the Radiology Unit. A participant information sheet and letters of introduction and invitation to take part in this study (Appendices 8.3.4, 8.3.5, & 8.3.6), were sent to all men who made an appointment for a TRUS-bx. These letters were posted to the potential participants with the usual procedural information sent to patients by the department, at the time their TRUS-bx appointments were made. The men who were interested in participating in this study advised the reception staff of their interest when they arrived for their TRUS-bx. The receptionist then contacted the researcher with the name and telephone number of the participant. The researcher telephoned the participant, identified if they met the inclusion criteria and arranged an appropriate time for the interview.
The study‟s intent was to select six to ten men who would become part of a purposive sample to take part in this study. The first ten men met the inclusion criteria so they were recruited into the study. The inclusion criteria included men referred to the Radiology Unit for a TRUS-bx, aged from 50 to 85 years, who live in close proximity to the Radiology Unit (quite a few patients referred to this unit live in remote, coastal or rural areas). The participants needed to be able to both read, and write English, as they were expected to read and sign a consent form, and have a clear understanding of what the study entailed. 42
The exclusion criteria involved men over 85 who were not expected to be participating in this type of screening. Hearing was an important issue to consider so that questions and answers could be clear and succinct. Another age related problem to be aware of was dementia. A patient with any form of cognitive impairment would not be able to give informed consent to be part of the study (Schneider et al, 2007, p.84).
After consideration and due to the fact that a number of men from remote and rural areas had responded to the participant invitation, the inclusion criteria was adapted to include them. This change to the inclusion criteria gave the study a unique quality in its involvement of both urban and rural men, and these changes are within the scope of Case Study as the researcher sets the boundaries, which can be changed (Yin, 2003). The researcher travelled to rural areas on three occasions. While it was originally thought that the time and expense of travelling long distances to conduct interviews was beyond the means of this study, by doing so considerable value and insight was added to this study by the involvement of rural men.
3.6.3 Data Collection As stated previously once participants were selected a meeting time and place was negotiated. Due to the remoteness of some participants, and co-morbidities, the participants were given the choice of conducting their interview in the Radiology Unit, at their home, or another mutually agreed upon location. There were ten men who took part in the interviews in this study, four of the men were interviewed in their homes and six were interviewed in a quiet, private location within the Radiology Unit. When interviews were conducted at the participant‟s home, the 43
researcher had a male escort who remained in the car for the duration of the interview as per the recommendations of the Flinders Clinical Research Ethics Committee.
The interview commenced after the researcher had followed up the written information previously provided with a verbal explanation and clarification of the details of the research process with the participant, and once they had read and signed the consent form (Appendix 8.3.7). Following the interview, participants were given information on PCa support groups (PCSG) in their local area, internet web sites and telephone help lines. This plan was to assist participants who may have needed to discuss their feelings with someone neutral or find out more information once their TRUS-bx results were known.
This study used a semi-structured, open-ended interview question guide (Appendix 8.3.8), with base questions asked of each participant to maintain the establishment of the same “type” of experiences (Stake, 1995, p. 65; Yin, 2003). For example, there was no point asking one participant about their experience of the DRE, and not asking the others. Participants may have experienced the DRE in diverse ways; each would have a distinct emphasis on their view, eventually converging to form the multiple “case” views (Stake, 1995).
During the interview, the researcher asked questions in a chronological manner, from one end of the screening process to the other. Questions gave direction, urged further probing of an issue, and encouraged participants to complete the details of their „story‟, in their own words (Polit & Beck, 2008). While the semi-structured interview 44
was in progress, the researcher also kept notes on non-verbal cues and reactions of the participants to enhance the meaning behind the transcript (Stake, 1995).
All interviews were audio tape-recorded for accuracy of participants‟ responses and then the researcher transcribed the tapes immediately. The interviews were transcribed verbatim from the audio tapes and were combined with observations during the interviews and other background and TRUS-bx procedural documentation to glean an insight into each case. Once transcribed, a copy of each transcript and a self addressed, stamped envelope was posted out to each participant to “proof read” and to make any adjustments for inaccuracies, known as member checks (DePoy & Gitlin, 2005, p. 276).
None of the participants disagreed with their transcripts and nine of the ten transcripts were posted back to the researcher. At the time of the interviews, it was stressed in writing and verbally that participants could withdraw from the study at any time and participants were given a contact number if they wished to do so. When the participants were told about the transcript being sent to them they were asked to read it, comment if they wished, and post it back in the included stamped self addressed envelope, however that was not compulsory. Therefore the tenth transcript was used in this study since no advice was forthcoming from the participant as to his wish to withdraw and not returning the transcript did not signify withdrawal. These interviews enabled a rich description of each man‟s experience of PCa screening.
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3.6.4 Data Analysis Patton (2002, p. 447) states that Case Study is actually an “analysis process and it is the end result of gathering in-depth information in an all-inclusive, methodical manner. The data collected from each “case” interview was systematically analysed and collated into a readable story that reflected the effect of screening on these men (Patton, 2002).
In qualitative studies, data is often reduced from vast amounts of dialogue, down to central themes, by utilising thematic analysis that describes a phenomenon (Patton, 2002). This process involves “identifying, coding, categorizing, classifying and labeling the principle themes” (Patton, 2002). Burnard‟s (1991) 14-stage analysis is an excellent example of this plan and is perfect for the type of interviews used. Merriam (1998) warns that Case Study requires very rigorous data management due to the vast amount of information that is collected. This huge amount of data is also compounded by the two-stage analysis of single case and cross-case analysis typical of multiple Case Study (Merriam, 1998). The aim is to identify „process and outcomes within, and across the cases, pulling out patterns and themes (Merriam, 1998, pp 194-5). Patton (2002, p. 454) has suggested that emic analysis be used, to understand what “indigenous” categories participants have created. In this way, inductive analysis builds a record of terms and phrases that were used by participants to describe their experience of the screening process. Other background and procedural data already outlined in the study design (section 3.5) also helped to build a picture of each case and to verify or challenge concepts that emerged.
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The thematic analysis was achieved by using an abridged version of Burnard‟s (1991) 14-stage thematic data analysis (Appendix 8.3.9). This method of thematic data analysis was utilised on each transcript by working through each stage of the analysis. In order to clearly visualise each theme, a different colour was used to highlight the different themes throughout the transcripts. Using the computer and „cut‟ and „paste‟ highlighted sections were grouped together to confirm congruence within the formed themes and check for sub-themes.
As themes were gathered and collapsed, they was reduced from nine themes to three after the first case analysis with subsequent single case analyses ranging from up to 13 to three themes (see Appendix 8.3.10). When all ten transcripts had been analysed in this way a cross-case analysis was performed and it proved that the individual case analyses had been appropriate. This is because the same three themes maintained their relevance throughout a re-read of all ten transcripts against the list of themes and sub-themes. While all ten men discussed issues related to each of the three themes, they did not all mention the every subjects involved in each sub-theme.
3.7 RESEARCH ‘TRUSTWORTHINESS’ Many researchers have written on the topic of rigour and transferring criteria from one paradigm to another. It appears to be accepted in qualitative research that “goodness” should be evident in all aspects of qualitative research (Emden & Sandalowski, 1999, p. 5; Tobin & Begley, 2003, p. 391). Goodness is explained as being concerned with the „beliefs, assumptions, motivations, and ways of working‟ that are central to the researcher, but equally about opinions on research „procedure
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and findings‟, and continues throughout the entire study (Tobin & Begley, 2003, p. 391).
The researcher used „reflexivity‟ by means of a personal journal to record thoughts, decisions and feelings as the study progressed. Also using „ongoing self critique and self appraisal‟, that gives clear „sign posts‟ to the reader (Stake, 1995; Koch & Harrington, 1997, pp.882-889; Oman et al, 2003; Tobin & Begley, 2003, p. 392; DePoy & Gitlin, 2005; Rolfe, 2006, p. 309; Sandalowski & Barroso, 2007, p. 228). The current study was based on the concept of „trustworthiness‟ and incorporated the criteria of credibility, dependability, transferability and confirmability (Koch & Harrington, 1997, p. 885; Tobin & Begley, 2003, pp. 391-392; Rolfe, 2006, p. 305). These criteria were demonstrated in this study by the use of detailed, vivid descriptions, decision-making audit trails, and research journal to establish authenticity of the study. Further explanation of these criteria and how they were achieved are tabled in Appendix 8.3.11.
3.8 ETHICAL CONSIDERATIONS Scientific merit, as Parse (2001) explains, is the rationality of the processes involved in research. That is, the use of logic throughout the process, from designing the framework of the research to discussing the findings. Parse (2001, p.19) also explains protection of participants, achieved by safeguarding “confidentiality, anonymity, safety, and the right to withdraw” at any time throughout the research without any reprisal. The onus on the researcher is one of “beneficence” to do no harm and maximise benefits (Schneider et al, 2007, p. 88; Polit & Beck, 2008, p.170; Kvale &
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Brinkmann, 2009, p. 73). The ethical issues of informed consent, confidentiality, risk of harm, as well as conflict and political considerations are addressed in the next section.
3.8.1 Informed Consent Participants needed full disclosure in order to provide informed consent prior to their interview (Polit & Beck 2008; Kvale & Brinkmann, 2009). Informed consent required that participants were given adequate information about the study, that they clearly understood it and could therefore give their consent to participate (Garrett et al, 1993; Patton, 2002; Munhall, 2007; Polit & Beck 2008; Kvale & Brinkmann, 2009). Participants were given written and verbal explanations of all that was entailed in the research, and a copy of their signed consent form. This information variously included: what information was being collected, why, how, where, what it would be used for, and how the participant would remain anonymous. It was explained to each participant that they would be given a pseudonym a name that was very dissimilar to their real name. Information on how participants privacy would be upheld, locked secured storage of all the study information, any risks involved, an explanation of voluntary participation, consent, and the right to withdraw, and contact information should they need to contact the researcher with questions, were required and given (Polit & Beck 2008; Kvale & Brinkmann, 2009). Consent was sought to audio tape the interviews for reasons of accuracy in reporting each “case”.
3.8.2 Confidentiality Each participant‟s privacy and confidentiality was upheld at all times (Oman et al, 2003; Schneider et al, 2007; Polit & Beck, 2008). All participant information was 49
completely de-identified and participants were given a pseudonym. Confidentiality and privacy were particularly important with personal interviews, as a participant‟s own words and basic profile may be utilised in a published work or public report which each participant was made aware of (Oman et al, 2003; Kvale & Brinkmann, 2009).
3.8.3 Risk of Harm This study was considered to be only of minimal risk, however, it may have been possible that talking about this personal information would make the participant feel vulnerable or upset (Munhall, 2007). The researcher arranged for a councillor to be accessible after each interview, should the participant need that service. All participants were given written information on local Prostate Cancer Support Groups for further resources (Patton, 2002; Kvale & Brinkmann, 2009). As stated earlier, all participants were informed that they had the right to withdraw at any stage of the research. No participants withdrew from the study.
3.8.4 Conflict & Political Considerations There may have been a conflict of interest within this study, as the author/researcher, had worked in the Radiology Unit where the participants had their TRUS-bx (Garrett et al, 1993). The researcher did not have contact with the participants until they accepted the invitation to participate in this study. Once the participants had responded to the invitation to take part, their details were given to the researcher by the reception staff in the Radiology Unit. Once the researcher was aware of a participant‟s willingness to participate, the researcher contacted that person by telephone. All interviews were held at a time and place designated by the 50
participants. In some cases they accepted the invitation to participate and agreed to have their interview directly after their TRUS-bx.
3.9 SUMMARY This chapter highlights the choice of paradigm and methodology for this study and has argued why a multiple embedded Case Study was most appropriate for obtaining participants‟ descriptions of their PCa screening experience. It has also explained the study design, research method, research „trustworthiness‟ and ethical considerations. The following chapter will present the findings of the study.
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CHAPTER 4: FINDINGS 4.1 INTRODUCTION This multiple case study offers a profound understanding into each man‟s experience of what it was like to be a man going through the PCa screening trajectory. This chapter describes the collective findings of the open-ended semi-structured interviews of ten men who had recently undergone PCa (prostate cancer) screening. Firstly, this chapter will present a description of the participants and will reveal the significance and interrelatedness of the three themes that are the findings of this study. Embedded sub-units are used to further develop each „case‟ and they include the collection of demographic and TRUS-bx procedural information and pain scores. Tables are used to illustrate the main points and findings found.
4.1.1 Participants Portrayal Adam, Craig, Greg and James all lived in the metropolitan area while Brian, Ely, Derek, Harry and Ian were from rural communities, and Frank flew in from a more remote area for his test. The participants were between 61 and 81 years of age. All of the men were married with one man separated from his wife although their relationship remained supportive. Only one man did not have children, the other nine men had between two and four children. Half of the participants were Australian with the others being Australian/British, Australian/Irish and Australian/Dutch. All spoke English with one man also speaking Dutch. Table 4.1 below clarifies the personal details of each participant and it is included as an embedded subunit to enhance the uniqueness of each case (Yin, 2003). Further data concerning PCa screening and TRUS-bx outcomes are available in Appendix 8.4.1. 52
Participant
Pseud -onym
Age
No. of Bx’s
No. of DRE’s
No. of yrs. Screening
Lives With
Children
Nationality
Language
P1 P2 P3 P4 P5 P6
Adam Brian Craig Derek Ely Frank
73 75 72 65 70 61
4-5 1st 1st 1st 1st 1st
?4 2 2 2 ?(1) 1
10 4-5 ? current current ? current
Wife Wife Wife Wife Wife Wife
1xD+1xS 1xD+1xS 1xD+1xS 1xD+1xS 2xD+2xS 3xS
British Australian Australian Australian Aus/British Aus/Dutch
P7 P8 P9 P10
Greg Harry Ian James
69 65 70 81
1st 1st 1st 1st
2 1 ? ? 20
4 current ? ? 20
Wife Wife Wife
1xD+1xS 3xS+1xSd 2xD+2xS
British Irish Australian Australian
English English English English English English + Dutch English English English English
Table 4.1 Personal Demographics and Screening History of all 10 Participants
4.1.1.1 Adam Adam commenced screening 10 years ago and hoped his results would continue to be negative. He was concerned about continuing his usual daily routines including his run, and working in his shed. It was important to Adam that he felt respected by others. Adam believed that discussions on PCa were not for open discussion and especially not in front of women. He complained that after years of him enduring these tests his wife still says „prostRate‟.
4.1.1.2 Brian Brian was the only man who knew his results at the time of the interview and that fact had allowed him time to reflect on his mortality and start to think of others, particularly his family. He was shocked and surprised at the number of men he knew who had PCa or had been tested, but had never discussed this information with others. He wanted to spread the word so others were not as ignorant as he was in respect to PCa and screening. 53
4.1.1.3 Craig Craig felt sure that he had PCa and this conviction was followed by morbid thoughts; also thinking he probably deserved it. He seemed to have a fractured family life with his children and grandchildren though a loving supportive relationship with his wife. They had few friends and interests and lived in a self-sufficient retirement village.
4.1.1.4 Derek Derek mentioned looking on the internet, though he remained ignorant of where the prostate was in the body or how to get to it. Derek‟s ignorance, which is discussed in more detail in 4.4.1, led him to think weird things concerning the TRUS-bx including the view that there would be an expansion of his anus to get the equipment in there. He was extremely concerned about loss of erectile function and lovemaking. Derek had just retired and was planning to travel around Australia with his wife. PCa screening had halted those plans.
4.1.1.5 Ely Ely was positive he did not have PCa and had many theories to back it up even when those theories were exposed as being technically incorrect or impossible. Further discussion of Ely‟s denial in 4.2.6 examined why talking about his lifestyle and personal wealth were the central focus of his interview, and how it made it difficult to ascertain other details.
4.1.1.6 Frank Frank thought the biopsy was terrible; the lack of privacy was the worst part, being almost naked with all those people in the room. Frank had a complete change of 54
heart once it was explained to him during the interview, that everyone in the procedure room had a specific role. When he understood, he became more accepting of the whole procedure. However, he stated he would not divulge everything about the TRUS-bx to another man in case he put the other man off going for PCa screening.
4.1.1.7 Greg Greg had a twin brother who died of PCa and his brother‟s death affected him to the point that when asked a question he would answer from the point of view of his twin brother. When asked about a particular test he would talk about what happened at his brother‟s test rather than his own. He had trouble with fine details and remembering timelines, and his ex-wife interjected to help him with the information. He seemed to find comfort and confidence from her being there to assist him.
4.1.1.8 Harry Harry gave an honest account of his thoughts and feelings concerning anal penetration, jokes, homosexuality, sexuality, the code of silence, and the feelings that men do have but will not say. He stated he had depression and appeared nervous, shy and unsure. However, he was very open and provided vivid descriptions with the use of humour.
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4.1.1.9 Ian Ian relayed a number of stories that were not relevant to the questioning or the subject. On the subject of men talking about PCa he constantly referred back to people not divulging how much money they have or owed on their mortgage or to the bank. He also referred to his work situation often, information that was not relevant. He also believed that he had an anaesthetic which was not the case. He repeatedly stated he did not think the biopsy was bad and that he had worse, giving the impression of toughness.
4.1.1.10 James James was the oldest, he was a very independent and active man who did not want to be a burden or a nuisance to anyone to the point of considering euthanasia. He lived a life of acceptance including his possible PCa. He commenced the interview by stating that he did not talk about feelings or emotions, however, to his surprise, as the interview unfolded, he did. James started PCa screening 20 years ago, it had been triggered by an advertisement. He had a close family relationship though few friends as he and his wife like to remain very private.
4.1.2 Participants’ TRUS-bx procedures The beginning of the PCa screening trajectory occurred for various reasons and not necessarily related to why they visited their GP. Three men began their journey from regular visits to their GP for diabetes testing. Others were six weekly vitamin B12 injections, a post-pneumonia check-up; annual check-ups, a twin brother‟s death from PCa, recurrent bladder infections and a knee problem. Each participant commenced screening guided by their GP; seven men were subsequently referred to 56
a Urologist who requested a TRUS-bx. Three men from rural areas were referred by a specialist GP for their TRUS-bx.
For Adam PCa screening involving all three tests had been a part of his life for 10 years, while James had been screening with PSA and DRE for 20 years though this TRUS-bx was his first. For the remaining eight men a TRUS-bx was a new experience though they had all been screened with PSA and DRE prior to this TRUS-bx. Similarly, Brian and Greg had both been screening with DRE and PSA for 4-5 years but this was their first TRUS-bx. While Adam and James knew that they had a PSA test every year, it was difficult to ascertain exactly how many times the other men had been tested for PSA. Three men did not know they had been tested until their results were elevated; nor did they know how many times they had been tested prior, when the results were not elevated. It is well documented that the PSA test is viewed as just another blood test and that we as a society have become blasé about them (Carter, 2003; Laws, 20004; Chapple et al, 2008; Oliffe & Thorne, 2007; Oliffe, 2006).
Table 8.4.1 in the appendices illustrates individual participants‟ demographics for their TRUS-bx including PSA, anaesthetic, staff involved and TRUS-bx results relating to this current screening. This particular table also highlights the two distinctive differences between the three Radiologists who performed the TRUS-bxs. These differences were that one Radiologist used two Xylocaine injections for anaesthesia and that another took 12 core biopsies. Conversely, the Radiologist who performed eight of the TRUS-bxs, used Lignocaine Gel for anaesthesia on the ultrasound probe and six core biopsies, though one man had eight biopsies due to 57
sample problems. At the time of the interviews, only Brian knew his results were positive.
4.1.3 Themes The following is a discussion of the three themes and sub-themes to emerge from the individual and cross-case thematic analysis described in Chapter Three.
Figure 4.1 Themes emerging from the findings of the PCa screening trajectory.
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The model above (Figure 4.1) represents the PCa screening trajectory including three tests - PSA, DRE and TRUS-bx. When the participants described their experiences of these tests, the thematic analysis revealed three themes. These themes to emerge from the analysis have been depicted in a diagrammatical model consisting of overlapping circles (Figure 4.1 above) in order to explain their interrelatedness to each other, and how each theme has a connection to and commonality with the other themes.
