TAIWANESE PEOPLE WITH CANCER AND NON WESTERN

Queensland University of Technology Faculty of Health School of Nursing

TAIWANESE PEOPLE WITH CANCER AND NON WESTERN MEDICINE (NWM) USE: A GROUNDED THEORY STUDY

By

王守玉 WANG, SHOU-YU (CINDY WANG), MNurs, BSc

Submitted for the degree of Doctor of Philosophy 2007

DISSEMINATION OF THE FINDINGS Dissemination of the research findings has been undertaken through the course of my enrolment in Doctor of Philosophy at the Queensland University of Technology through the following means:

In campus presentation: Wang, S. Y. (2004). Exploring the Use of Non Western medicine (NWM) by People with Cancer in Taiwan: A Grounded Theory Study. Queensland University of Technology, Brisbane, Australia.

International conferences: Wang, C., Han, C., Hsu, T. H., Windsor, C., & Barnard, A. (2006). Translation in qualitative research: what is evidence? The 7th International Interdisciplinary Conference-Looking to the Future: Opportunities & Challenges for Qualitative Research, 2006, 14th - 16th July, Gold Coast, Queensland, Australia. Wang, S. Y., Yates, P., & Windsor, C. (2006). Exploring The Use of Non Western medicine By People With Cancer in Taiwan: A Ground Theory Study. 14th International Conference on Cancer Nursing, September 27th – 1st October 2006, The Sheraton Centre, Toronto, Canada.

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ABSTRACT

Because of the long and entrenched history of Chinese medicine in Taiwan, people have traditionally incorporated this knowledge into their health care. With the appearance and growing acceptance of Western medical practices, multiple medical approaches have become more and more popular. Yet, despite the strong foundations of Western medicine in the treatment of cancer in Taiwan, the use of Chinese medicine continues to be popular (Lin, 1992, p. 114).

The focus of this research is the contextual construction of meanings about non Western medicine (NWM). The context for the study is Taiwan, the researcher’s home country. The purpose of the research is to explore the motivations for, and the processes by which, Taiwanese people with cancer incorporate NWM into their cancer treatment journey. Utilising a grounded theory approach, this research sought to explore the social processes by which Taiwanese people with cancer come to use non Western medicine. Twenty four in depth interviews were undertaken in the study.

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The findings of the study demonstrate that the interactions between people with cancer and their use of NWM are complex. Taken-for-grantedness emerges as the core category in the study. The core category situates the use of non Western medicine outside the institutionalised and regulated domains of health care. More specifically, the meanings attributed to NWM are embedded in the philosophical beliefs and social relationships that constitute the lives of the participants.

These findings suggest implications for our understanding of the co-existence of NWM and Western medicine by Taiwanese people with cancer and the social processes with which they engage.

Key words: non Western medicine (NWM), complementary and alternative medicine (CAM), symbolic interactionism, grounded theory, cancer, Taiwan

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STATEMENT OF ORIGINAL AUTHORSHIP

The work contained in this thesis has not been previously submitted for a degree or diploma at any other higher education institution. To the best of my knowledge and belief, the thesis contains no material previously published or written by another person except where due reference is made.

Signed:

Date:

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ACKNOWLEDGMENTS

I would like to express my appreciation to my supervisors, Patsy Yates, Carol Windsor and Chouh-Jiaun Lin (林綽娟) for their thoughtful guidance, continuing challenge my thinking, patience, encouragement and tireless support of my work in completing this PhD thesis. Especially, Carol, she is very generous with her time. We spend quite a lot of time together to discuss grounded theory and other qualitative approaches. It is sad that we may not have regular Friday appointment in the future. I will definitely miss it. In those one or two hours during the years of my PhD study, I have been learned a lot from her. It had been a great learning experience during my PhD journey. I am so much in love with grounded theory and qualitative research now.

I would also like to show my gratitude to my parents (王大全, 陳惠美) for supporting my study in Australia. They are very generous with their financial support to provide education to their children. My appreciation is hard to put in words. I also want to thank my elder brother, Devin (王守吉), my younger sister, Lucy (王守貞), my friends, Anderson (邱添福), 張貞慧 and Yeats (鄭森) for their encouragement

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from Taiwan and my Australian family Gwen and Merv for their English corrections, emotional support and share their life experiences with me to help me cope with my PhD study in Australia. I am also grateful to my friends in Australia, especially Tracy and Katherine (we go through doing qualitative research together and we know how hard it is), Naomi, Jamie, Sarah and all the other PhD student friends for their support and company during the highs and lows of my PhD study.

Finally, a very special thank is extended to the anonymous cancer patients in Taiwan who were very generous and supportive to this study. Without their participation, this study could not be completed.

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誌謝 首先我要感謝我的指導教授，Patsy Yates、Carol Windsor 及林綽 娟老師。感謝她們耐心的指導、訓練我的批判性思考，鼓勵及支持 我完成博士學位。尤其是我的指導教授 Carol，我們花了很多時間討 論紮根理論及其他質性研究法，想到以後與她星期五的討論因博士 論文的完成而結束不免有些感傷，在每週一到兩個小時的討論，在 博士的學習過程中，我從她那兒學到很多。這是一個很棒的學習經 驗，現在我很喜歡紮根理論及其他質性研究法了。

我也要對我的父母致上最誠摯的謝意，感謝他們支持我在澳大利亞 念書，他們總是無私的支持對子女的教育，感謝之心真是筆墨難能 形容。我也要感謝哥哥守吉、妹妹守貞、我在台灣的朋友阿福、貞 慧、鄭森，他們對我的鼓勵。我也要感謝 Gwen 及 Merv 他們英文上 的指導、情緒上的支持和分享他們的人生經驗幫助我渡過博士的學 習過程。我也要感謝在澳大利亞一起學習的朋友們，尤其是翠華、 凱微(我們都是一起做質性研究，我們知道真的很難)。另外還有 Naomi、倢伃、玉苹及其他博士班的朋友們，感謝他們陪我渡過在 博士學習過程中的高潮及低潮期。 vii

最後還要感謝一群台灣的癌症病人們非常支持這個研究，沒有他們 的參與，這個研究就無法完成。

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TABLE OF CONTENTS DISSEMINATION OF THE FINDINGS.................................................................. i ABSTRACT ................................................................................................................ ii STATEMENT OF ORIGINAL AUTHORSHIP..................................................... iv ACKNOWLEDGMENTS ......................................................................................... v TABLE OF CONTENTS .......................................................................................... ix LIST OF TABLES....................................................................................................xii LIST OF FIGURES ................................................................................................xiii CHAPTER 1 ............................................................................................................... 1 Introduction ................................................................................................................ 1 Background .......................................................................................................... 1 Cancer and Treatment Approaches in Taiwan...................................................... 4 Purpose of This Study .......................................................................................... 7 Structure of The Dissertation ............................................................................... 9 CHAPTER 2 ............................................................................................................. 10 Literature Review..................................................................................................... 10 Background ........................................................................................................ 10 The Location of NWM in Contemporary Society: A Global Perspective.......... 11 What Is CAM?-The Western Perspective .......................................................... 14 The Use of CAM in Western Societies .............................................................. 20 Eastern Perspectives on Health Care.................................................................. 25 Approaches to Medical Treatment in Eastern Societies............................. 28 The Use of Non Western medicine in Eastern Societies............................ 30 Why Do This Study? .......................................................................................... 36 Summary ............................................................................................................ 38 CHAPTER 3 ............................................................................................................. 40 Methodology ............................................................................................................. 40 Symbolic Interactionism .................................................................................