Theme 1 is concerned with Masculine Behaviour in terms of what men do and how men act, with sub-themes of anal penetration, jokes, sexuality, code of silence, denial, and acceptance. Theme 2 is connected with Fear, Shock & Emotion and how men felt about the sub-themes of pain, privacy, aging and death and time and nuisance. Theme 3 involves the Communication of Information in relation to the subthemes of awareness (confusion, consent, and false information), appreciating honesty and what I would tell another man. These themes interrelate and overlap in areas making them difficult to disengage. While the theme of “Masculinity” is a compelling influence running through the fabric of each theme, “Fear, Shock and Emotions” undeniably affected the way in which masculine behaviour transpired, reflecting to a degree how men also comprehend the “Communication of Information”.
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4.2 THEME 1 - MASCULINE BEHAVIOUR Theme one and its sub-themes exposed specific masculine
traits
that
led
to
deeper
understanding of how the participants dealt with the possibility of PCa, including the belief that PCa was a male only domain, and not a subject that was open for discussion. The issues surrounding PCa were deemed „men only‟ areas and had some believing that women would not understand as stated by Adam, “...she‟s beginning to understand now that it‟s a man thing...” (L251-3). Adam‟s comments often revealed that he believed his wife showed a lack of respect in connection with his screening regime and recurrent invasion of his body. As Brian did not know what his father had died of, he decided to record what was happening to him for his son, “...I started writing these notes and I‟ve addressed them to (name-son), (name-daughter) needn‟t know because they‟re mainly...men‟s things” (L478-9).
Part of the participants‟ masculine behaviour included how they believed they had been brave in undergoing these intrusive tests. Some of the men made specific comments that attested to how brave they believed they had been. Adam mentioned a number of times that he thought he was “brave” with comments like “I‟m probably being brave here I‟m not really... what can you do about it ...” (L578). Ian said that prior to his TRUS-bx he had been warned “...it‟s not gunna be that good...” (L2813), yet on many occasions he said he had suffered “worse” things (L286, 333, 334,
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355, 443, 702), making it sound like he was extremely brave and macho. Ian believed he received an anaesthetic to “deaden it” (L352), and the anaesthetic would take some time to wear off stating: ...I thought well if that was the worst I wouldn‟t mind it... (L285-6) ...I‟ve had worse...a lot worse... (L333-4) I‟m not saying it might be ...different tonight...when their...drugs wear...off...as far as I‟m concerned its good as gold...if that was the worst I ever got I‟d be doing alright (L351-356) R-How did you find the noise? (Of the biopsy gun) (L388) P-I dunno I suppose you heard one gun you‟ve heard „em all... (L389)
Ian described the DRE similarly and when asked if it bothered him Ian replied, “No but there again you hear others that, oh I wouldn‟t do that...” (L747). Ian‟s blasé response to the experience of the TRUS-bx and DRE made him sound quite brave, and tough with the repeated comments about having had „worse‟ and here he was having a test that others stated they „wouldn‟t do‟. Ian, like others, expressed bravado while some preferred to express denial and avoid facing the issues.
4.2.1 Anal Penetration PCa screening typically commenced with a PSA blood test and DRE, involving TRUS-bx when abnormal tests resulted. The PSA was deemed insignificant by the participants, while anal penetration performed through both the DRE and the TRUSBx was determined as invasive. Not surprisingly, the response to the announcement of tests that involved anal penetration was confronting and greeted with shock and surprise. Here we see the overlap of themes when fear, shock, surprise, vulnerability and sexual innuendo and insecurity meet with the dominance of masculinity and lack of knowledge that these kinds of tests existed: 61
A bit scary...nothing like this has ever happened to me before I was a bit unhappy a bit uneasy... (P3 L47-9). ...no I wasn‟t aware from the beginning...I went into shock when he said he...wanted to go in the rear end... Craig (L591-3). ...a bit shocked and panicked went home and looked up on the internet...no, no I‟m not going to go through this it‟s too frightening a prospect to have that sort of invasion... Derek (L140-3). ...then they were going to do this test I thought Aye... (L695) ...I‟ve never heard of people sticking fingers up bums what for... Adam (L710)
The experience of anal penetration was expressed as intrusive, uncomfortable, invasive and disconcerting. Ian, James and Ely felt the anal penetration was „uncomfortable‟ but Ian had „put up with a lot worse‟ (L702), James lightened the situation with humour when he said that he „had better things happen‟ (L64) and voiced acceptance concerning most things “...what will be, will be, what has to be done has to be done...” (L391-2) and Ely said “if something‟s gotta be done, do it, get it over with, grit your teeth” (L428-9). On the other hand, Greg had found the DRE more uncomfortable than the TRUS-bx and stated that “it was more painful during the inspection with the... Urologist doing it with his fingers than it was there...” (L335-337). Harry also linked the experience to sense of defencelessness:
...your just lying there a little bit helpless a little bit vulnerable... (L693-4) ...I think... most men...don‟t want to be conscious of the fact that somebody‟s fiddling around down that end.... (L701-3).
The susceptible passive nature of anal penetration was an affront to their masculinity and linked to connotations of homosexuality due to them having received rectal penetration that for them depicted homoerotic practices: ...it‟s mixed up with cow‟s hoofs (rhyming slang) and that sort of thing... ...I‟ve said to a couple of doctors that I wouldn‟t make a good poofter we‟ll put it that way....
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Ian (L737-8, 40-1). I did remark to the doctor that thank God I‟m not homosexual. James (L202-3).
While Brian questioned the methods used “in this day and age” (L401), most men, like Adam, went on to justify or rationalise the use of anal penetration: I don‟t like the finger up the bum but that‟s the easiest way of checking... (L486-7) ...there are reasons for it otherwise...I wouldn‟t allow them to do it.... (L712).
Harry summed up the sentiment of the group with his comment: P-...It‟s just an area that you just don‟t you just don‟t, do ya.... (L709) R- No go zone... P-No go zone yeh I suppose that‟s the best way to describe it. (L711)
4.2.2 Jokes Men alluded to the way they found it more comfortable or less mortifying to joke about this sensitive subject rather than be too serious, finding jokes easier to take than emotions: Anybody you tell they laugh and smile and they know you have to have it but it‟s all a laugh to blokes... Greg (L635-6). ...they...make some sort of wise crack about that...it‟s made fun of ...with the blokes, they make a joke about it and ...lighten the situation rather than focus too deeply on it...it does make it easier to take...it‟s usually something to do with homosexuals or ...some sort of crack...they‟ll say make sure he takes his ring off...stupid things like that...the sort of thing that people were saying to me and I thought, Geez here I am bloody sixty-odd year old bloke and carrying on like that... Harry (L266-294).
Ian also said, “...it‟s a bit of a joke for lads and jokers...that are talking...” (L733-4). Harry felt that “...blokes carry on (joke) when things are probably...not quite what they should be...so as they can get through it a little bit easier” (L610-3). However, 63
as discussed later under „Code of Silence‟ (4.2.4) the jokes only go so far, when it came to the TRUS-bx the jokes stopped. While these comments contain humorous sexual connotations for some men, concerns about their sexual performance, was paramount.
4.2.3 Sexuality Sexual activity in their relationships with their wives had already ceased for some men, but for others the thought of losing that intimacy was daunting. Craig said he was not sexually active but they got on all right, Frank was not interested due to antidepressant medication and for Ian sex had finished a decade ago. Derek and Harry had quite strong feelings about sustaining their sexuality. Derek‟s mind had raced ahead to a confirmed diagnosis of PCa and treatment. The issue of fear arose in respect to the loss of sexual performance and manhood, evidence of where the theme of Masculinity overlaps Fear, Shock & Emotion:
...the fact that I might have my prostate removed was a bit daunting...that means what? Means I can‟t have an erection any more that that‟s the end of, end of our love making to that extent and that was all very frightening... Derek (L244-249).
Harry had also thought ahead and admitted, “I‟m not like I was when I was young bloke...I‟m still active...I suppose it‟ll affect that I hope it don‟t but definitely might...” (L720-3). Moving further into the topic of loss of sexual ability, Harry spoke about how that might feel, making links between the loss of manhood and the „code of silence‟ he suggested it would:
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take your manhood away and what have you got...I suppose that‟s a big thing I think that‟s why blokes don‟t talk about it...I think that‟s the way most blokes look at it if they being honest if you can‟t perform... (L748-755).
Harry believed that “it‟s the last thing to go with blokes especially when you‟ve got the aid of Viagra...” (L775-7). He thought it would be a particularly “...terrible scenario for a young man, say of 40 or 50...” (L787) but around 60s and 70s, Harry thought it would be easier, however “...it‟s still hard it‟s still a hard thing to accept” (L790). The complexities and fear involved with the possible loss of sexuality, manhood and masculinity were embedded in some of the reasoning behind why men do not talk about these issues. Indeed a couple of men did not talk about their sex lives at all.
4.2.4 Code of Silence All of the men in this study made comments in relation to the „code of silence‟, these responses involved men not sharing information with other men, manipulating it, or excluding specifics. It was the consensus that PCa screening is a „private‟ thing and as Adam said several times: It‟s not a talking point around a barbeque (L 212, 249, 595) ...maybe where women are around it would be restricted for reasons that they probably wouldn‟t have a clue... (L249-250).
On the other hand, James suggested that the reason why men do not share information was simply that “they‟re not women” (L213). Brian could not believe the number of men he knew including family and neighbours, who had had PCa screening, PCa or an enlarged prostate and had never mentioned it to him: “...they
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never said anything about it...” (L61). Brian only found out information about others because he mentioned he was having PCa screening to them. A possible explanation for this cames from Broom‟s (2004) study that revealed some men minimise the number of people who know in an attempt to keep their life more „normal‟.
While some men comment about the DRE, the TRUS-bx is different and according to these participants, “...the story stops when it comes to this sort of thing....” (P8 L277), “...end of conversation...” (P5 L539), “...I‟m going for a biopsy that‟s it end of story” (P7 L605). Moreover, men do not talk about the actual biopsy and when asked about why men do not talk about PCa screening or pass on information to each other, Harry and Frank agreed saying: ...men don‟t talk too much about things like that, they just don‟t its taboo we don‟t want to know...when it comes to that area... Harry (L117-133). Well I don‟t want to know what he‟s got and he don‟t want to know what I‟ve got...I‟m not interested and I think we‟re all the same. Frank (L276-280).
Greg, Ian and Derek offered further insight into what Harry and Frank stated: ...probably not a macho thing (L607) ...it‟s that image you can‟t say there‟s anything wrong...there‟s that macho thing men don‟t catch colds... Greg (L626-678). ...it shows that they‟re not wimps or Mummy‟s boy or anything like that you gotta be tough... Ian (L508-9). ...most blokes think they‟re fit enough and healthy enough to get through life without any invasion...if someone had said to me earlier that you should go and have a prostate check up ...I might have had one years ago and I wished I had the information years ago... Derek (L674-680).
Harry suggested that this type of macho behaviour could also be related to how people are brought up, believing that men from his era would have more difficulty 66
than young people today, talking about these things. In addition, he felt that “...they don‟t want to worry you unduly....” (P8 L481). Participants probably would not start a conversation about PCa screening but they all said if asked they would talk about it. Nevertheless, what they would divulge defied being all-inclusive. Two men were more specific about exactly what they would say: ...out of sympathy I probably wouldn‟t...I‟d just leave it up to the doctors to tell them how uncomfortable it is... Derek (L625-7). ...if he‟s a nervous type then I‟m not sure I‟d explain it totally...the pain bit...I‟d let him work that one out....someone...maybe not so strong,...might just leave that click, that five percent out..... Adam (L627-638).
The comments relating to men being „macho‟, „healthy‟, „able to endure all‟, „strong‟, a „provider‟ and not a „Mummy‟s boy‟, and of the reference to the topic of the prostate as „taboo‟ were all found to be similar to the findings in Broom (2004). As Harry said, “...it‟s probably going on all around us but nobody talks about it...” (L446-7), facilitating the “code of silence” a seemingly typical masculine behaviour.
4.2.5 Denial When faced with an uncomfortable or unacceptable situation, denial is often used as a form of protection. Refusal to accept the situation avoids dealing with the anxiety and emotion that accompanies problems (Gray et al, 2000; Vos, 2006; Bailey et al, 2007; Livneh, 2009), which is known as „ineffective denial‟ in nursing diagnosis terms (Mosby‟s, 1994). Denial of the possibility of positive results was expressed in diverse ways. Extracts from both Greg and Ely‟s interviews give an example of denial although they differ markedly from each other. In the following extract, even
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when Ely was faced with overwhelming evidence, his sense of denial would not allow him to accept information, and he still rejected the situation.
4.2.5.1 Greg Expressions of denial, conflict, emotion and confusion were evident in Greg‟s story. Greg went overseas to spend time with his twin brother who died of PCa. While Greg said that it was important he be there for his brother he sounded angry with his brother for not doing anything about his illness earlier regarding screening, but admitted “if he hadn‟t have had it, I wouldn‟t have gone” (L45). When asked if he knew anything about PCa Greg said, “no, not a thing. We all think were invincible. I‟ve heard about it but that‟s all” (L47-8). Later he reflected on his brother‟s situation and said, “If I had to go like he did with the bone cancer and extreme pain you think well, perhaps I should do something about it, but I‟ll cross that one when I get to it if I get to it” (L723-726). Finally, Greg stated that “as for typical male I‟m convinced today that everyone (believe this should have been „everything‟) will be the same, it‟ll go away” (L1129-1130).
Greg showed immense conflict as he stated he knew nothing about PCa, yet had heard about it, wouldn‟t want to die in pain like his brother, however was considering dealing with it later. Finally, he believed that he will be spared, which is the attitude his twin had taken. Greg was so affected by his brother‟s death that when asked a question he would answer from the point of view of his brother‟s illness and not his own situation. Questions were re-asked or he was asked “what about you” in order to obtain his view about his screening. An alternative explanation could be that Greg was so worried about the outcome of his test that he simply could not cope with 68
talking about PCa in regard to himself, only his brother. Although if this were the case why did Greg volunteer to be part of this study?
4.2.5.2 Ely The focus of Ely‟s interview was concerned with all the reasons why he did not have PCa. Ely had volunteered to be in the study yet appeared uninterested in talking about PCa screening. Instead, he focused on how well he had done in life in terms of flashy car, home, investments, money in the bank and travel including overseas holidays, his physical activities and prowess.
Ely had many reasons why he knew he did not have PCa. Firstly, someone at his GP‟s surgery said, “...if there‟d been something wrong we would have been through to you by now...:” (L316-7) and “...if there was anything wrong we would have contacted you before if it was cancerous...” (L33-4). Secondly, Ely felt fine so he could not possibly have PCa: ...I wouldn‟t have known any difference...I‟ve had no pain...life‟s been normal... (L48-9) ...no pain no symptoms... (L365), ...no problems having a leak I can do what I‟ve always done... (L439-440), ...no pain...nothing wrong with the waterworks...I don‟t feel any different... (L567-9), ...if I was in agony I wouldn‟t be driving I‟d have been at home... (L710-1).
Thirdly, Ely‟s GP had said “...there‟s guaranteed no need ...to worry ...there‟s nothing else there...if there was I could tell it....” (L130-1). Fourthly, Ely‟s PSA had dropped from 7.5 ng/ml to 6.3 ng/ml so his GP had suggested it was “...just a flare up at that time...” (L133-4). Ely was “...quite convinced if I was to have another blood test now I reckon I‟d be back down to where I started...” (362-3). Furthermore, 69
after his TRUS-bx Ely was warned about the possible side effects (as are all patients) when these didn‟t occur he took it as a sign that nothing was wrong: “...this biopsy was suppose to have all these side effects....nasties...that never happened...”(L742-3).
Ely also based some of his beliefs on information from his wife whose first husband had died of PCa. Her husband drank a lot of alcohol, which they believed raised his PSA level. Even after Ely‟s GP told him that alcohol made no difference to PSA he still believed that it did because he gave up alcohol for two nights and that was when his PSA dropped: “...now you can make that of what you will...” (L592-3).
Informing Ely that no one could have rung him about his results because they were not ready yet did not deter him. His response was to tell the story of how they had received his first wife‟s blood test results by telephone the next day. After explaining the difference between methods of analysis on blood and tissue samples, Ely still denied any problems. Ely summed up his situation with “...I‟m alright ...Jack”, (L573).
On reflection, Ely had travelled for over two hours, back and forth and had a onehour interview, for a specific reason. It had occurred to the researcher that the invasion of Ely‟s sense of masculinity, evidenced by his obvious success in life, had scared him and he was now in fear of further disruption to his own particular dominant masculine performance. Ely needed to talk to someone who understood what had happened to him and who had the relevant information to allay his fears. Ely was most likely there with the expectation of receiving some form of confirmation or support for his many reasons why he would not have PCa. 70
4.2.5.3 Adam, James, Craig, Derek, Ian, Harry Others displayed denial in less evident ways, wishing it not to be there. Adam had been screening for 10 years and had four biopsies during that time, so waiting for the results was a familiar situation. He was relying on a negative result “...because all the others have been negative...I tend to want to read into that...” (L463-4). James had also been screening for many years with PSA and DRE and said “...I‟ve never been into problems with health I just...override them and carry on with working” (L43-4) also saying that while he had “heard plenty” (L153) “I try to block it out...they tend to exaggerate, I‟m not into that” (L154-6), thus denying information and the possible reality of his situation. PCa was also something that happened to someone else according to Craig, “...it could happen to someone else but never to me...” (L181-2).
Derek and Ian felt similarly:
...I never expected that I was a likely candidate for prostate problems...my waterworks are fine my ejaculations fine I don‟t have any pain....so I didn‟t think I‟d needed to get it checked...(L26-31). ....reaction took a while to sink in I didn‟t believe it I thought Oh he‟s got his readings wrong....I suggested having another blood test a bit further down the line ....to be sure... Derek (L132-5). You don‟t sort of think too much about it until you do have it... (L123-4) ...it didn‟t apply to me so you don‟t worry about it till it happens do you... (L146-7) ...until it concerns you well you don‟t take too much notice... Ian (L462-3).
These findings confirmed those of Oliffe‟s (2004a) study where questions over test inaccuracy occurred in hope of a reprieve. Denial also took the form dealing with things later, waiting to „cross that bridge‟. As Harry said “...cross the other thing when we come across it if there‟s anything wrong....” (L170-1) and “...we‟ll worry 71
about that when we get there...” (L435). As for the results of the TRUS-bx Harry and Ian took the view that: ...as far as I know until I find out, there‟s nothing wrong, it‟s just that I‟ve had to have a test to find that out...(P8. L306-8) ...as far as we knew it was only today to confirm that there‟s nothing wrong... (P9. L529-530).
Harry warned that “...sometimes the least you know the better off you are...” (L840) and quoted an old saying “...too much knowledge is a dangerous thing and sometimes too much knowledge for me ...might turn me off getting the job done...” (L842-5).
4.2.6 Acceptance Alternately, articulation of accepting the situation occurred in comparable ways though it was James, who stated “…you live a life of acceptance you can‟t alter things that come along…so why worry about it…” (L773-5). James appeared to have been the most accepting of all with similar statements throughout his interview: there‟s nothing to worry about…what will be will be…(L276, L391, L647 and 820), …if it‟s positive its positive there‟s nothing I can do about it… (L283-4). …what has to be done has to be done (L391-2). …when it happens it happens if it‟s painful it‟s painful…there‟s nothing you can do about it… (L782-3).
Ian favoured “…if you gotta have it done you gotta have it done and that‟s it…” (L535, 583) and “…if it happens it happens…” (L835-6). Acceptance was a way of not having to worry, and why worry because “there‟s nothing I can do about it…” (P10 L284 and L783) “…you can‟t alter it…” (P10 L648), “…can‟t do much about 72
it…” (P9 L820), “…these things have to be done so it‟s for me own good…I can accept that” (P8 L689-690), and “…that‟s life isn‟t it” (P8 L873).
Screening for any deadly disease can be fraught with many emotions. For the men in this study emotionally accepting the inevitable conflicted with automatic masculine behaviour and the denial of emotional reactions.
4.3 THEME 2 - FEAR, SHOCK AND EMOTION The second theme discusses how PCa screening made the participants feel emotional while dealing with pain, and privacy associated with TRUS-bx. In addition, the participants thought about aging and death, a confronting experience, as they coped with the time and nuisance of illness. Words like fear, shock, surprise, worry, and panic were commonly used to describe their experience during this time. Anticipating the worst was common, leading to increased fear and worry over the unknown. Some men dealt with these emotions by using jokes (4.2.2) and denial (4.2.5) already discussed. Fear and surprise was also present in the theme of „communication of information‟ (4.4.0) that depicted men who were unaware that PCa could involve them. This illustrates the overlapping and intertwining of the three themes.
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Derek was very fearful of what was going to happen during the TRUS-bx but said that if he had known the discomfort he was going to endure he would have been even more apprehensive. Greg‟s needle phobia resulted in him declaring that: P-Anticipating the injection was the worst. I hate injections…they said local anaesthetic, to me it‟s an injection… (L125-7). R-Where did you think this injection was going to go? P-Well this is the problem…I just went round and round and I thought oh I don‟t want to think about this … (L133-6) I mean I thought the injection would be in me bottom or even worse places and I thought I don‟t want to know this… (L151-2).
Derek lost sleep with worry he had many questions and concerns playing on his mind. the middle of the night something else and I wake up, „Oh God‟ you know...am I doing the right thing by going through this bodily, physical examination, invasion...I have had, I gave them the question again...is there any chance that if there is cancerous cells there that they would escape because of this invasion but I‟ve been reassured over and over again that it‟s very unlikely... (L342-352).
However, for some the shock of possible illness made them panic and worry even though many stated that they did not worry as a rule. For Craig it was a “…pretty big shock when you think you‟ve got cancer…it‟s a bit of a shock” (L246, 248) and “…you start worrying and doing a bit of panicking…” (L232-3). Brian said that his first reaction was “…shock this couldn‟t happen to me…” (L482-3) while Derek said he had experienced virtually all of the emotional reactions: “I had an initial moment of panic… WHAT and surprise…I was quite shocked that initial reaction took a while to sink in I didn‟t believe it…” (L130-2). In contrast, Ian warned to “…wait and see before you start panicking about this…” (L828-9).
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The experience and expression of worry manifested itself in various ways. For example, Harry tried not to worry despite realising that “subconsciously” he was, yet he did not want others to know: “what‟s the point in worrying anybody” (L537). Others quietly worried alone while slowly coming to terms with their circumstances. For Brian, who slept separately from his wife due to his snoring, the “…worst time is from going to bed, to going to sleep” (L359) when alone and quiet he started to think about things and worry.
Participants in this study reacted with shock and surprise when PSA and DRE results indicated a TRUS-bx was required. All of the participants mentioned supportive relationships with their spouses had assisted them to cope with the PCa screening. However, not all of the wives had been told exactly what the tests involved. Some men indicated confidence in their wives‟ knowledge while others either did not expect women to understand the extent of the tests, or were reluctant to endure an embarrassing discussion on the subject.
Harry voiced similar reactions to others when he described the apprehension of waiting for what is coming during the TRUS-bx: “…it was the apprehension of what was coming next …waiting for that click…that was the worst part…you‟re lying there waiting…” (L628-648). While Derek had been fearful of escaping cancer cells during the biopsy, others were fearful that something could go wrong after their TRUS-bx. All patients were administered prophylactic antibiotics and educated to recognise signs of infection:
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…the biggest worry I would have…is anticipation that something could go wrong with these tablets you take to try and keep the diseases away…the first few days I was upset…I didn‟t do much… (P1. L373-394).
The fear of the unknown was evident when these men knew little of what to expect in connection with pain they may undergo during the TRUS-bx.
4.3.1 Pain Through their displays of masculine traits already described, these men revealed an insight into how they dealt with pain and privacy during screening in the face of possible PCa. The interviews in this study were conducted on either the day of the TRUS-bx (50%), three days later (30%), five days (10%) up to a maximum of 7 days (10%) post bx, which captured immediate responses from most participants and eliminated time and memory fade. Each man was asked to rate the level of pain at the point of probe insertion, taking the core samples and post TRUS-bx. Table 4.2 demonstrates each man‟s experience of pain at those three points.
Not surprisingly, none of the participants thought the biopsy was painless as indicated in Table 4.2 although some found it more painful than others. References to the TRUS-bx gun noise being a “click” (P1 L236) and a “clang” (P9 L387) and the build up of tension waiting for it being the worst part were similar to those documented in Chapple et al (2007) and Oliffe (2004a & b). Adam thought it was “...not pain...its discomfort...” (L234), “...an initial pain then suddenly it goes...” (L345). Even though this was Adam‟s fourth or fifth TRUS-bx, he talked about the tension of waiting for the next biopsy. Ian said “…it was alright for me…” (359-360) though felt that it took “...a fair while...there‟s a little bit of pain...your sort of tense 76
ready for the next one...” (L659-661). Ian had given the highest pain score for the probe insertion (Table 4.2). He also said many times that he had “...put up with a lot worse...” (L286, 333, 334,355, 443, 702).
Pseudo -nym Adam Brian Craig Derek Ely Frank Greg Harry Ian James
No. Days Post Bx 3 days 7 days 3 days same day 5 days same day 3 days same day same day same day
Initial Insertion of Ultrasound Probe 5 5 3 0 4 1 0 4-5 2
TRUS-bx Core Samples 4 9 2 5-6 9 “snips” 0 “jolt” 2-3 3-4 3-4 4-5
Post Bx In Waiting Room 1 2 1-2 0 1 0 0 1
Table 4.2 TRUS-bx Pain Score 0 - 10
Harry also talked about the anticipation and though tolerable, his main complaint was that it was “intrusive and not a very nice...” (L871-3). Conversely, Greg thought it was no problem at all and explained that it was “…a breeze…” (L381), and more painful having the DRE with the Urologist. Greg was the only participant to have the Radiologist who used two Xylocaine injections for anaesthesia prior to the biopsy. Greg suffered from a quite severe needle phobia, though he was unaware of the injections as the nurse had told him the usual anaesthetic was Lignocaine gel (not knowing of the Radiologist‟s preference) and he believed that is what happened. James proffered “piece of cake, easy…uncomfortable but painless” (L181, 186), though explained when they “...tell you it‟s uncomfortable...they‟re not wrong...” (L62). He also stated it was not “...as bad as I was expecting...” (L102) adding he had a “...high pain barrier and I take things for granted...” (L66-7). On the contrary, 77
Brian found it “...very painful...” (L411) and that if “...I were God I‟d say right I‟ll change this, I‟ll get some other method” (L413-4). Brian was not happy with the discrepancy between what occurred and what he had heard. Brian had found out most of his information by asking others, they told him things like: ...it‟s a piece of cake... (L127) ...a lot of people...I spoke to ...said „oh it‟s a breeze, it‟s a breeze‟...even the doctor (name-Urologist) said „oh it‟s nothing‟. It‟s the worst experience I‟ve ever had in me life with pain... (L86-9) ...I‟d heard...about biopsies that it‟s a breeze I found the pain excruciating which is how I found it (L506-7). Derek also “...didn‟t find it easy to cope with...I expected some pain but I didn‟t know what sort of pain it would be...” (L362-5), and Frank was in so much pain at one stage that he was nauseous and broke out into a sweat despite being reluctant to say anything. Ely also found it “…uncomfortable and… painful…you gotta go in there grit your teeth and get it done…” (L349-351).
Chapple et al (2007) and Oliffe (2004a) also documented men who had difficulty enduring the TRUS-bx pain and sweating profusely. Chapple et al (2007) pointed out the stoic behaviour was commonly found with men from Anglo-Saxon and Irish cultures. Prior to the TRUS-bx not only was the pain of the procedure unknown, but also the way in which the biopsy was performed was unknown to these men.
4.3.2 Privacy As if the pain was not enough, the performance of the procedure was in a manner foreign to most of these participants. Adam said that the “...only people that‟s in the room with you are professionals ...what the hell it‟s not like your neighbours‟ll be there” (L702-4). Even so, Frank thought that the TRUS-bx was worse because “there 78
were four people in the room...three women and one man” (L91-93). Harry also thought it was “...not really comfy especially there was a nurse (female) there as well...” (L660-1). It was also the way the TRUS-bx was conducted that made men feel they were in a “...vulnerable situation...your just lying there...you feel a little bit helpless...”(P8 L667-670), and Frank agreed, remarking that the “...worst part is laying there with nothing on...” (L484). Adam could understand men‟s fear of the biopsy in that “...you‟re intruding on your privacy in a way because you‟re attacking your body...” (L758-9). Broom (2004) and Oliffe (2004a & b) had recorded similar statements from their participants concerning how the „public‟ nature and the passive positioning of their bodies, made men feel vulnerable.
4.3.3 Aging & Death Adam talked quite a lot about the concerns with the prostate and the high readings “as you get older…” (L452). James, the oldest of the participants, was involved in physical work almost daily with no intention of retiring. He refuted that he was too old for the tasks he does because “…in your mind you don‟t believe you‟re old because you still know…what you can and can‟t do…” (L602-3). Others stated they were happy with their lives so far and seemed to take an age related disease such as PCa as the next step. Ian commented that “...as you get older everything happens, old age, not the best is it…” (L833). Adam said, “At my age I don‟t feel much about the future…” (L574-5) and for Craig outliving his parents by 20 years was a bonus. Brian had taken to rethinking his football days and at a recent 50-year reunion, he saw a photo of 39 players, “…19 had died…10 …died with prostate cancer…make that 20” (L366-7); he added himself to that list which expressed his expectations that he would die of PCa. 79
Craig was convinced that he had PCa (his results were negative), “…I‟m pretty well sure that I have got it…” (L301-2), giving him morbid thoughts and questioning if it was …worth going on with or just…let nature take its course... (L650-1) …how long have I got…will it take me out in six, 12 months or two years… (L227-9).
Most men were very concerned about their wives and families coping after they had died, “…I think all blokes think of their family that‟s the impression I got…” (P2 L77). James openly spoke of euthanasia and not wanting to be a burden on anyone or the country, but he questioned whether anyone would do it when the time came. He was also the only man to ask how long screening would go on for, as “I don‟t want to be a burden to the medical profession…and the budget…” (L876-7), stating that he would not be against being “…cut off the list…” (L881) when told that there is some debate over the topic of age at which to end screening. Gray et al‟s (2002) participants also related aging to ill health and illness to aging, culminating in declining health and eventual demise.
4.3.4 Time & Nuisance All of the participants in this study were retired and they all remained active in various ways. After their GP had conducted the PSA and DRE tests, seven participants were referred to a private Urologist. A few men were annoyed with the amount of time and anguish spent waiting up to two or three months for an appointment with their Urologist. Conversely, three men from rural areas did not visit a Urologist; instead they were referred for their TRUS-bx by a specialist GP. While others articulated not only their frustration with the time taken for testing and 80
the thoughts of future tests and treatment, there was also the nuisance factor to consider as it interfered with their activities.
Adam was a “doer” (L804) in that he would much rather be busy in his shed making things or going for his daily run that going to the hospital because it “…would distract me to a degree…” (L806). James and Brian agreed: …I can honestly say the worst part is that it‟s cut into my time…it does interfere with my time and I hate waiting around that‟s the worst part of today (P10 L82831). …I get a little bit irritable with the time that these things take…if I have to have radiotherapy…that‟s an hour there and hour back and only five minutes to have the test apparently, and you can‟t get a park, this makes me irritable… (P2 L271-5).
For others waiting two or in the case of Ian, three months to get into a Urologist was found to be “…far too long…” (P3 L208), “…you think my God that‟s a long time…two months before I find out anything…” (P7 L864, 879-880). This study‟s cohort were quite unique in that seven men had moved from their GP, who conducted their PSA and DRE, and then referred them to a private Urologist, who then referred them to a public hospital Radiology Unit for their TRUS-bx.
Despite the fact that time and nuisance were important issues to some participants in this study, the topic did not arise in the reviewed literature. However, the importance of the information given to the participants was significant.
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4.4 THEME 3 – COMMUNICATION OF INFORMATION The men in this study acknowledged that they knew nothing or very little about PCa or PCa screening. Information took many forms from what medical staff communicated, to word of mouth. Incorporated in the theme
of
information
are
the
sub-themes
of
„awareness‟, „appreciating honesty‟ and „what I would tell another man‟. Due to the lack of awareness of PCa, many men suffered shock and surprise when information was imparted. Hence the theme of „fear and „emotion‟ now overlaps with the communication of information and the „masculine behaviour‟ men use to deal with it.
4.4.1 Awareness - (confusion, consent, false information) Variances in the communication of information resulted in diversity in knowledge and confusion, replete with false information. Lack of information from some of the treating GPs or medical professionals occurred. Three of the participants were having tests that they knew nothing about and had not consented to, hence the added surprise when results were positive and further invasive tests were required.
Most men in this study knew very little about PCa screening until they were personally involved. Participants were unaware of where the prostate was in the body or the medical terminology. When information trickled in it came from personal experiences of colleagues, friends and family, medical personnel, and contact with the Radiology Unit or written information in pamphlets. Only one man searched the
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internet but he remained confused and the only participant to proactively self educate was the only man who knew his results were positive when interviewed.
When information was disclosed by the medical professionals, it was often a shock with the details being a surprise and not always understood, as Brian said: not a lot that I understood, he told me quite a bit but at that stage I wasn‟t thinking prostate at all and I didn‟t comprehend a lot what he was talking about because it was so quick… (L28-30).
Though Adam mentioned that “I don‟t take things for granted if I wasn‟t sure on what that person said and what it meant I would certainly ask…I understood” (L609610). Some men did not get much information until they went to their Urologist who often gave them written information to take away. For those men who were not referred to a Urologist there appeared to be a greater lack of information both verbal and written.
In Derek‟s case, even though he visited a Urologist and had searched the internet he still remained unaware. Due to this lack of information and confusion, his imagination ran wild as to how it would be possible to get a camera and equipment to snip off pieces of his prostate, into his rectum: …the main worry was they‟re going to puncture my rectum to get to the prostate and that was really disconcerting idea…up until today I didn‟t know what size machine they were going to try and get into my bottom so I thought…are they gunna expand my opening to get the big piece of equipment in there or what… (L473-484). …it‟s probably a bit primitive…a bit ignorant but…I was just imagining are they gunna send a camera in there … (L651-653).
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It was not until the nurse in the Radiology Unit interviewed Derek, before his biopsy, that he discovered the equipment was “…just a third of the size of a pen…it‟s invasive enough with a tiny little tube…” (L486-4, 497-8). He wished he had that information from the Urologist with an indication of where the prostate was and the size of the equipment, rather than thinking “…am I gunna have…my anus expanded…I don‟t really need that…” (L 646-9). However, it is not uncommon for people not to hear everything they are told when faced with the possibility of a cancer diagnosis.
For Harry the whole PCa screening process came as a surprise because he believed it was possible to determine that information from a blood test: …It‟s just ignorance really I suppose…because nobody ever spoke to or explained it to you… (L506-8) …I thought they could tell by a blood test, wasn‟t until he suggested that I have a digital test…that was the first time that I thought shit there could be something wrong here, but up till that point I thought they could tell everything with a blood test, even to the point where if you had a blood test they could pick cancer out… (L856-861)
A number of confusing aspects of PCa and PCa screening arose. They included confusion between symptoms of PCa and enlarged prostate with men thinking they were the same. Brian had believed this was true and this encouraged him to think “…beauty I haven‟t got prostate cancer…” (L182). Likewise, when Ely was asked if his GP had explained to him what PSA meant he said, “Yes, he said it was…an enlarged prostate „cause he put his finger up me bum and felt it” (L127-8). This of course is incorrect as PSA is a blood test and an enlarged prostate and PCa are two different things.
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Derek suffered further confusion concerning his Urologist visit, the TRUS-bx and sequence of events due to lack of thorough explanation and his own assumptions: …the doctor said I need a biopsy go and see (name-Urologist)…I went there thinking…I was going to have a biopsy…my wife said are you gunna do a biopsy now …he said no I don‟t do that here you have to go to radiology for that. I thought they might have had the equipment …there „cause that was…at the hospital I thought that was all going to happen then…I went there all psyched up to have a biopsy…all we did was…chat and a rectal examination…oh no this is dragging on… (L308-328).
For Brian, Craig and Harry (30%) no consent was given to conduct a PSA test and therefore they were unaware they were being screened. Instead, their PSA tests were included as part of screening for the likes of diabetes and post-pneumonia check-up. Consequently, they were surprised when they discovered their PSA was elevated and for Harry it was only when “…he asked me to come in for a digital test and that was the first time I knew about it” (L54-5). When asked if PSA was explained Harry admitted that “…he probably did but I just don‟t understand medical terms and things…I just go along with whatever…” (L73-5). There is evidence in the research literature that men need to know that the PCa screening trajectory involves three tests; men needed to be aware of the complications and consequences of each test to make a commitment to PCa screening (Oliffe, 2006; Laws, 2004; Carter, 2003). This fact is supported by the evidence in the findings for the participants in this study.
There were further links between PCa and false information that participants believed to be true. A couple of men were advised to take vitamin supplements to ward off PCa. Frank was told you “…can‟t have sex anymore…” (L136). Brian was told how painless and easy the Trus-bx would be, and when he found it to be quite 85
the opposite (4.3.1) he was very disappointed. Clinicians telling men that the pain of TRUS-bx would be tolerable and that anaesthesia was unnecessary was also alluded to by Oliffe (2004a & b).
4.4.2 Appreciating Honesty Participants were grateful when the information imparted was honest and straight forward so they could „prepare‟ themselves for what was to come. For Brian and Derek the honest information given to them by the sonographer in the Radiology Unit was extremely important and appreciated: …I feel a lot better knowing more I think that‟s the crux of the whole thing… (P2 L 352-4) …he told me…and didn‟t pull back from saying its gunna hurt which prepared me to have it…that helped me a lot with the pain…that‟s the straight forward answers that your getting…I liked the way I was told the information, he was dead right too it hurt like hell but he prepared me for it. (P2 L92-108)
The sonographer who took Derek into the room warned him that: …whatever the nurses told you about how easy this is gunna be don‟t believe them its gunna be painful and I thought oh! …I‟m glad that he was straight up front about it because I wasn‟t expecting it to be that painful but he did say it was gunna be… (P4 L368-374).
The story was similar when honest information came from a Urologist: “…I appreciated that he told me what was going to happen and it did…that was wonderful…nothing there surprised me” (Craig L450-3).
4.4.3 What I Would Tell Another Man While men prefer to receive honest information, when it came to telling others 86
participants were not always that honest with the information they would pass on. These participants felt that the PSA was nothing more than a simple blood test, even though they had gone through the full screening, as illustrated by Oliffe (2006). The men still did not realise or acknowledge that a PSA is more than a blood test, it is a commitment to a PCa screening trajectory that could lead to painful tests and treatment. An explanation of the DRE, “finger up the bum” (P1 L617) was surrounded by jokes and the TRUS-bx proved to be far more difficult to talk about. The men passed on information to other men using the hegemonic masculine trait already exposed, removing traces of fear and emotion while denying others the whole “story” (Broom, 2004; Wall & Kristjanson, 2004).
For some men the TRUS-bx was bearable and they would advise other men to have it done. Craig‟s advice would include just “…relax…and do exactly what they tell you if they gotta go in the rear end they got to…that‟s the only way they‟ll find out…” (L632-5). Derek was not so forgiving of the situation and stated “…if you gotta have it have it but it‟s not comfortable it‟s not a nice experience…very disconcerting…” (L421-4), later adding “I could say …it‟s just a little tube that would be something that I wished someone had said before” (L638-9). Harry explained what actually happened in his case: …it‟s a little bit intrusive but it‟s nothing to worry about (L154-5) …basically they put a probe up, they got pictures of the prostate they found where the best part to take the biopsies from and they done… six…they explained everything…there was nothing to fear… (P8 L559-564).
Despite finding it uncomfortable, Adam would not necessarily state that, instead basing the information on what he believed the „character‟ of the other man to be: 87
P- …if he‟s a nervous type then I‟m not sure I‟d explain it totally R-Which bit would you leave out. P- ...the pain bit...the discomfort bit...I‟d let him work that one out...how can you explain the discomfort...but to someone probably, maybe not so strong... I probable might leave that out if I didn‟t know that person well... depending if he were strong I might...leave that click that five percent out... (L627-638)
The biggest surprise came from Frank‟s change of heart occurring during the interview: P- I‟d say piece of cake R-But didn‟t you say that that was awful? P-It was but if I say it‟s awful maybe they‟d change their mind and you don‟t want them to change their mind do you? (L287-290) ...looking back it wasn‟t that bad at all...when I was in there it was worse but now... anyone could do it I wouldn‟t say it was really bad to anybody now... I‟d tell them exactly what‟s involved and that it doesn‟t hurt, I‟d be telling a lie but ha-ha, I‟d tell them it hurts a little bit... (P6 L502-520).
All participants said they would talk to another man if he asked but they would not begin a conversation on the topic of PCa screening, therefore maintaining the „code of silence‟. This point will be further developed in the discussion chapter to follow.
4.5 SUMMARY The findings from this study have revealed how men operate within their individual masculine framework when faced with the prospect of PCa. Going through PCa screening was invasive and confronting to their sense of masculinity. Men handled the topic of anal penetration with jokes, toughness, denial and silence. These men felt they had no alternative but to go through the screening no matter how anxious 88
and naive they were concerning the processes because „how else would you know‟. As their knowledge was limited, information was very important and yet it was not a subject to discuss with others. Throughout the process of screening men remained tormented with fear, anticipation of the next test, and what their futures held.
This chapter has highlighted the major findings from interviews of ten men undergoing PCa screening. The following chapter will further examine these findings and discuss the major outcomes.
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CHAPTER 5 DISCUSSION 5.1 INTRODUCTION The previous chapter presented the three themes and sub-units emerging from interviews with ten men. These themes were encircled by the „cycle of silence‟ leading to the development of a conceptual model that is depicted in a diagrammatic form below (Figure 5.1).
Figure 5.1 The ‘cycle of silence’ surrounding and interwoven with the main three themes. This conceptual model depicts men coming to PCa screening with little knowledge, appreciating honest information for themselves, but would not talk about it (Code of silence), while what they would tell another man was not the truth or the whole story, leading to why men come to screening with little knowledge = ‘Cycle of Silence’
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The literature reviewed in Chapter Two highlighted that little was known of the PCa screening trajectory from men‟s point of view. The focus of this study was unique in its concentration on only the PCa screening perspective, within a very short timeframe. Highlighted within this thesis was the „code of silence‟ within the „Masculine Behaviour‟ theme. The „code of silence‟ stoped men from talking about PCa or screening. When this silence was added to the sub theme „what I would tell another man” within the „Communication of Information‟ theme, the silence was deafening. These behaviours and the contrasting „appreciating honesty‟ within the „Communication of Information‟ theme have brought about the development of the „cycle of silence‟. The „cycle of silence‟ incorporates factors that perpetuate silence among men, concerning PCa screening.
Typically, it suggests that masculinity and masculine behaviour were the driving force that perpetuated the „code of silence‟ and stopped men from discussing their screening experience with other men. Men wanted to remain strong, in control, and to appear nothing less than heterosexual and fearless. In order to do so they did not discuss the process of screening unless it was a joke with the boys and only if someone asked them would they talk about their experience. What they „would say to another man‟ was not total disclosure, and yet what they required and appreciated for themselves, was honesty, when information was divulged. By not revealing the facts concerning PCa screening, men were leaving other men in the dark and perpetuating the „cycle of silence‟. The „cycle of silence‟ (more than the „code of silence‟ mentioned earlier) exists in order to allow men to retain their dignity and sense of masculinity, while allowing them freedom from the embarrassment of undignified, invasive and unmanly procedures. 91
This chapter will discuss the major findings of the study, expand on the meaning of masculinity, and proffer both opposite and accordant viewpoints within the thematic groups, while referring to how they relate to the „cycle of silence‟.
5.2 MAJOR FINDINGS OF THIS STUDY This study sought to delve inside the participants‟ world and discover the uniqueness of their individual experience of PCa screening. This multiple case study sample did not intend to represent the population or generalise, but reflect the distinctive collective voiced by these participants (Stake, 2000; Bernard, 2004). Here, face-toface semi-structured interview questions allowed the use of each man‟s voice, giving deeper insight into the areas important to him. In Chapter Three, demographic and screening data were combined with participant interviews for analysis. Individual „case‟ and „cross-case‟, thematic analysis has proved robust in determining the three themes of „Masculine Behaviour, „Fear, Shock & Emotion‟ and „Communication of Information‟.
Within the theme of „Masculine Behaviour‟, there existed men‟s „code of silence‟, which prevented men from discussing PCa screening, or conveying information. This study has shown the lack of knowledge of PCa and PCa screening that existed among a group of urban and rural men from varying backgrounds. It appeared that these participants while knowing little of PCa screening may have had friends, relatives or colleagues who had PCa screening, yet they had not discussed it with each other. Such was their reluctance for this type of personal dialogue. The findings revealed men also desired and appreciated honest information, yet when it came to them sharing information with another man it was a different story. This „cycle of silence‟, 92
born out of men‟s disdain to discuss these issues, has exposed how and why so many men knew so little about a disease that affects so many of them. Consequently, men‟s „cycle of silence‟ now envelops the three central themes because they all affect it and are affected by it.
The previous chapter highlighted the findings of three themes that are discussed next. The major outcomes will be discussed from their focus of difference or in concordance with the themes and in relation to the „cycle of silence‟ that permeated through all of the themes. The meaning of masculinity evidenced in this study, supports and envelopes these findings and will be explored along with the „cycle of silence‟.
5.2.1 Expanding On the Meaning of Masculinity The researcher acknowledges that the perception of hegemonic masculinity in this study was influenced by her inherent views, preconceptions and life experiences. It was also influenced by the literature review carried out in Chapter Two, which provided background information and notions of hegemonic masculinity from many viewpoints and authors. When Mosse (1996) considered the historical evolution of masculinity, he stated that the male physique was the basis of the stereotype of masculinity that persists today. Modern images of masculinity include dominant, powerful, toughness, competitiveness, risk taking, physical strength, self-sufficiency, success, aggression, stoicism and self-control. This view is reflected in traits of sexual prowess, heterosexism, homophobia, problem-solving, bread winner, fatherhood, protector, lack of seeking helping, or health seeking and avoidance of showing emotions since “real men don‟t cry” (Mosse, 1996; Newman, 1997, Taylor 93
et al, 1998; Gray et al, 2002; Oliffe, 2004a; Broom, 2004; Wall & Kristjanson, 2005; Laws, 2006; Oliffe, 2006; Smith, 2007; Arrington, 2008; Maliski et al, 2008).
Society and the media have culturally constructed these stereotypical forms of hegemonic masculinity that together with the expectation of political correctness are deemed acceptable. This masculinity dictates how men should behave and what they should do in regard to the denial of illness or symptoms, risk taking, and lack of help seeking (Mosse, 1996; Newman, 1997; Taylor et al, 1998; Gray et al, 2002; Broom, 2004; Oliffe, 2004a & 2006; Wall and Kristjanson, 2005; McVittie & Willock, 2006; Smith, 2007; Arrington, 2008; Maliski et al, 2008).
Not all men displayed every aspect of these masculinity behaviours but they all exhibited some parts of it in various ways. The participants displayed forms of masculinity that were completely challenged and compromised when they were faced with ill health and unmanly tests. These tests released them from their dominant roles and masculine traits, rendering them fearful, vulnerable and defenseless. Men masked these feelings with jokes, bravado, denial and silence. PCa screening was collectively experienced as difficult to undertake and discuss. Most found it invasive, uncomfortable and an affront to their masculinity, fearing connotations of homosexuality and a threat to their own sense of „manhood‟ or ability to perform sexually. That data is the reason why the theme of „Masculine Behaviour‟ is such a strong finding in this study.
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5.3 OBSCURING MASCULINE BEHAVIOUR This section will further discuss outcomes of the areas to emerge from this study from the perspective of opposition or agreement with what was disclosed by the participants. These topics include the justification of anal penetration, jokes that stop being funny when it comes to the TRUS-bx, and concerns of „manhood‟ and loss of ability to perform sexually. The „code of silence‟ is broken down and „decoded, while the issue of disbelief that PCa may be happening to these men and the laidback accepting attitude of „what will be will be‟ are all discussed in relation to the „cycle of silence‟.
5.3.1 Justification of Anal Penetration Some men went along with what their doctor suggested concerning PCa screening and moved forward to the next test. Mostly men trusted their doctor‟s professional medical judgement and believed it to be for their own good. However, this study found that participants were averse to the DRE and TRUS-bx component of screening, finding them an affront to the hegemonic masculinity already discussed. Their dominant expressions included concerns of pain, privacy and the passive vulnerable position of the TRUS-bx, particularly when women were in the room, no matter what their role. Grey et al (2002), Broom (2004), Oliffe (2004a & b) and Chapple et al (2007) all had similar findings in their studies. One man in this study agreed that the anus was a „no go zone‟ and another that „below the belt is below the belt‟; in other words „don‟t go there‟, it is not up for discussion. Australian men‟s overt sense and expression of their masculinity were also found to be at odds with anal penetration in the studies by Oliffe (2004a & 2004b, 2006) and Broom (2004).
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However, during their interviews, some men in this study started to justify why tests performed needed to be anal. For some men justification was a realisation that they had naturally come to themselves, and for others it was accompanied by an explanation of the procedure by medical staff. Once they had received an explanation and realised the anal approach was the quickest and easiest way, men were happy with that „justification‟ for the very unmanly invasion. In justifying anal penetration, men here let go of the homosexual connotations and the jokes that ensued, instead they accepted that the anal approach was the most direct method. This finding is unique in that none of the studies in the literature reported men‟s justification of anal penetration to assist them in an acceptance of its use.
Adam had been through this procedure many times and although he still did not like the anal penetration he understood or justified why it had to occur that way: ...obviously, the tests would need to be done... I don‟t like the finger up the bum but that‟s the easiest way of checking initially... (486-7). No initially I think when I become aware that as the older you get that the prostate is going to be a concern... then they were going to do this test I thought, “Aye” then I sat down and think well how else would they find out, (693-6). I‟ve never been aware of people sticking fingers up bums what for I‟m quite comfortable with it now there are reasons for it otherwise I wouldn‟t allow them to do it (710-12).
Due to the extent and depth of hegemonic masculinity already expressed, it is not surprising that the men started to justify anal penetration. When previous tests proved positive and TRUS-bx was recommended, men continued with the screening trajectory despite knowing it would be unpleasant. In this study and the literature it has been expressed how offensive anal testing is to heterosexual men and yet feeling 96
that repulsion men still had the test. This knowledge had given men justification for anal penetration, a coping mechanism, which was a way of accepting the affront to their masculinity that absolved them from homosexual nuances.
5.3.2 Not So Funny Now Men found anal penetration to be stigmatising and verging on homoeroticism. The anal penetration was the focus of jokes so most men could cope with the topic. Despite their true feelings, men masked their emotions and embarrassment by employing humour and jokes during their interactions with other men. Most men found it easier to go along with the other „blokes‟ when discussing the invasiveness of the anal penetration. Similar findings were discovered by Chapple et al (2007), Oliffe (2004a, 2004b, 2006) and Broom (2004) in their studies. Homosexual jokes tended to be common. Oliffe (2004a) observed that some men in his study referred to the fact they were glad that they were not homosexual, and similar comments were expressed in this study.
One man mentioned that he could not believe he was joking about issues concerning his genital area at his age. It could be argued that this type of embarrassment, joking and teasing could be expected of young men who have not yet come to terms with their sexuality. However, it seems that older men utilise the same tactics from boyhood. The „cycle of silence‟ began here. Rather than discuss the issues and gather information concerning PCa screening, men dismissed the problem with a joke and banter where other men were concerned, and began to employ the stoicism that would get them through.
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Perhaps men needed to become more comfortable with their bodies and understand that from a medical point of view, these procedures have nothing to do with sex or sexuality, but rather health and living. Doing so may enable men to divorce themselves from the discomfort, embarrassment and jokes that so adversely affected their sense of masculinity.
5.3.3 ‘Manhood’ and Sexuality While two men said that their sex life was over and another said it had ceased but it was up to „her‟, five men did not broach the topic at all. However, another two men spoke openly about concerns of potential loss of ability to perform sexually, finding the prospect daunting. The inability to have an erection and „perform‟ was akin to the loss of „manhood‟ and proved worrisome for these two men. The thought that if you cannot „perform‟ you are no longer a man, made one participant question what he would be without his „manhood‟. The connection between loss of ability to perform sexually and loss of „manhood‟ was stated in the literature as being “part of the male psyche” (Newman, 1997; Gray et al, 2002; Broom, 2004). The two men in this study were quite candid about their sexuality to the point that one man stated he felt it was the last thing to „go‟ for men. They were concerned that they were going to lose their „manhood‟ well before they had expected to. It would appear that the men did not want to discuss the topic of sexuality if it epitomised who and what they were to such a strong and very masculine degree. Here, the „cycle of silence‟ continued to turn and now involved the subject of sexuality, which is why the topic of „manhood‟ was not up for debate, and why men avoided such personal issues.
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5.3.4 Decoding the ‘Code of Silence’ These links to homosexuality, jokes, bravery, pain and stoicism could all be involved in the discrepancy between what men felt and what they would say to another man. The „code of silence‟ coined by Broom (2004) was apparent among the participants in this study and in those by Gray et al (2000 and 2002). The humour only went so far in that when it came to the TRUS-bx the topic became deadly serious as masculine traits denied involvement in practices that left men vulnerable and suffering embarrassment and pain. At this point men stopped talking and joking about their PCa screening. Broom (2004) discussed the stigma of anal penetration as being another reason for non-disclosure when describing Australian males‟ beliefs about health and their masculine expectations of themselves. The „code of silence‟ is what helped to perpetuate the „cycle of silence‟, by not passing on information to other men for the fear of appearing anything less than masculine and in control.
Another concern that one participant commented on was that if he told another man the truth, the man might change his mind and not have the test done. This problem was of great concern due to the responsibility of someone else‟s health and the difference between an early diagnosis and finding out too late. The „code of silence‟ was also involved in denying women the knowledge as it is „a man thing‟ and men believe women do not understand, or perhaps the men here were too uncomfortable to tell them.
5.3.5 It Can’t Be Me Additionally there was the use of denial in the face of illness by some men while others preferred to deal with it later and cross that bridge when they got to it. At this 99
point, the „cycle of silence‟ went underground with a refusal to accept the prospect of the inevitable offensive tests and prospect of ill health. Likewise, men who were in denial were not talking about the issues surrounding their PCa screening. The examples of Greg (4.2.6.1) and Ely (4.2.6.2) demonstrated the varieties of overt denial possible when men were faced with PCa. Some men could not believe it was happening to them, that they could possibly be a PCa candidate; others said they were only having the tests to confirm that nothing was wrong. Derek wanted his PSA re-done, as he could not believe there was anything wrong with him. Denial also occurred because of the seeming lack of symptoms where the men felt well and did not have any problems. Similar to the men in this study, Bailey et al‟s (2007) participants also found it difficult to accept the possibility of having PCa due to lack of symptoms that were expected to accompany PCa. Bailey et al (2007) also discovered shelving and bracketing of emotions so that men did not need to deal with illness and could get on with their daily life.
According to Vos and de Haes (2006) this type of denial is more prevalent in the elderly. For cancer patients who have more trouble accepting their diagnosis they suffer higher rates of anxiety, depression, helplessness, and experience poorer QOL and more disturbing feelings as was evidenced by Brian who did know his results (Roy et al, 2005; Vos & de Haes, 2007). Conversely, Sharpley and Christie (2007) and Gray et al (2000) suggest that denial can actually be a psychologically beneficial approach as it can decrease depression and boost coping mechanisms by minimising the effects of illness on everyday life.
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5.3.6 What Will Be Will Be In opposition to „denial‟, some participants were just getting on with life and accepting the next step as advised by their physician. Men in this study felt there was nothing they could do about it and that they had to face the facts or that ill health was just another part of life. While some men stated that they could just as likely get hit by a bus or drop dead from a heart attack than die of PCa, they also felt that their potential for life-threatening disease was increasing for them with advancing age. However, even during acceptance, the „cycle of silence‟ was still there and travelling underground. These men were just going through the motions, getting on with it and doing as advised by physicians. They could not be bothered worrying or talking about their PCa screening. The question could be asked: is this type of acceptance actually more like a form of passive denial? On the other hand, was it related to the fact that there was nothing they could do about it until their results were available, so they were ignoring it and accepting the path they were on, for the moment? Either way, men were not interested in talking about it.
5.4 GETTING IN TOUCH WITH FEELINGS The following section discusses how men felt during their PCa screening from the perspective of the pain experienced, and their reflections on coming to the end of life. Their preference to be actively involved in their pastimes, rather than attending medical appointments and procedures was evident.
The ability to show and admit to fear and to share these feelings with the researcher exposed each participant‟s sense of helplessness as they experienced a foreign world of emotional reactions and conflict over masculine stoicism and honesty. It was here 101
that the emotional side of PCa screening made men feel vulnerable, and why their stoicism to pain, concerns of aging, death, time, and nuisance were perpetuated through the „cycle of silence‟.
Steginga (2001), Llorente et al (2005) and Arrington (2008) argued that the affect of fearing a diagnosis of PCa, with the accompanying emotions and sense of vulnerability, could be overwhelming and lead to depression and morbid thoughts. Indeed Craig, whose interview showed the highest degree of emotional responses out of all 10 participants, was the man who felt sure that he had PCa (his results were negative). Participants in this study were shocked, surprised and could not believe they might have PCa. Some said they panicked and others felt the fear that things were starting to all go wrong for them. Maliski et al (2008) stated that for men who hold rather inflexible notions concerning masculinity, they may find the stress of ill health affects them more severely than for men who hold notions that are more openminded. Perhaps it could be that the more open-minded men with flexible ideals of masculinity are the same men who display more „acceptance‟ through acknowledgement that age brings more likelihood of illness.
These issues of fear were prevalent throughout both the current study and the literature (Oliffe, 2004a & b; Broom, 2004; Chapple et al 2007). „Fear, Shock and Emotion‟ permeated through the themes of „Masculine Behaviour‟ and „Communication of Information‟ as the lack of knowledge and information affected the socially constructed cultural norms and masculine performances of these men (Mosse, 1996; Newman, 1997; Taylor, 1998; Wall & Kristjanson, 2005; Smith 2007; Maliski et al, 2008). This study found the emotional responses of fear, shock, worry, 102
panic, and surprise (Gray, 2000; Oliffe, 2006, 2004a & b; Chapple et al, 2007), appreciation of supportive partners (Gray et al, 2000) and professional medical staff (Oliffe & Thorne, 2007) were consistent with the literature.
5.4.1 Variances in Pain Oliffe (2004a & b) observed that if men do not complain about the pain and continue with stoic masculine behaviour, clinicians are unaware of how tolerable the procedure really is. Once again, this stoicism in the face of pain was another means by which the „cycle of silence‟ was perpetuated. When men did not speak up about their discomfort whether physical or emotional pain, they were not allowing physicians to assist or alleviate the symptoms, nor were they allowing other men insight into what appeared to be one of the worst elements of PCa screening.
This study uncovered men who had difficulty enduring the TRUS-bx pain and were sweating profusely, which echoes the findings of Chapple et al (2007) and Oliffe (2004a). TRUS-bx pain, anticipation of the next „snip‟, the sound of the „gun‟, embarrassment and displays of stoicism were reported in this study. Most men discussed the sound of the gun and the tensing of muscles that anticipation of the bx gun „going off‟ caused. While some participants were concerned about the side effects of the TRUS-bx that they were warned of, no adverse outcomes were reported to the researcher‟s knowledge. Conversely adverse side effects of TRUS-bx reported by Chapple et al (2007) and Oliffe (2004a) included loss of sexual interest, sliced rectal vein, anal blood loss, anal soreness, cystitis, septicaemia and haematospermia.
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When discussing pain it appeared that, there was a variance between the pain experience with the ultrasound probe insertion and the biopsy, as opposed to the post-biopsy pain. The different levels of pain associated with TRUS-bx were discovered by asking men to rate their pain of the ultrasound probe, the biopsy „snips‟, and the post-biopsy pain, from 0-10 with 0 being no pain and 10 the worst pain experienced. Once men were dressed, sitting in the waiting room having a sandwich and a „cuppa‟, their pain had reduced to no pain or up to a maximum of 2/10. This study is the only one to the researcher‟s knowledge that differentiated between the pain of the probe, the biopsy „snips‟ and post-biopsy pain.
These pain levels are worth serious consideration in respect to future pain relief during the TRUS-bx, as it appears that pain relief only needs to be short acting. Another advantage of this study was that it was conducted so soon after the TRUSbx‟s that the memory of what happened and the intensity of the pain and emotion were still very raw. Half of the interviews were conducted on the day of the TRUSbx with the others on days three (30%), five (10%), and seven (10%) post-TRUS-bx, that reduced time misrepresentation or recall. Conversely, a few of the studies in the literature stated vast differences of time between PCa screening and their interviews allowing for the introduction of memory lapses.
Many authors have written on the benefits and drawbacks of various forms of anaesthesia including cost effectiveness and extra time and resources required for its administration (Kravchick et al, 2005; Horinga et al, 2006; Turgut et al, 2008; Giannarini et al, 2009) to mention a few. A full discussion of the variables of
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anaesthesia is not within the scope of this thesis; it is enough to say that the Radiologists in the Radiology Unit mostly use Lignocaine gel.
The discovery that the pain did not last for long is comforting information for other men coming into PCa screening. It may also assist Radiologists and Urologists who are assessing pain management because pain relief only needs to be short acting due to both the short time taken to perform the TRUS-bx and the speed with which the pain dissipates.
5.4.2 Coming to the End There was superficial mention of suicide by the men involved in this research. However, euthanasia was discussed in-depth with one participant and others questioned whether they would bother with treatment (if their results were positive) and instead just let nature take its course. Llorente et al (2005) discussed late-life suicide and specified that there was an association between suicide and cancer diagnosis. In older men with PCa this equates to “4.24 times that of an age and gender specific cohort” (Llorente et al, 2005, p. 195). The men undergoing PCa screening showed signs of stress, anxiety and worry that potentially could easily lead to depression and morbid thoughts given a diagnosis of cancer.
Thoughts concerning death were not surprising in that the men undergoing PCa screening had thought of the possibility of positive results and recognised that death could be a possible outcome. However, when some men actually voiced these thoughts and when one man discussed euthanasia very seriously it was quite a surprisingly honest and emotional admission. When men spoke of death, dying and 105
euthanasia, they exhibited evidence that if their results were positive, they might just give up and not fight. Giving up would only encourage the „cycle of silence‟ to continue on. The type of worry and stress involved with these thoughts, and feelings need serious consideration as they can lead to depression, which appropriately trained professionals need to address.
5.4.3 On Home Ground Another topic unique to this study was the issue of time and nuisance. The subject related to time waiting to see the specialist for some men. To others, it was associated with time away from their activities and spent sitting around in waiting rooms. For the more rural participants the time taken to drive or fly to city locations for further tests or treatment was another cause of „time & nuisance‟. While Gray et al (2000) discussed making room for cancer the men in that study mostly had ill family members to care for or were working. The men in this study had all retired and yet were also aggravated by the time taken to travel to, and have PCa screening. They found the prospect of further time away from their personal pursuits to be most bothersome. These men would rather be in their „shed‟ than a medical waiting room.
Time spent waiting for an appointment with a Urologist was found to be excessive and generally discussed early to mid-interview. It was not until later in the interviews that the notion of „nuisance‟ emerged. These men had been discussing how awful their screening experience was and were opening up about their feelings when they showed another side of their „masculine behaviour‟ by appearing more interested in being in their shed, than spending time in medical facilities or having tests. They felt that time waiting around for tests was a gross interruption to their normal schedule 106
and disrupted their routines. It was not that men were more interested in their hobbies and more masculine activities than their health because they were actually there having PCa screening. However, it was also possible that being in their shed felt much „safer‟ than a medical facility. They would much rather be on „home ground‟ than foreign territory. It could be said that the preference to be in the shed, on home ground, was a way or an excuse to disengage from the issue of PCa screening and reinforced the „cycle of silence‟ in that it showed men‟s preference for their own safe territory. These issues also posed the question that, do we as a society view retired older people as having an abundance of time and not consider that the elderly actually still have active, productive lives to maintain and enjoy? Time is therefore just as important, if not more so, to older people.
5.5 TELL ME, TELL HIM, TELL THEM The theme of communication of information is where the „cycle of silence‟ was truly perpetuated. This section looks at the communication of information and what this study has discovered about men who came into PCa screening with no or little knowledge. Participants stated they really appreciated it when someone else told them the truth, and yet held back and concealed information from other men.
5.5.1 What and Why They Did Not Know When asked if they were aware of PCa screening men in this study revealed that they knew “nothing”, “not a lot”, “hardly anything”, “had no idea”, “heard of it”, were “ignorant of it” and thought that “if you were over 70 years of age you might have PCa”. Participants did not know where the prostate was in their body or how to get to it, had not heard of PSA, DRE or TRUS-bx or if they had, thought it was a big 107
injection and that PCa screening was just a blood test. One man believed that if you got PCa at his age it was a death sentence. It was hard to believe that few participants were aware of basic PCa information until after the screening process had begun, and indeed, for some it was not until they arrived in the Radiology Unit that they learnt the facts.
It is difficult to understand why men knew so little about PCa screening when the amount of media reporting is considered. Increasingly, famous television, film and sporting personalities have released media reports concerning their PCa although there are many inaccuracies made in media reports (MacKenzie, Chapman, Barratt, & Holding, 2007).
MacKenzie et al (2007) found 436 statements concerning PCa on television and newspapers in Australia from 2003 to 2006. While 10% of the statements contained incorrect information and side effects of treatments were downplayed significantly, 86% of comments framed screening as desirable, with 41% stating the importance of screening on mortality rates. Given this media coverage, it was surprising that men in this study were so unaware of PCa screening. For men who took notice of the media coverage it would not be abnormal for them to believe that PCa screening was a wise course of action. However, the evidence that is emerging from a number of longitudinal, large scale trials in Europe, the USA and the UK (Appendices 8.2.18.2.3) claim there is a lack of evidence to support population screening. Most people would be unaware of these trials as they are not reported in the media (MacKenzie, Chapman, Holding, & McGeechan, 2007).
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Lack of consent when PSA tests were included with other blood screens caused shock and surprise among the participants in this study. Similar findings were revealed in studies by Oliffe (2006) and Gray et al (2002). The results of this study showed 30% of participants did not give consent to commence screening with a PSA test. This lack of consent also correlated with similar findings by Carter (2003), Laws (2003), Gattellari and Ward (2005), and Chapple et al (2008). When there was no consent for a PSA blood test, men in this study were not given the opportunity to weigh up the benefits and harms to make an informed decision before they entered into PCa screening. When a PSA test was abnormal, the next test pursued may lead to a painful and embarrassing TRUS-bx. Men deserve the right to decide for themselves whether they want to pursue PCa screening. They need to know their likelihood of having PCa, and the risk factors and complications associated with further screening, possible treatment, over-diagnosis and over-treatment.
The current longitudinal studies underway are debating such issues as consent, age to commence and cease PCa screening, the PSA level at which to instigate a TRUS-bx, whether or not PCa screening is effective and ought to be performed and various other questions. The limitations of this study prevent further discussion on this topical debate, though a short synopsis is available in Appendix 8.5.1. However, the information concerning this topical debate has highlighted a contentious area of consideration on PCa screening, providing insight into the topic for the researcher (Polit & Beck, 2008).
Due to the continuance of the „cycle of silence‟ that had prevented men from discussing the topic with each other, or observing and questioning what they had 109
seen and heard reported in the media, men were ill prepared to embark on the progression of PCa screening tests. „Communication of information‟ also involved the masculine way in which men started to become aware of the new terminology involved with PCa screening. Oliffe and Thorne (2007) and Oliffe (2006) refer to men‟s preference for the mathematical aspect of their results. Understanding and being more at ease with information stated in numbers or percentages (with which men are more comfortable), was preferable to unfamiliar medical jargon for most men. While the men involved in this study knew very little about PCa screening, once involved, they exhibited similar „masculine behaviour‟ as they learnt to understand the terminology involved, and could recite all of the numbers concerning their PCa screening result, referring to them as their „reading‟. They knew what their PSA was originally and what it went up or down to. They knew how many core biopsies they had and which one was the most painful and toughest to endure.
5.5.2 Tell Me the Truth In this research, there was a unique dialogue between one of the sonographers and the participants in respect to pain.
The participants who had this particular
sonographer all appreciated the honesty and the fact that the sonographer did not „hold back‟ with the facts, as none of the men had realised how painful the TRUS-bx would be. Nurses in the department had known the forthright manner in which the sonographer had delivered the information concerning pain to the patients and had disagreed with this approach, finding it too abrupt and not necessarily appropriate for every man. However, this research shows how greatly respected the sonographer‟s honest approach was; rather than scaring men off it prepared them for the worst.
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While Oliffe and Thorne (2007) discussed trust and respect in relation to information given by doctors, no one mentioned information given by other medical staff. This finding is similar to the literature in that participants appreciated how the information was conveyed, „straightforward and with honesty‟. Oliffe and Thorne (2007) uncovered “genuineness”, “trust” and “respect”, though conversely “authority” and “business-like” also rated a mention in their study.
Uncovering the appreciation of honest information no matter how awful was enlightening in a number of ways. Having gratitude for being told all of the facts showed that men did not care how bad things were going to be as long as they knew all the facts in advance. On the other hand, when the same sonographer told men that if they did not want to go through with the TRUS-bx, now they knew about the pain, they could turn around and go home without having it (none of them did). Men were surprised and confused, especially those who had traveled long distances to have the biopsy performed. The finding concerning honesty showed men‟s need to prepare for the worst and it would seem that when they did it helped men to manage the experience. Participants made these comments earlier in the interview when discussing their experiences and emotion of their TRUS-bx. Therefore, it was quite surprising when later in the interview they stated the opposite in relation to „what they would tell another man‟. Honest information had been so important in helping these men to cope and yet they would not give that to another man. In addition, due to the „code of silence‟ they would only say something to another man if he started the conversation, which gave the „cycle of silence‟ further traction.
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5.5.3 Perpetuating the ‘Cycle of Silence’ While the literature agrees that men do not want to discuss their prostate or screening with another man, none of the studies questioned what men would say if asked. This study has revealed that what men would say is either nothing, downplayed or is in conflict to what occurred, as they preserved their own sense of masculinity. Hence the ongoing perpetuation of the „cycle of silence‟ and lack of information concerning PCa screening that men came to screening with in the first place.
The discovery of what men would say to another man when explaining TRUS-bx was most informative. Men had already stated they knew little about PCa screening, and their aversion to the TRUS-bx before they were asked: “What would you tell another man”? While they had previously stated the pain, fear and emotion they had gone through, what they would say to another man was not the thoughts, feelings and experiences they had shared. There were various possible reasons for this phenomenon. Not wanting others to know about their anal penetration and intimate acts with unfamiliar medical staff, privacy, embarrassment, not wanting others to know they may have cancer and be sick or weak. Other reasons could include: not wanting sad faces and sympathy; men‟s inability to discuss personal, health or intimate genital related issues; not wanting others to think they are not potent and masculine; and a belief there would be a change in the masculinity of their bodies. Alternatively, as one participant said, not wanting to put another man off having PCa screening.
Men need to be urged to recognise that by not talking and discussing their personal issues, they are perpetuating the „cycle of silence‟. The „cycle of silence‟ instigated 112
by men, needs to be exposed for them to realise that by not sharing their knowledge and experiences they are keeping other men in the dark and afraid. This study proved that men can discuss these intimate issues in depth as they expressed them to this (female) researcher, although admittedly that was one-on-one and anonymously. It was not that men could not talk about PCa screening, or that they did not have the words to express their feelings. Therefore, it appears the act of having a personal discussion, face to face with other men, was the perpetuating factor in their silence.
5.6 SUMMARY This chapter outlined the many similarities of this study to the current literature but more importantly the issues that are unique to this research. The significant new knowledge includes the three themes of „Masculine Behaviour‟, „Fear, Shock and Emotion‟ and „Communication of Information”. Within these themes, unique new findings were uncovered, which included men starting to justify the use of anal penetration that made the invasion of their masculinity easier to endure. Different levels of pain associated with TRUS-bx emerged - probe, biopsy and the short-lived post-biopsy pain. Furthermore, there was a discussion of men‟s thoughts on euthanasia, and time and nuisance experienced. Showing men who are preparing not to be a „burden‟ and men who do not have time for illness and become irritated when interrupted from their hobbies. Honesty of information was found to be extremely important which contrasted to the „code of silence‟ and what men would say to another man when explaining TRUS-bx that is not in concordance with what he experienced and not the whole story. Hence, the „cycle of silence‟ intertwined with the three themes. This „cycle‟, perpetuated by the „code of silence‟ and „what I would
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tell another man‟, sat in conflict with „appreciating honesty‟. This culminated in the evidence and reason as to why men knew so little about PCa screening.
This chapter has revealed how the Case Study approach allowed the researcher to go where others could not and offers the reader the opportunity to see the extent of the study through the researcher‟s eyes (Stake, 2000). Chapter Six concludes this research and it includes clinical implications, recommendations from this study, limitations and recommendations for future research topics.
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CHAPTER 6: CONCLUSION 6.1 INTRODUCTION This chapter will draw together the results of the research interviews and discussion in a study synopsis revealing the focal issues for men involved in PCa screening. Clinical implications and recommendations from this study, suggestions for future research topics, and limitations of this study are addressed, before the final summation of this thesis is offered. The literature review revealed a lack of studies surrounding the personal experience of PCa screening. There was little available research based on understanding of men‟s needs during the screening period, nor how it affects men‟s lives. The literature reviewed in Chapter Two revealed that only four lead authors in nine articles have written about the experience of PCa screening. Though these articles all used the qualitative paradigm, none had concentrated specifically on only the PCa screening aspect. This is the first descriptive study, to the researcher‟s knowledge, to investigate the experience of PCa screening from PSA and DRE to TRUS-bx from the men‟s perspective.
It is important that men maintain a sense of control and positivity if they are unfortunate to be moving forward into the treatment phase of PCa. Arrington (2008, p. 299) expressed the importance of this very succinctly with his statement: Perhaps no other disease illustrates the social construction of masculine identity more vividly that prostate cancer, an illness whose common symptoms and treatment effects (for example, erectile dysfunction and incontinence) leave men with a diminished sense of agency over their bodies. This loss of agency reveals the ways in which societal norms regarding appropriate masculine sexual behavior and identity are cultural creations, not biological absolutes.
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To confidently move forward men need to have had a previous experience during the screening phase, on which to base it. Diminishing fear and increasing availability of information during the screening phase may allow men to maintain their sense of masculinity, control and confidence.
6.2 STUDY SYNOPSIS This study sought to bridge the gap of knowledge concerning men‟s experiences while they move through the PCa screening trajectory and in doing so uncovered unmet needs. A qualitative approach and embedded multiple case study allowed the researcher to obtain exclusive descriptive insights from each participant. The results highlight the experiences of men faced with invasive procedures involved in PCa screening. This study‟s original aim and objectives were met when the results led to recommendations that include education and service development.
The theme of masculinity penetrated and overshadowed every aspect of the PCa screening experience for these men. „Masculine behaviour‟ and traits were characteristic examples of how men exhibited being “macho”, homophobia, denial, and lack of knowledge concerning men‟s health issues. These traits were also found to be expressions of masculinity in studies by Mosse (1996), Newman (1997), Taylor et al (1998), Gray et al (2002), Broom (2004), Oliffe (2004a), Wall and Kristjanson (2005), Laws (2006), Oliffe (2006), Smith (2007), Arrington (2008), Maliski et al (2008), and Kelly (2009).
If Smith‟s (2007, p. 23) observation that “the most
emotionally charged delineation of masculinities is between heterosexual and homosexual masculinities” is correct, it may be relevant to the overt displays of
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masculinity, and attempts to hide and deny emotional reactions that the men in this study employed.
Within the three themes of „masculine behaviour‟, „fear, shock and emotion‟ and „communication of information‟ lay the revolving subthemes for the „code of silence‟, „what I would tell another man‟ and the conflict regarding „appreciating honesty‟. When these issues emanated from the findings and merged in the discussion, the „cycle of silence‟ became apparent. This cycle revolves around men‟s embarrassment of invasive tests, fear of homosexual innuendo and pain, reluctance to appear anything less than that defined as being hegemonic masculinity, and lack of information and knowledge. The „cycle of silence‟ perpetuated the lack of information and knowledge that caused men to be fearful and unsure of their own masculinity.
The theme of masculinity, shrouded with the fear of the unknown, was enhanced as the men articulated how they felt when the need for further tests transpired. The demonstration of masculinity they displayed as they described this period of the screening trajectory included disdain of test discussions, rejection of ill health, and denial of reliable information to other men. Yet at the same time, they appreciated the honesty from medical staff concerning pain that afforded them time to prepare for the worst and display stoic bravery. „Fear, shock and emotion‟ were controlled and hidden using hegemonic masculinity and the „code of silence‟ by not telling other men what really happened. Aging and thoughts of death, along with the notion of time wasting and nuisance were raised. While „communication of information‟ revealed men knew very little of PCa screening (and would not disclose details of 117
their own screening experiences) yet they wanted to know all of the facts and the truth for themselves.
6.3 CLINICAL IMPLICATIONS The clinical implications of this study are that the increased knowledge of the PCa screening process from the men‟s perspective will assist health professionals and PCa screening departments to facilitate a better experience and outcome for men. Medical personnel can use communication to allay fears of an intrusive medical procedure and assist in easing the comfort and trust levels of men. The use of jokes and banter has been recognised as making men feel more at ease and relaxed; this could be incorporated into relevant discussions. The complicated psychological and sociological aspects of these issues are acknowledged, and are too vast to discuss in this study. Similarly, it has highlighted that medical staff need to recognise unique masculine traits to allow appropriate support and information to alleviate fears while retaining notions of masculinity. It is pertinent to remember that most Anglo-Saxon, heterosexual men undergo PCa screening in a hegemonic, masculine, stoic manner.
The beginning of PCa screening needs to be the point at which men‟s knowledge of screening methods and the reasons for anal penetration commence. This study found that men appreciated honest information. Prior knowledge and warning can prepare men and give them time to justify what needs to occur. In addition, men need to be aware of where to find further information via various sources remembering that men in remote areas usually have less available reliable resources.
Likewise, the
discovery of the variances in pain throughout the TRUS-bx and the speed with which
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the pain dissipated may be of value to Radiologists and Urologists involved with pain management.
The discovery of the „cycle of silence‟ concerning „what men would say to another man‟, and the „code of silence‟, are the reasons why men knew so little about PCa screening. This is important information for clinicians and those involved in promotion of men‟s health. Clinicians and screening departments need to intercept this „cycle of silence‟ while allowing and encouraging men to speak out, confident that in doing so men will appreciate honest information. Post-TRUS-bx discussions with a nurse or counsellor may assist men to air their feelings about what has happened and the worry of waiting for results or side effects. Discussing their feelings immediately may give men the opportunity to justify the invasion with someone who understands what they have just experienced. Literature concerning local support groups, PCa or men‟s health telephone help- lines, and relevant internet sites may also allow men to speak out anonymously.
6.4 RECOMMENDATIONS FROM THIS STUDY The aim of this study was to determine what it was like to be a man going through PCa screening from DRE and PSA to TRUS-bx to establish the meaning behind the experience. Using a qualitative, multiple embedded case study approach allowed rich descriptive dialogue from the point of view of 10 men‟s voices. When these personal perspectives were combined with demographics and screening data a comprehensive picture of the PCa screening experience emerged. The objectives were to identify what men‟s needs were during the screening process, examine the protocols in relation to those needs and identify further educational and service provision. Based 119
on the feedback from the participants, the protocols delivered in the Radiology Unit fulfilled the needs of men undergoing TRUS-bx. In fact, all of the men stated that they did not believe there was anything else the Radiology Unit could have done for them or improved. They were all satisfied with the service delivered by all staff members they encountered. However, this study has identified further educational and service provision (discussed next) is required to ease the burden on men having PCa screening in this metropolitan Radiology Unit. Other PCa screening departments may have similar needs.
6.4.1 Education Pictures within the literature given to patients would be most beneficial, as many men did not know where the prostate was or why the approach to screening was anal. Pictures would explain the anal approach. The inclusion of pictures or a description of equipment used for TRUS-bx may have the same advantage because anxiety and apprehension over the unknown was high. A picture and explanation of the equipment would alleviate fears of huge pieces of apparatus entering their body. Educational literature could also advise men of the website for the hospital where the Radiology Unit is situated. This website contains „links of interest‟ and one link is to a PCa website linked with Lions Australia Prostate Cancer Collaboration (APCC). Vast amounts of easy to understand credible information in non-technical language is available on this website for those who are on the internet. The procedural information sent out to men prior to their TRUS-bx needs to be amended to conform to these findings. 120
6.4.2 Service Provision The time between making appointments and having the procedure was sometimes so quick that information from the Radiology Unit had not arrived. Therefore, a thorough explanation still needs to be given to men when they arrive at the Radiology Unit prior to their TRUS-bx, as per the normal department protocol. A clarification of the pain involved in having a TRUS-bx is appropriate and in particular, as discovered in this study, the fact that the pain is generally short-lived. The researcher was anecdotally aware of the fact that pain was short-lived from her prior dealings with post-TRUS-bx patients. This study has confirmed that pain goes away quickly; however, the pain of the probe and biopsies is another question and varies from man to man. The discovery of a discrepancy between what nurses told men about pain and what a sonographer stated is worth noting. Men have respected the honest forthright explanation of pain by the sonographer. It would appear that to continue with a protocol that includes an honest description would be invaluable to men who use this knowledge to give them confidence in their ability to tolerate the procedure. Further, an explanation of who will be in the room and justification of their role would be pertinent in assisting men to feel less vulnerable and more in control, therefore preserving their privacy and sense of masculinity.
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6.5 RECOMMENDATIONS FOR FUTURE RESEARCH Transfer this study design to other sites to capture the lived experience of PCa screening of men from different culture, marital status, sexual preferences and regions. Also men who are marginalised or disabled. Participants stated they were glad they were not homosexual, assuming the act of anal penetration would not bother homosexual men. While anal penetration is symbolic of the homosexual sex act, when performed as part of medical testing for cancer it is presumably as distressing an experience for all men no matter what their sexual preference. Interviewing homosexual men may prove an insightful addition to PCa screening knowledge. A follow-on study with the participants in this study could look at men‟s perspective of masculinity pre- and post-PCa diagnosis. There may be identifiable changes to the masculine approach that can only occur when living becomes the focus. Revisiting these men could also focus on their wives‟ points of view concerning how their husbands reacted to PCa screening and diagnosis if their results were positive. There were two sets of twins in this study (only one twin from each pair was a participant). Observing such a close familial connection may be beneficial in identifying men‟s experiences, needs and patterns of coping. Two men had been screening for many years; that situation ignited thoughts of the psychological impact and implications of such long-term screening. Being a female researcher has made the researcher wonder what women know about PCa screening. There is much documentation on partners urging
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men to commence PCa screening, so why does that occur and what are these women basing their knowledge and insistence of screening on?
6.6 LIMITATIONS There are a number of limitations to this study. Firstly, all of the participants were white Australians with 50% being Europeans by origin. Therefore, the participants were not an extensive cultural mix of men for experiences of PCa screening. Participants from a more diverse cultural background, from minority groups or those with disability needs may have added different input to the themes created in this research.
Secondly, all of the men were heterosexual and married. The views of single heterosexual men should show some differences as stated earlier, and most men commenced PCa screening after prompting by their wives. Who prompts single men? Likewise, homosexual men may have added further diverse findings, partnered or single.
Thirdly, while it was pre-organised that the same staff (nurse, sonographer and radiologist) would perform the TRUS-bxs for the research participants this outcome did not eventuate. Staffing difficulties, sickness and holiday leave, extent of workload on the day and variation and spread of the research participants, intervened. This variance resulted in three different radiologists and sonographers and four different nurses performing the TRUS-bxs. Ideally, the same staff for each
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man would have resulted in equivalent treatment and confirmation that any difference between participants was from the men and not the medical staff.
While other studies mentioned the profession of their participants all the men in this study were retired and not asked about their previous work life. Asking this question may have shown educational and information absorption levels that were unknown in this cohort. Finally, one man, while discussing sexuality, briefly mentioned that it was difficult talking to a „young woman‟ about these issues, though he continued to do so. While it appeared at the time that the participants were having few difficulties in being open, a male researcher may have had different responses. However, the researcher has found that being a nurse has resulted in patients of both sexes being open and able to speak in-depth about their personal issues, as the public tend to view nurses as people to be trusted.
6.7 SUMMARY The lack of qualitative research involving the descriptive experiences of men going through PCa screening reinforced the need for this study which extrapolated men‟s needs in terms of masculinity, fear and information. The findings of this study add unique insight into PCa screening and have bridged the gap of knowledge where little was known concerning men‟s experiences. Considering the flood of men from the „baby boomer‟ generation who are now entering the sphere of PCa screening, it is vital that the lack of knowledge and understanding concerning men‟s feelings going through PCa screening is emphasised. In doing so the medical profession can more aptly assist these men to maintain their sense of masculinity, help to alleviate and 124
resolve their fears, and deal with their information needs concerning this very sensitive screening process more appropriately.
A comparison between the original aim and objectives of Chapter One and the findings of this study emerged which identified the need for enhanced educational material and information that are the recommendations of this study. There has been acknowledgement of study limitations, though it is doubtful that they would have changed the distinctive differences in the findings of this study.
The focal issues resulting from this study are that men undergoing PCa screening do so in the most masculine, stoic manner, hiding their emotions and fearing the unknown. In doing so, men have created a „cycle of silence‟, which perpetuated their lack of information and cultivated the premise that withholding knowledge and experiences from others was appropriate. This silence is undermining men‟s access to vital information that would allow them to proceed through PCa screening without such grave fears while holding onto their sense of masculinity without the fear of embarrassment or shame.
By interpreting the meaning behind participants‟ descriptions, this study has resulted in a deeper understanding of men‟s experience of PCa screening. Therefore, it enhances the profile of PCa screening by providing a new awareness of men‟s sense of masculinity, fears and information needs during PCa screening. It is hoped that by so doing, this study has given a voice where there was previously a „cycle of silence‟ concerning issues relating to PCa screening.
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8.0 APPENDIX INDEX 8.1 CHAPTER 1 INTRODUCTION & BACKGROUND ON PCA.. 135 8.1.1 Diagram of DRE .................................................................................. 135 8.1.2 Diagram of the prostate gland insitu ................................................... 135 8.1.3 Diagram of TRUS-bx .......................................................................... 136 8.1.4 Diagram of normal and cancerous prostate glands ............................. 136 8.1.5 Flow chart for early diagnosis of PCa ................................................. 137 8.1.6 Age-Specific Reference Ranges for Serum PSA ................................ 138 8.1.7 Useful Internet Resources ................................................................... 138 8.1.87 PCa Staging & Post-Treatment Assessment & Management ........... 139
8.2 CHAPTER 2 LITERATURE REVIEW ...................................... 140 8.2.1 Table of Data Base Search Results & Decision Tail ........................... 140 8.2.2 Flow Chart of Empirical Search Results ............................................. 141 8.2.3 Matrix of Included Qualitative Research Studies ................................ 142 8.2.4 Critical Review Guidelines for Qualitative Studies ............................ 150 8.2.5. Critical Appraisal of Included Articles .............................................. 152 8.2.6 Analysis of Critical Appraisal of Included Articles ............................ 154 8.2.7 Table of Three Ethnographic Studies by Oliffe 2004-2006 ................ 155 8.2.8 Table of Themes & Sub-Themes of Findings from Reviewed Studies including Empirical Sources ........................................................................ 156
8.3 CHAPTER 3 METHODOLOGY ................................................ 156 8.3.1 Nursing, And Department Letters of Support ..................................... 157 8.3.2 Research Project Indemnity................................................................. 158 8.3.3 Ethical Committee Approval ............................................................... 159 8.3.4 Participants Information Sheet ............................................................ 160 8.3.5 Chairman‟s Letter ................................................................................ 161 8.3.6 Letter of Introduction .......................................................................... 162 8.3.7 Informed Consent ................................................................................ 163 8.3.8 Semi-Structured, Open-Ended Interview Question Guide .................. 164 8.3.9 Thematic Data Analysis ...................................................................... 166 8.3.10 Development and Collapsing of Themes .......................................... 167 8.3.11 Criteria for Research „Trustworthiness‟. ........................................... 168
8.4 CHAPTER 4 FINDINGS ............................................................. 169 Table 8.4.1 Individual participant demographics for screening and TRUS-bx results............................................................................................................ 169
8.5 ADDENDUM .............................................................................. 170 8.5.1 PCa Screening Topics under Debate ................................................... 170 8.5.2 Prostate Cancer Screening With PSA Recommendations ................... 174 8.5.3 Ongoing Prostate Cancer Screening Trials & Recommendations ....... 175
8.6 ILLUSTRATIONS ........................................................... 176 8.7 FOR WHOM THE BELL TOLLS...................................178
134
8.1 CHAPTER 1 INTRODUCTION & BACKGROUND ON PCa 8.1.1 Diagram of DRE
8.1.2 Diagram of the prostate gland insitu
135
8.1.3 Diagram of TRUS-bx
8.1.4 Diagram of normal and cancerous prostate glands
136
8.1.5 Flow chart for early diagnosis of PCa
(Green et al 2009)
137
8.1.6 Age-Specific Reference Ranges for Serum PSA Age range
Asian-Americans
African-Americans
Whites
40-49 yr
0-2.0 ng/ml
0-2.0 ng/ml
0-2.5 ng/ml
50-59 yr 60-69 yr
0-3.0 ng/ml 0-4.0 ng/ml
0-4.0 ng/ml 0-4.5 ng/ml
0-3.5 ng/ml 0-4.5 ng/ml
70-70 yr
0-5.0 ng/ml
0-5.5 ng/ml
0-6.5 ng/ml
(Green et al 2009)
8.1.7 Useful Internet Resources Prostate Cancer Foundation of Australia http://www.prostate.org.au Andrology Australia website http://www.andrologyaustalia.org Fingertip Urology at http://www.bjui.org/FingertipUrology.aspx Lions Australian Prostate Cancer website http://www.protatehealth.org.au/ The Early Detection Of Prostate Cancer in General Practice: Supporting Patient Choice. Available from; http://www.andrologyaustralia.org/docs/PSAdecisioncard20041007.pdf PSA Rising http://www.psa-rising.com
138
8.1.8 PCa Staging & Post-Treatment Assessment & Management
(Green et al 2009)
139
8.2 CHAPTER 2 LITERATURE REVIEW 8.2.1 Table of Data Base Search Results & Decision Trail
CINAHL Found Abstract read Full text read 2nd read No. found Medline Found Abstract read Full text read 2nd read No. found PsychInfo Found Abstract read Full text read 2nd read No. found Informit Found Abstract read Full text read 2nd read No. found
Search 1 QOL
Search 2 Prostate
Search 3 DRE
Search 4 Men‟s health
Search 5 PCa Screening
Search 6 Qualitative Research
Search 7 Anxiety & Illness
Search 8 TRUS-bx
Search 9 PSA
Search 10 PCa & Sexuality
Search 11 Gender Role
1 0 0 0 0
43 5 3 1 0
9 0 0 0 0
4 2 2 1 1
45 10 4 0 0
177 2 1 0 0
11 0 0 0 0
20 3 3 2 2
39 14 2 2 0
1 1 1 1 1
6 1 1 1 0
5 2 1 0 0
1 0 0 0 0
1 0 0 0 0
4 2 1 1 0
35 7 1 1 0
1 0 0 0 0
15 7 4 0 0
3 2 0 0 0
0 0 0 0 0
13 9 5 0 0
96 30 13 3 0
34 5 1 1 0
6 2 0 0 0
4 0 0 0 0
0 0 0 0 0
1 1 1 1 0
0 0 0 0 0
9 1 1 1 1
9 4 2 2 2
42 22 7 2 2
42 8 4 3 0
12 1 0 0 0
3 1 1 0 0
0 0 0 0 0
0 0 0 0 0
1 0 0 0 0
0 0 0 0 0
0 0 0 0 0
0 0 0 0 0
0 0 0 0 0
0 0 0 0 0
26 12 6 1 0
30 13 7 1 0
140
8.2.2 Flow Chart of Empirical Search Results
Potentially relevant articles identified and screened (titles & key words) N=695 articles Excluded N= 541 Articles retrieved for more detailed screening (abstracts) N= 154
Excluded N =87
Partial/skim full read N = 67 Excluded N = 30 Full articles read & re-read N = 37 Excluded N = 28 Articles included thematic review n = in 646 N=9 N=9 Adapted from (Heaney et al. 2006)
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8.2.3 Matrix of Included Qualitative Research Studies Author(s)Year-Aim 2008 Chapple A, Ziebland, S, Hewitson, P McPherson, A 3x researcher 1x GP UK Aiminvestigate explanations for the lack of change in men‟s accounts of PSA testing.
Participants
Methodology
Major Findings
Limitations
Strengths
N=30 men, 4men recruited through PCSG, 1 via Urologist, 7 from panel member or personal contact, 18 from GP.
Qual. Inductive Interview 1-2 hrs. Thematic analysis & Constant comparison. Extension of earlier Study (2000) of views Of men with PCa by exploring their views since the introduction of the PCRMP (change in policy) to explore explanations for remarkable consistent results.
After intro of PCRMP men still view PSA as responsible health behavior, it is seen as „just a blood test‟, shows lack of clear communication regarding its outcomes. Though men were given info on PSA, they did not have uncertainty of screening & treatment explained. 3 men did know, they were Dr.s who decided against the test. Despite the policy change men are still unclear re PSA & are unprepared for adverse events. Most men still get tested. Community awareness of screening for women, but not for men & that blood tests are mundane & are reported in low key manner.
Some prior discussions of PSA with Dr. wife or other unknown, also way in which info was give or emphasized is unknown. 29 white men & 1 black Caribbean, does not seem like a good cultural mix from a society that is as multicultural as the UK. Mostly they had professional occupations with 3 Drs.
Follow up on previous study which was prior to the intro of PCRMP policy change. Picks up on current popular debates. Awareness of speech patterns throughout the interview, & assigning meaning to the use of language.
142
Author(s)-Year Aim 2007 Chapple, A, Ziebland, S, McPherson, A, 1x researcher, 1x GP, 1x Urologist UK Aim-Explore men‟s experiences of TRUS-bx.
Participants N=50 men who had Pbx. 36 in 2000 re all aspects of PCa. 14 in 2005 PSA & subsequent investigations & treatment. Recruitment via Urologist, GP, & PCSG.
Methodology
Major Findings
Limitations
Strengths
Qual-Interpretive. Interview 1-3 hrs. Thematic analysis with constant comparison. NUD*IST , QSR N5 (part of a wider study this part on before during & after TRUS-bx.
Pt satisfaction increased when sedation used. Men who are more poorly informed felt more anxious. Many men found it an ordeal, Pbx can cause physical & emotional toll. Some men found introduction of the probe more painful than the Pbx, even with anaesthetic. Dislike of anal penetration due to dominant heterosexuality & homophobic fears. Men from different cultures may feel more or less embarrassed by the Pbx experience. Some men would like to have seen what was going on.
Interview were some time after Pbx, men may have forgotten detail of procedure. Lack of manual workers, ethnic minority groups, as different cultures represent pain in different ways. Above the article it says „case study‟ yet there is no mention of it within the article.
Rich descriptive text. Interviews in 2000 & in 2005 are remarkably similar re anxiety & pain.
143
Author(s)Year- Aim 2007 Oliffe, J & Thorne, S Both RN‟s Canada & Australia Aim- to understand PCa pts communica tion with male physicians in respect to how it is informed & influenced by masculinity
Participants N-52 men. 19 Canadian & 33 Australian . PCa survivors who were treated by a male GP & PCa specialist.
Methodology
Major Findings
Limitations
Strengths
Qual-Interpretive, secondary analysis from 2 studies. 199498. Interviews. Themes of masculinity & Ptphysician communication were strongly evident in a previous study. Canadian study-pt experience of helpful & unhelpful Ca communication. Australian studydescribed connection of masculinity & men‟s experience of PCa & illness.
Men‟s trust in Dr‟s was underpinned by compassion & respect for expertise. Men were reassured by the use of humour. Men were keen to learn about PCa themselves, they researched the disease & used the medical/scientific language. Shows men‟s expectations of definitive results from tests, ambiguity concerning screening, experiences was not congruent with explanations from Drs., who simplified outcomes in terms of „odds‟. Pt-GP interactions seen as business like, Pt appreciate decisive, skilled, trustworthy Drs. Humour used as a strategy to alleviate anxiety & seen as being a normal bloke & buffer against vulnerability before another man as opposed to power imbalances of Pt v Dr & conceded authority. Time & information with specialist was source of communication concerns. Men needed time to process the info given before making decisions. Men reacted quickly with treatments. Men‟s ability to explain their (gender) communication needs.
5 men from the original study were used for member checks, the article does not say where they were from, Canada or Australia, so which experience they were interviewed about. Study shows one side of the pt-Dr communication. Does not say how participants were recruited in the original study.
Presented to PCSG‟s in Canada, and 2 cancer specialist from each country for feedback. Research by nurses, makes it similar to mine.
144
Author(s)Year-Aim 2006 Oliffe, J, RN, PhD, University of British Columbia. Study in Melbourne Australia Aim-To describe pts perspective of PCa screening & diagnosis of PCa.
Participants
Methodology
Major Findings
Limitations
N=35. 12 from PCSG & 23 men who had not attended PCSG from adverts. In news paper. preliminary field work in 2 PCSG‟s in Melbourne for 6 mnths. 34 of the 35 men had TRUS-bx & diagnosed with PCa 1994-2001. Purposeful sample.
QualEthnography. Interviews 2 hrs. Participant observation. Spouse included. Member checks. Preliminary fieldwork at 2 PCSG‟s for 6 mnths. Themes„pre screening‟, „screening‟, „abnormal results‟, „PCa diagnosis‟.
Men had no understanding of PSA or what abnormal results meant. Some agreed to have a PSA but had no ideas what it was. All accepted GP‟s referral to a specialist. Compelled to know if they had PCa . Shock & realization of mortality was strong. Most considered active treatment to be urgent. Rapid sequence of events following PCa screening with abnormal results. (Screening continuum) Men unaware that 3 tests required to diagnose. PSA preferred to DRE (invasive & embarrassing). PSA was over simplified as a method of screening. PSA seen as being convenient. When DRE & PSA results were positive, little time to think before TRUS-bx. Unwittingly committed to TRUS once other tests were positive. Specialists recommended treatments they deliver.
3 men had already had PSA so knew of the implications. Participants reliance on memory. Benefit of hindsight. Is this the same study as the Oliffe, J, 2004. Ethnography, using 14 men in Melbourne Australia, where the themes are similarly worded as „pre TRUS-bx‟ „TRUS-bx‟ „post TRUSbx‟. Similar findings, invasive , compelled to find out, & shock when results were positive.
Strengths
Rich text. Common male health behaviour avoidance, need of female partner, & only investigate symptoms, was replicated.
145
Author(s)Y ear- Aim 2004b Oliffe, J. RN, PhD. Australia Aim-To describe TRUS-bx from the pts. perspective
Participants
Methodology
Major Findings
Limitations
Strengths
N=30 men post TRUSbx without anaesthetic 1994-2001 & were diagnosed with PCa. 12 from PCSG, 18 from newspaper advert.
Qual.- Ethnography. Interview average 1 hr. Participant observation. Member checks. Themes„Leading up to TRUSbx‟, „TRUS-bx‟, „TRUS-bx procedure‟. Patterns- „anxious uncertainty‟ „anal penetration‟ „needling pain‟ & „painless expectations‟.
PSA & DRE seen by all as precaution not anticipating Ca. All men anxious uncertain, waiting 3 wks to 6 mnths. Fear of Pbx process, body as public, loss of control, embarrassing, painful, stoic, passive role, degrading, vulnerable, surprise at pain disparity from what they were told by DR. Lack of pain reporting, unfamiliar Dr. All men recall penetrative aspect. Memory of the pain can remain for many years, relates to life changing diagnosis. Reality of pain confounded by stoicism, which may encourage the continuation of Pbx without anaesthetic.
Lack of other cultures. May represent pain differently. Study show men had pain & it had been underplayed to them, the study didn‟t state what men had been told. What was the gap between education & reality? A bit light on men‟s descriptions, leading to a short paper for the subject.
Results of this study given to 150 men in 4 PCSG‟s who agreed with the comments made in this study. Member checks, focus group & observation
146
Author(s)-Year Aim 2004a Oliffe, J. RN, PhD. Australia Aim-To investigate participants experiences of TRUS-bx
Author(s)-Year Aim 2004 Broom, A Australia Aim-examines the relationship between masculinity & men‟s experiences of PCa
Participants
Methodology
N=14 AngloAustralian men experiencing TRUS-bx without anaesthetic 1997-2001. 7 from PCSG, 7 by newspaper advert, purposeful sample.
Qual.- Micro ethnography. Social constructionist gender analysis framework. Interviews-90 mins. Participant observation. Member checks. Preliminary fieldwork at 2 PCSG‟s for 6 months. Themes- „pre TRUSbx‟ „TRUS-bx‟ „post TRUS-bx‟ Methodology
Transition from well man to a man to man with Ca was a Quant. Journey of DRE &PSA. Espoused inaccuracy of tests gave men hope that a mistake had been made. Anxiety, uncertainty & fear pre Pbx undermined masculinity though publicly they showed control, stoic & rational behaviour. Urgency for Pbx Varied though all were compelled to find out results. These steps were seen as logical rationale to diagnose & treat PCa. Pbx was invasion of privacy, embarrassing, demeaning, varied pain, traumatic, sound of gun, unfamiliar Cr, inaccuracy of GP‟s prediction of pain, shameful & viewed as passive, feminine & receptive. Pbx results were an emotional time, men were shocked when faced with their own mortality.
Time between screening & interview could lead to inaccurate memory of events and feelings; this may also change with the addition of hindsight.
Major Findings
Limitations
Qual-Interpretive. Indepth interviews 1-2 hrs. Constant comparison.
PCa screening affects sense of masculinity, „shame‟ „code of silence‟ „macho‟ „strong‟. Illness seen as weakness. Unknown knowledge of body & prostate. No education @ school, not discussed with other men. Investigation & diagnosis embarrassment, humiliation, painful, terrible, don‟t tell anyone not friends or family. Heterosexual vs. homoeroticism. For some, risks of death outweighed risks of impotence & incontinence. Potency& lifestyle over cure. Treatments chosen based on ideal version of masculinity. Treatment side effects not explained.
Participants N=33 Australian men with PCa, 25 from PCSG, 8 from magazine advert.
Major Findings
Limitations
Only 37%of men approached, took part. Indicative of wider issue addressed in the study re masculine ideals & tendency for men not to discuss their health.
147
Author(s)-Year-Aim 2002 Gray, R, Fitch, M, Fergus, K, Mykholovski, E & Church, K. Canada Aim-To identify linkages between masculinity & PCa
Participants
Methodology
Major Findings
Limitations
Strengths
N=3 theoretical sample. Men who showed traits of hegemonic masculinity & were open in interviews, who were also part of a larger study linking PCa & masculinity which has 18 men, 1 year post diagnosis, including white , black & gay men. From adverts, GP, urologists.
Qual (2yr) Narrative approach. Interview prior to & following PCa diagnosis. Total of 4-5 interviews per man to describe their PCa experience, their life prior to PCa & links between Pre PCa life & post PCa life.
Didn‟t know of prostate, PSA , Pbx. Treated whole ordeal like business transaction, denial of personal aspect, help, hid things, sexual & continence issues high priority, loss of control, sign of weakness. Main support-female partner though problematic, viewed a s weak. Sexual issues, unable to live up to own sense of masculinity depending on pre PCa performance of masculinity. Unwilling to share with other men as to intimate nature, embarrassment, loss of control, humiliation vs. competitive, masculinity. Vaguely willing to talk to others or PCSG. Post, men don‟t fuss over their body or seek help, seen as feminine though when faced with illness, lifestyle changes enacted. PCa seen as gateway to old age & deterioration of body, renegotiation of masculine performance, not substantively transformed from societal expectations of hegemonic masculinity.
These 3 men were chosen because of how forthcoming they were in initial interviews, Are men who are able to talk about their experiences in that way already showing a different form of masculinity? Are men who are unable to be so forthcoming suffering in silence in different ways?
Part of a larger study. Rich descriptive text of masculinity viewed by men. Number of interviews to capture this narrative, over time.
148
Author(s)-Year Aim 2000 Gray, R, Fitch, M Phillips, C Labrececque, M, & Fergus, K, Canada Aim-Explore issues of support & coping for couples where the man had been diagnosed with PCa
Participants
Methodology
Major Findings
N=34 men with PCa & their spouses from 16 Urologists, all chose prostatecto my.
Qual-Grounded theory. 45-90 minute interviews at 3 pointsprior to surgery, 8-10 wks post surgery & 11-13 wks post surgery. Interviews conducted separately & simultaneously. All men had chosen prostatectomy treatment. Constant comparison. In respect to „managing the impact of illness‟- 5 themes-dealing with practicality, stopping illness interfering with life, keeping relationships working , managing feelings & making sense of it.
Few sought tests, part of medical check. Diagnosis came as a shock with couples crying with sense of fear & panic. Men tended to withdraw for a while to come to terms with their emotions & illness. Lack of information from Dr. Diagnosis sparked information gathering “knowledge is power‟, looking to men with PCa for info. PCSG‟s though for some info was overwhelming. Men needed specialists they could trust. Couples were mostly ill prepared for post surgery complications including incontinence & help with ED, found it difficult to make time in their lives for PCa, parameters on how many people knew about their PCa, men avoided the discussion only wanting to talk to spouse about it, looked for distraction from preoccupation of illness, working as a team bringing closeness to the couple, social interactions preserved by not disclosing PCa which kept things „normal‟.
Limitations
Strengths
No actual description of how it felt to have the screening tests. This article is more about dealing with the positive results and treatment only contains a limited amount of PCa screening.
Good coverage of all the many emotions and adaptation that a couple would go through when under the stress of such an illness.
149
8.2.4 Critical Review Guidelines for Qualitative Studies (to be read down then across two pages)
Title and abstract
Participants
1 Is the title of the research paper congruent with the text? 2 Were the aims and/or objectives stated? 3 Did the abstract contain sufficient info about the stages of the research process (aims, research approach, participants, data collection, data analysis, findings)
1 How were the participants and setting selected (sample strategy). 2 Was confidentiality of the participants assured? 3 Was the anonymity of participants assured? 4 Were ethical issues were indentified in the study? 5 Were the ethical issues addressed?
Identify the phenomenon
Describing the findings
1 Is the phenomenon focused on human experience within a natural setting? 2 Is the phenomenon relevant to nursing, midwifery and/or health?
1 Does the researcher demonstrate to the reader the method (audit trail) by which the data were analysed? 2 Does the researcher indicate how the findings are related to theory? 3 Is there a link between the findings to existing theory or literature, or is a new theory generated?
Structuring the study
Data Analysis
1 Is it clear that the selected participants are living the phenomenon of interest? 2 Is published literature used? 3 Does the question identify the context (participant/group/place) of the method to be followed? 4 Is the theoretical framework clearly stated? 5 Does the theoretical framework fit the research question? 6 Is the method of data collection and analysis clearly specified?
1 Were the data analysed? 2 Is the analysis technique congruent with the research question? 3 Is there evidence that the researcher‟s interpretation captured the participants meaning? 4 Did the researcher say how the criteria for judging the scientific rigour of the study were maintained in terms of credibility, auditability, fittingness and confirmability?
150
6
Does the qual method of data collection chose fit the research question? 8 Are the limitations of the study stated? Research question and design
Researcher’s perspective
1 Was the research question determined by the need for the study? Was this determination made? 2 Are the data collection strategies appropriate for the research question? 3 Do the data collection strategies reflect the purpose and theoretical framework of the study? 4 Can the data analysis strategy be identified and logically followed?
1 Are the biases of the researcher reported? 2 Are the limitations of the study acknowledged? 3 Are recommendations suggested for further research? 4 Are implications for healthcare mentioned?
Adapted from Schnieder et al (2007).
151
8.2.5. Critical Appraisal of Included Articles
Title & abstract Q1 Q2 Q3 Phenomenon Q1 Q2 Structure Q1 Q2 Q3 Q4 Q5 Q6 Q7 Q8 Question & Design Q1 Q2 Q3 Q4
Chapple et al 2008
Chapple et al 2007
Oliffe & Thorne 2007
Oliffe 2006
Oliffe 2004b
Oliffe 2004a
Broom 2004
Gray et al 2002
Gray et al 200
Score
1 1 1
1 1 1
1 1 1
1 1 1
1 1 0
1 1 1
1 1 1
1 1 0
1 1 0
9 9 6
1 1
1 1
1 1
1 1
1 1
1 1
1 1
1 1
1 1
9 9 100%
1 1 1 1 1 1 1 1
1 1 1 1 1 1 1 1
1 1 1 1 1 1 1 1
1 1 1 1 1 1 1 0
1 1 1 1 1 1 1 0
1 1 1 1 1 1 1 0
1 1 1 1 1 1 1 0
1 1 1 1 1 1 1 1
1 1 1 1 0 0 1 1
9 9 9 9 8 8 9 5
1 1 1 1
1 1 1 1
1 1 1 1
1 1 1 1
1 1 1 1
1 1 1 1
1 1 1 1
1 1 1 1
1 1 1 1
9 9 9 9 100%
89%
92%
152
Participants Q1 Q2 Q3 Q4 Q5 Data Analyses Q1 Q2 Q3 Q4 Findings Q1 Q2 Q3 Researcher‟s Perspe-ctive Q1 Q2 Q3 Q4 Score = total no. of Yes
1 0 0 1 1
1 0 0 1 1
1 1 1 0 0
1 1 1 0 0
1 1 1 0 0
1 1 1 1 1
1 0 0 0 0
1 1 0 0 0
1 0 0 0 0
9 5 4 3 3
53%
1 1 1 0
1 1 1 0
1 1 1 1
1 1 1 1
1 1 1 1
1 1 1 1
1 1 1 0
1 1 1 0
1 1 1 1
9 9 9 5
89%
1 1 1
0 1 1
1 1 1
1 1 1
1 1 1
1 1 1
1 1 1
1 1 1
1 0 1
8 8 9
93%
1 1 1 1
0 1 1 1
1 1 1 1
1 1 1 1
1 0 1 1
1 0 1 1
0 0 1 1
1 0 0 1
0 1 0 1
6 5 7 9
75%
30
28
31
30
28
31
25
26
23
252
(Schnieder et al, 2007, p. 273)
Key- 1 = adequately addressed or included 0 = not addressed or included
153
8.2.6 Analysis of Critical Appraisal of Included Articles Articles in Order of Strengths When Using Critical Guidelines Authors
Critical Appraisal
Oliffe & Thorne 2007, Oliffe 2004a
31
Chapple et al 2008, Oliffe 2006
30
Chapple et al 2007, Oliffe 2004b
28
Gray et al 2002
26
Broom 2004
25
Gray et al 2000
23
____________________________________________________________________ Eight Critical Appraisal Criteria in Order of Strengths
Phenomena, Question and Design
100%
Findings
93%
Structure
92%
Title & Abstract, Data Analysis
89%
Researcher‟s Perspective
75%
Participants
53%
154
8.2.7 Table of Three Ethnographic Studies by Oliffe 2004-2006
Author
Participants
Methodology
Major findings
Oliffe (RN N=35 post TRUS-bx PhD) 2006 1994-2001. 12 from PCSG 23 by newspaper
Ethnography, 2 hr interviews. Preliminary fieldwork at 2 PCSG‟s for 6 months Oliffe (RN N=14 post TRUS-bx Micro ethnography, PhD) 2004a 1997-2001. 7 from 90 min. interviews. PCSG‟s, 7 by Preliminary fieldwork newspaper at 2 PCSG‟s for 6 months Oliffe (RN N=30 post TRUS-bx Ethnography, PhD) 2004b 1994-2001. 12 from interviews PCSG‟s, 18 by newspaper
1
Thematic framework
Describe experience of being screened and subsequent diagnosis with PCa.
4 Themes-prescreen: screening reasons, Screen: preferences & patterns, Abnormal results: the whiff of bedlam, Post cancer diagnosis, shock & treatment Investigate men‟s 3Themes- Pre TRUS-bx: anxiety, experience of TRUS- TRUS-bx: penetration, pain & bx using social stoicism, Post TRUS-bx: mortality constructionist gender framework
hr Describe experience 2 Themes- Leading up to TRUS-bx: of TRUS-bx without anxious uncertainty, TRUS-bx anaesthesia. Procedure: anal penetration, needling pain, painless expectations.
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8.2.8 Table of Themes & Sub-Themes of Findings from Reviewed Studies including Empirical Sources.
Theme 1- Prostate Cancer Screening DRE
Empirical Source 3
Oliffe(2004b & 2006), Broom (2004)
PSA
4 Oliffe (2006), Oliffe & Thorne (2007), Chapple et al (2008), Gray et al (2000)
TRUS-bx
5
Theme 2 – Feelings & Emotions
Oliffe (2004a, 2004b & 2006) Broom (2004) Chapple et al (2007) Empirical Source
Sexuality & Anal Penetration 5 Gray et al (2002), Broom (2004), Oliffe (2004a, & 2004b), Chapple et al (2007) Embarrassment Anxiety & Fear
4
Broom (2004), Oliffe (2004a & 2004b), Chapple et al (2007)
Pain
3
Oliffe (2004a & 2004b), Chapple et al (2007)
Theme 3 – Variations of Masculinity Masculinity, and Masculine Behaviour
Empirical Source 4
Gray et al (2002), Oliffe (2004a), Broom (2004), Chapple et al (2007),
Male communication
1
Gray et al (2000)
Code of silence Theme 4 – Coping with Information Information, Knowledge & Research
3
Gray et al (2000 & 2002), Broom (2004) Empirical Source
Facing Illness Theme 5 – Interactions with Doctors & Specialists.
7
Gray et al (2000 & 2002), Broom (2004), Oliffe (2006), Oliffe & Thorne (2007), Chapple et al (2008), Chapple et al (2007),
4
Gray et al ( 2000 & 2002), Oliffe (2004a & 2006) Empirical Source
3
Gray et al (2000), Oliffe & Thorne (2007), Chapple et al (2007)
These empirical sources related to each sub-theme are the „major‟ empirical sources; other studies may have mentioned the sub-theme in a minor way and are therefore not included in this table. However, it does not reduce the importance of the minor sub-theme references within the analysis process. 156
8.3 CHAPTER 3 METHODOLOGY 8.3.1 Nursing, And Department Letters of Support 24 July 2009 The Chairman Research & Ethics Committee Repatriation General Hospital DAW PARK SA 5041 Dear Craig Re: Research Proposal: An Exploration of Men’s Experiences during the waiting period between PSA and Prostate Biopsy Results. A Case Study in a Metropolitan Radiology Unit Please accept this letter as indication of support for the research proposal by RN Susan Heyes BNg for a study entitled: “An Exploration of Men‟s Experiences during the waiting period between PSA and Prostate Biopsy Results. A Case Study in a Metropolitan Radiology Unit.” Susan is undertaking this research as part of her Honours studies through Flinders University, Adelaide, South Australia. Outcomes of the study will be of interest to development in nursing practice. Yours faithfully Lesley Jeffers Acting Director of Nursing & Patient Services 7/9/2009 Radiology Manager Radiology Department Repatriation General Hospital Daws Road, S.A. 5041 Re: Research Proposal Dear Craig, I am writing to indicate my support of Susan Heyes‟s research “An Exploration of Men‟s Experiences During the Waiting Period Between PSA and Prostate Biopsy Results. A Case Study in a Metropolitan Radiology Unit.” Susan is undertaking this research as part of an Honours Programme at Flinders University, Adelaide, S.A. This study will add knowledge to the area of prostate cancer screening, and highlight the needs of men during that period. Yours sincerely, Con Kapsis Radiology Manager, Repat Radiology
157
8.3.2 Research Project Indemnity
158
8.3.3 Ethical Committee Approval Dear Susan Heyes This is a formal correspondence from the Flinders Clinical Research Ethics Committee, which is a properly constituted HREC under AHEC requirements with the registration number EC00188. This committee operates in accordance with the “National Statement on Ethical Conduct in Human Research.” This department only uses email correspondence for all documents unless prior arrangements have been made with the manager. No hard copy correspondence will be issued. Application Number: 41/09 Title: An Exploration of Men‟s Experiences during the waiting period between PSA and Prostate Biopsy Results: A Case Study in a Metropolitan Radiology Unit. Chief investigator: Susan Heyes The Issue: The Flinders Clinical Research Ethics Committee (FCREC) and their subcommittee the Clinical Drug Trials Committee (CDTC) have reviewed and approved the above application. Your project may now commence. The approval extends to the following documents: General Research Application Participant Information Sheet, Version 2 Consent Form, Version 2 Privacy Statement for Research Protocols, dated 27 July 2009 Application to Register a New Database, dated 28 July 2009 Out-line for open-ended interview guide Letter from Craig Whitehead to potential participants Support from Acting Director of Nursing and Patient Services, dated 24 July 2009 Indemnity from John Markic, dated 6 July 2009 Response to Committee Concerns, dated 16 September 2009 Approval Period: 12 October 2009 to 12 October 2012 Please retain a copy of this approval for your records. Tamara Rusby Executive Officer for the Southern Adelaide Health Service Flinders Clinical Research Ethics Committee Human Research and Ethics Department Southern Adelaide Health Service Room 2A 221 Flinders Medical Centre Bedford Park SA 5042 T: 08 8204 4507 or Fax: 8204 4586 Email:
[email protected] Website: http://www.flinders.sa.gov.au/research/pages/ethics
159
8.3.4 Participants Information Sheet Participant Information Sheet Project Title: “An Exploration of Men‟s Experience, of Being Screened for Prostate Cancer.”
Thank you for your time taken to read this information. You are being invited to take part in a research study, which aims to explore men‟s experiences of being screened for prostate cancer. It will uncover the educational and information needs required by men during the time of screening, and also analyse the service provided. The information that you give us will be of great value in determining future improvements to resources and services, and therefore improve the experience for other men. The study will require you to have an interview with the researcher about your experience from the time you first started being screened for prostate cancer, to the current time. This interview will take place at a time and place convenient to you, and will take one hour. The interview will be tape recorded, so that the researcher can transcribe your exact words. If you choose to participate, you will be asked to sign a written consent form. You will remain completely anonymous, and will be given a false name for the study. Your information will be combined with many others during the analysis of the data, so you will remain unidentifiable. All information in regard to this study will be kept secure and confidential. You are free to decline this invitation, or withdraw from the study at any time, and no other attempts will be made to contact you. In the unlikely event that you suffer an injury as a result of participating in this research project, hospital care and treatment will be provided by the public health service at no extra cost to you.
160
8.3.5 Chairman’s Letter
Dear Re: An Exploration of Men’s Experience during the waiting period between PSA and Prostate Biopsy Results. A Case Study in a Metropolitan Radiology Unit. I am writing to inform you of the above research study being undertaken at this hospital. The project is headed by Ms Susan Heyes RN (nurse). The purpose of the study is to explore men‟s experiences of being screened for prostate cancer. It will also uncover the educational and information needs required by men at this time, and analyse the service provided. You are invited to participate in the project because you fit the criteria required by participants which is that you have had a digital rectal examination (DRE), a PSA blood test, and you are about to have a trans rectal ultrasound guided prostate biopsy (TRUS guided biopsy). You will also need to speak, read and write in English, as you will be asked to give consent to participate, and later you will be asked to read the transcript of your interview to check it is valid. You must be willing to be interviewed about your experiences, which involves discussing some personal information. If you would like to take part in this research, or if you have any questions regarding the study, please contact Susan Heyes by calling the Radiology Department reception desk on 82751605. Your message will be given to the researcher and you will be contacted as soon as possible. Any personal details that you provide will be treated with strict confidentiality. Participation is voluntary, and you may withdraw from the study at any stage. Participation or non-participation will not prejudice any of your medical treatment or entitlements. This study has been approved by the Research and Ethics Committee of this hospital. Yours sincerely
Dr Craig Whitehead - Chairman, Research and Ethics Committee
161
8.3.6 Letter of Introduction Dr Jan Paterson Professor of Nursing (Health Care for Older People) School of Nursing & Midwifery Faculty of Health Sciences GPO Box 2100Adelaide SA 5001 Tel: +61 8 8201 3266 Fax: +61 8 8201 3410
[email protected] www.flinders.edu.au/nursing/ CRICOS Provider No. 00114A
13 October 2009 Dear Sir This letter is to introduce Ms Susan Heyes, who is an Honours student in the School of Nursing and Midwifery at Flinders University. She will produce her student card, which carries a photograph, as proof of identity. Susan is undertaking research leading to the production of a thesis or other publications, which aims to explore men‟s experiences of being screened for prostate cancer. It will uncover the educational and information needs required by men during the time of screening, and also analyse the service provided. Susan would be most grateful if you would volunteer to assist in this project, by granting an interview, which covers certain aspects of this topic. The interview would take one hour of your time. At a later date, you will be asked to read the transcript of your interview to check it is valid. Be assured that any information provided will be treated in the strictest confidence and none of the participants will be individually identifiable in the resulting thesis, report or other publications. You are, of course, entirely free to discontinue your participation at any time or to decline to answer particular questions or ask for your transcript to be amended. Since Susan intends to make a tape recording of the interview, she will seek your consent, on the attached form, to record the interview, to use the recording or a transcription in preparing the thesis, report or other publications, on condition that your name or identity is not revealed. It may be necessary to make the recording available to secretarial assistants for transcription, in which case you may be assured that such persons will be advised of the requirement that your name or identity not be revealed and that the confidentiality of the material is respected and maintained. Any enquiries you may have concerning this project should be directed to me at the address given above or by telephone on 8201 3266 by fax on 8276 1602 or by email (
[email protected]). Thank you for your attention and assistance. Yours sincerely
Professor Jan Paterson, PSM, RN, PhD, FCN, MRCNA School of Nursing and Midwifery This research project has been approved by the Flinders University Social and Behavioural Research Ethics Committee (Project Number 41/09). For more information regarding ethical approval of the project the Secretary of the Committee can be contacted by telephone on 8201 5962, by fax on 8201 2035 or by email
[email protected]
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8.3.7 Informed Consent
Consent to Research Studies and Procedure SURNAME: __________________________________________________ FIRST NAMES _______________________________________________ DATE OF BIRTH ____/____/_____ FILE NUMBER______________________ I, _________________________________________________________ (First/or Given names) (Surname) have had explained to me by the investigator, Susan Heyes R.N. the nature and effects of the Research Study: An Exploration of Men‟s Experiences during the waiting period between PSA and Prostate Biopsy Results. A Case Study in a Metropolitan Radiology Unit. Lay title: An Exploration of Men‟s Experiences, of being Screened for Prostate Cancer. I have been provided with a Patient Information Sheet about the study, which I have read and understood. I understand that this research study will require me to answer some specific questions about myself, and have an interview with the researcher about my experience from the time I started being screened for prostate cancer, to the current time. This interview will take an hour, and will be tape recorded, so that the researcher can transcribe my exact words. I have understood and am satisfied with the explanations that I have been given and hereby consent to the participation in the above study. I understand the results of this study may be published, but my identity will be kept confidential. I understand that I may withdraw my consent at any stage without affecting my rights or the responsibilities of the investigator in any respect. I understand that representatives from the Hospital Research and Ethics Committee may need to access my medical record for information related to the study for the purpose of audit. I authorise access to my medical record for this purpose. I declare that I am over the age of 18 years. Signature: ___________________________________________Date___/___/____2010 Signature of Witness: __________________________________Date:___/___/____2010 Printed Name of Witness: ________________________________________________ Thank you for your time. The Flinders Clinical Research and Ethics Committee, and the Flinders University School of Nursing and Midwifery, have approved this research. You can contact the Executive officer, Tamara Rusby on 82044507.
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8.3.8 Semi-Structured, Open-Ended Interview Question Guide Introduction Introduce participant to interviewer.
Explain process of the interview.
Make participant aware of tape recorder.
Allow participant time to read and sign consent form.
Give the participant a copy of their signed consent form.
Answer any questions before commencing interview.
Demographics Name
Address
Telephone
DOB
Nationality
Language spoken at home
Occupation
Income
Highest education level
Living conditions (alone, with partner)
Other health conditions
Medication
Questions relating to prostate cancer screening Why did you originally seek medical advice from your GP? How long did you have symptoms before going to your doctor? Whom did you discuss any symptoms with? How did any symptoms impact on your everyday life or social activities? 164
What did you know about prostate cancer screening, before these tests? What have you said to male friends or family about your experience of being screened for prostate cancer, or the symptoms that you have had? What is their response when you talk about it? Please describe your experience of the DRE , PSA and TRUS-bx in terms of:- how it feels for a man to undergo this type of screening responses from spouse, family, friends/community. Can you tell me about your experience with: Doctors Blood test Appointment times Radiology department staff Hospital/ health care system Service provided How would you describe the service that you received during the screening process that you have been through? What kind of health problems do you and your male friends or family, talk about? What were your main concerns or internal thoughts concerning the prostate cancer screening that you have been through with these tests? Can you tell me about how you managed to cope with the prostate cancer screening and the potential prospect of having treatment for prostate cancer? What were your expectations of yourself, your spouse/partner, and your doctor? Did you have any needs during the screening tests, which were not met? What would you like to change about the screening tests that you have been through? What would you say to other men about to go through a similar screening process? Do you have any questions concerning this research study? End interview, thank participant for their time and sharing their experience.
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8.3.9 Thematic Data Analysis 1. Notes were taken after each interview and memos were written on ideas of categorising and themes for use later in the analysis stage. 2. More notes were taken when transcripts were being typed and repeatedly read. Ideas for themes were written down 3. Transcripts were read and „dross‟ was removed. Open coding began by highlighting and colour coding initial themes. 4. The themes were then collapsed into higher order headings. 5. The new set of themes was colour coded and the transcript worked through to ensure the list of themes was not repetitive. 6. The list of themes were discussed and validated by both of the researcher‟s supervisors. 7. Once a final list of themes had been generated, the transcript was re-read with the themes to guarantee that the themes matched the interview statements. 8. Each transcript was worked through in the same manner, from step 1-5, colour coding themes and re-reading. 9. Each colour-coded section was cut and pasted to ensure all relevant matching themes were together. Dialogue surrounding each highlighted colour-coded section was also cut and pasted to ensure continuity of the „story‟. 10. Transcripts were all re-read against the thematic list to maintain accuracy of themes among all 10 transcripts. 11. Thematic sections were placed together for ease in writing up the study. (Adapted from Philip Burnard’s (1991) 14 stage method of analysing qualitative interview transcripts)
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8.3.10 Development and Collapsing of Themes
Participant
No. of Themes developed before collapsing into the final three themes
(Pseudonym)
1st collapse
2nd collapse 5
Final themes
Adam
9
3
Brian
6
Craig
10
5
3
Derek
10
4
3
Ely
11
5
3
Frank
11
4
3
Greg
13
4
3
Harry
11
5
3
Ian
11
4
3
3
James 12 5 3 _________________________________________________________ Total no. of themes 104 41 30 Average no. of themes
10.4
4.5
3
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8.3.11 Criteria for Research ‘Trustworthiness’.
Criteria
Meaning
Demonstrate via
This Research
Credibility
Clear, faithfulness, loyalty and authentic description of the participants views by the researcher.(internal validity)
Member check, peer debrief, prolonged engagement, observation & audit trails.
Dependability
Logical & traceable audit trail, with detailed data on methods, decisions & final report. Sign posts of decisions that can be traced.
Reflexivity, incorporating selfcritical description of the research and interval, external dialogue.
Transferability (Fittingness)
The ability to replicate the research with similar results. The research data can fit into another context and represent another version or perspective of the results All data clearly originated from the research phenomena being studied.
Audit trail, Reflexivity.
Vivid description of participants experiences, including narrative and themes. Detailed description of decision trail of study development, analysis, & participant recruitment, throughout final report. Researcher journal and audit trail will assist others to follow the same path and replicate results. Clear description, documentation, audit trail & journal to confirm data is correct and original.
Confirmability
Reflexivity. Audit trail.
Adapted from (Koch & Harrington, 1997, Tobin & Begley, 2004, and Rolfe, 2006).
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8.4 CHAPTER 4 FINDINGS Table 8.4.1 Individual participant demographics for screening and TRUS-bx results Pseudonym
Age
PSA ng/ml
Vol cc
Index
Bx‟s
Anaesthetic
Ca-
Ca+
% Ca
Gleason
Ur
Rad.
Ns.
Son
P1
Adam
73
43
61
0.70
8
Lig Gel
4
4
50%
3+4=7
1
1
?
2
P2
Brian
75
18
28.3
0.63
6
Lig Gel
2
4
67%
3+4=7
2
1
3
1
P3
Craig
72
11.6
73
0.15
6
Lig Gel
6
0
0
0
1
1
1
2
P4
Derek
65
12
38.3
0.31
6
Lig Gel
3
3
50%
3+4=7
2
1
1
1
P5
Ely
70
6.8
25.8
0.26
6
Lig Gel
1
5
83%
3+3=6
-
1
2
1
P6
Frank
61
11
43.2
0.25
6
Lig Gel
3
3
50%
3+3=6
-
1
1
3
P7
Greg
69
6.8
48
0.14
6
Xyl Inj
5
1
17%
3+4=7
1
2
1
1
P8
Harry
65
8.7
40
0.21
6
Lig Gel
6
0
0
0
-
1
1
2
P9
Ian
70
13
46.6
0.27
12
Lig Gel
12
0
0
0
1
3
2
1
P10
James
81
5.1
17.4
0.29
6
Lig Gel
2
4
67%
3+3=6
1
1
4
1
This table shows each participant‟s age, PSA prior to TRUS-bx, Volume of his prostate seen by Ultrasound, Prostatic Index, how many core biopsies each man had, anaesthesia used for the TRUS-bx, and whether the results were negative or positive for PCa. If positive, the percentage of core biopsies that were cancerous, the Gleason‟s score if PCa+, the Urologist, Radiologist, Nurse and Sonographer involved. The Gleason score is used to classify cellular differences on microscopic biopsy tissue. The tissue sample is graded into primary and secondary tumor patterns and is recorded as being from 1-5 out of five, with one being well differentiated and five, poorly differentiated (Buckley and Pinto 2007). When the two score are put together the score is out of 10 and is recorded as e.g. 3 + 4= 7/10.
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8.5 ADDENDUM 8.5.1 PCa Screening Topics under Debate In a review by Laws (2004) the disparities between National guideline recommendations are discussed. Laws is a nurse and lecturer at a University in Adelaide, with experience in PCa nursing issues, and publications to his name. He states that, what men want, and what physicians offer, depends on the GP‟s view of screening or their fear of litigation. This review by Laws is of relevance to the current study due to its location, and similarity of Australian male and statistics, and that it is a nurse‟s point of view. However, studies referred to were outside of this study‟s date range and it uses a medical model rather than discussing the issues from the participant‟s point of view. He also comments on a number of problems concerning screening for PCa; 45-50% of PCa are beyond reach on DRE, false positives and false negatives of PSA, tests are “organ not cancer” specific, and it has not been proved that benefit outweighs harm (Laws, 2004, p.226).
Barry (2008), in his editorial on the current PCa screening trials, particularly among men 75 years and older, states that, all PCa tests could lead to tumour detection, which would never have caused harm, leading to difficult decisions and invasive treatment. According to the outcomes of these studies, 18 Radical Retro pubic Prostatectomy‟s (RRP) would need to be performed to save one death from PCa over a 12-year period. This equates to a huge amount of testing, time, expense, anxiety, embarrassment, and pain, over a long period, to save one life. On the other hand, some men are very fit and active in their late seventies, having a life expectancy of well over ten years may suggest that GP‟s clinical judgment is essential on the need 170
to discuss testing in men over 75years (Barry, 2008). The United States Preventive Task Force believe they have adequate verification to assess harm over benefit in men over 75 years, and is now against screening in this age group, but for discussing benefits and harm in men 50-74 (Barry, 2008).
Carter‟s editorial (2003) on informed consent, and other issues currently under debate, states that when PCa is discovered without screening (clinically), men tend to die of PCa than other illnesses, and that the mortality incidence is similar to breast cancer. However, in the elderly, PCa is more prevalent. These arguments are backed up by evidence from professional medical associations, though there is no reference made to ongoing international trials. There is also the issue of risks and complications involved in TRUS-bx, and the question of early detection, meaning that men live with the knowledge and anxiety of PCa longer or have treatment that they may not have needed, and which decreases their HRQOL (Laws, 2004, Carter, 2003).
Current methods of detecting PCa do not allow for the differentiation of PCa that is quiescent, and those that will kill, nor is there any evidence that early detection will prolong life, however, it has not been identified as ineffective either (Laws, 2004, Carter, 2003). In one of the article covering the debates, Meeks et al (2009) found that DRE was important in the detection of PCa even when PSA was low. They found that 66% of men with a PSA below 2.5ng/ml had suspect DRE, and that tumours that are more aggressive were found in men who had palpable tumours on DRE. This quantitative study found that 20% of PCa in their participants would not 171
have been found due to low PSA , in accordance with clinical criteria. The study advocates lower cut off rates for PSA, which also correlates to the current seven countries, European trial. Nevertheless, the 66% quoted in Meeks‟s study was only 51 men, and it could be questioned that the “suspect” DRE‟s found, may have been found anyway because they were “suspect”, regardless of PSA levels.
With the slow growth of PCa and the fact that 97% of cancer deaths are in men with a median age of 75-79, it is possible that these men already have a limited life expectancy. They would need to live more than ten years to benefit from treatment and curative treatment is low in this age group (Barry, 2008, Laws, 2004). Nevertheless, if detected and treated early, mortality can be decreased (Carter, 2003). In their article concerning health related quality of life (HRQL) Madalinska et al (2001, p. 96) discovered that men who have screening to verify healthy status, had higher overall HRQOL than the “normal” population, and were healthier than men who had clinically detected PCa. This article, while having a high response rate and good graphic information, also contains various biases and unknown criteria regarding those with urinary symptoms as their reason for attending PSA screening.
In the USA, Carter (2003, p.13) found that 30% of PSA tests were done without patient‟s knowledge and also questions the issue of consent, in relation to further tests and/or treatment. The American Urology Association (AUA), Cancer Society (ACS), College of Physicians (ACP), and Society of Internal Medicine (ASIM), all recommend informing patients by “any means”, because of the uncertainty of PSA screening, though there are no guidelines to stipulate what information needs to be 172
given
(Carter, 2003, p. 13). This is one of the hotly debated topics and one worth
discussion. In the area of participants, identifying and addressing ethical issues was the weakest area in these studies. Informed consent is vital and for that reason is an important part of research, and clinical, medical ethics.
In his review on the complexities of PCa screening, Laws (2004, p. 228) found that 38% of GP‟s did not discuss pros and cons, and that 39% spent less than 5 minutes on the issue of screening. A South Australian study found that 50% of men did not know what would happen if they had a high PSA (Laws, 2004, p. 228). These facts again, bring into question the issue of informed consent, and the fact that GP‟s may not have advised men of the guidelines that asymptomatic men should not be screened (Laws, 2004, p.258). However, Laws (2004) poses that men may request screening to counter allegations that men do not look after their health or “seek help”.
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8.5.2 Prostate Cancer Screening With PSA Recommendations Authority Australian Government Department of health & Aging Medical research council of Australia Urological Society of Australia & New Zealand Cancer Council of Australia American Cancer Society ACS
American Urological Association AUA
American College of Physicians ACP
American Society of Internal Medicine ASIM American Academy of Family Physicians US Preventive Services Task Force USPSTF Canadian Urology Association Medical research council of the UK UK National Screening Committee Europe
Recommend population screening? No population screening
Age to start PSA screening
Reference (MacKenzie et al,2007)
No population screening
(Brawley, 2004)
No- yes for healthy men 50-70 yrs after being fully informed. No-except for targeted healthy men after being fully informed. No-shared decision, pros Offer annual testing of & cons. men who expect to live>10yrs,from 50yrs, high risk men from 45yrs. No-shared decision, pros Men who expect to live & cons. >10 yrs, baseline PSA at 40 yrs, future screening based on this number.
(MacKenzie et al,2007)
No-shared decision, pros No guidelines & cons. Physicians to follow recommendations of USPSTF No-shared decision, pros & cons. No - Insufficient evidence to gauge benefit over harm No - Insufficient evidence to gauge benefit over harm No population screening
(MacKenzie et al,2007)
(Kantoff, 2009, Mayo Foundation, 2009, Mitka, 2009, Brawley, 2004)
(Greene et al, 2009, Kantoff, 2009, Mayo Foundation, 2009, McNaughton-Collins, 2009, Mitka, 2009, Vastag,2009, Brawley, 2004) (Mitka, 2009,Brawley, 2004)
(Brawley, 2004)
(Mitka, 2009, Brawley, 2004)
Men >75 yrs are unlikely to benefit from screening
(McNaughton-Collins, 2009, Mitka, 2009, MacKenzie et al,2007,) (Brawley, 2004)
No population screening
(Brawley, 2004)
No population screening
(MacKenzie et al,2007)
No population screening
(MacKenzie et al,2007)
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8.5.3 Ongoing Prostate Cancer Screening Trials & Recommendations US PREVENTIVE TASK FORCE (USPTF) Result-Insufficient evidence to recommend either for or against population PCa screening with PSA-no difference in mortality. Against screening men >75 yrs. Problems-Control group contamination-50% had PSA test & 44% were tested prior to enrolling in the study. Short follow-up. Reference (Greene et al, 2009, McNaughton-Collins, 2009, Vastag, 2009, Barry, 2008, Lin, et al, 2008, Brawley, 2004) EUROPEAN RANDOMISED STUDY OF SCREENING OR PROSTATE CANCER (ERSPC) Over 7 European countries from early 1990‟s median follow up 9 years and continuing. Grp 1-72,952 P‟s, aged 50-69ys - screening. Grp 2- 89,435 P‟s, aged 50-69 ys - control. Screening interval mostly 4 yearly, DRE every 2 yrs.PSA trigger 3.0ng/nl=Bx Result-PSA screening for PCa reduced the death rate by 20% (0.04 statistical significance) over a median follow-up of 9 years, but was related to elevated risk of over-diagnosis. 50% over-diagnosis (diagnosis of Ca that would never have caused symptoms during their lifetime). Over-diagnosis & over-treatment are the most undesirable outcomes of PCa screening. Insufficient evidence to recommend either for or against population PCa screening with PSA-no difference in mortality. Problems-Protocols were different in various countries. Reference (Barry, 2009, Holmberg, 2009, Kantoff, 2009, McNaughton-Collins, 2009, Schroder, et al 2009, Vastag, 2009, Barry, 2008) PROSTATE, LUNG, COLORECTAL, & OVARIAN CANCER SCREENING TRIAL (PLCO) USA 1993-2001 over 10 centres Grp 1-38,343 P‟s aged 55-74 ys screening. Grp 2-38,350 P‟s same ages control. Annual PSA for 6yrs annual DRE for 4yrs PSA trigger 4.0ng/ml Results-No reduction in mortality over 11 yr follow-up. No mortality benefit from screening with PSA & DRE Recommend-No screening for men >75 yrs. Reference (Barry, 2009, Holmberg, 2009, McNaughton-Collins, 2009, Vastag, 2009) U.S. PROSTATE CANCER INTERVENTION VERSUS OBSERVATION TRIAL (PIVOT) Results Expected in 2010.(Barry, 2008)
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8.6 ILLUSTRATIONS
Chair device (1967) (McAchran & Resnick, 2006)
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Cathode ray tube with Polaroid camera (1972) (McAchran & Resnick, 2006) Cathode ray tube with Polaroid camera (1972) (McAchran & Resnick, 2006)
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8.7 FOR WHOM THE BELL TOLLS Perchance he for whom this bell tolls may be so ill, as that he knows not it tolls for him; and perchance I may think myself so much better than I am, as that they who are about me, and see my state, may have caused it to toll for me, and I know not that... all mankind is of one author, and is one volume; when one man dies, one chapter is not torn out of the book, but translated into a better language; and every chapter must be so translated; God employs several translators; some pieces are translated by age, some by sickness, some by war, some by justice; but God's hand is in every translation, and his hand shall bind up all our scattered leaves again for that library where every book shall lie open to one another. As therefore, the bell that rings to a sermon calls not upon the preacher only, but upon the congregation to come, so this bell calls us all; but how much more me, who am brought so near the door by this sickness.... No man is an island, entire of itself; every man is a piece of the continent, a part of the main...any man's death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bell tolls; it tolls for thee. John Donne (1572-1631) 178
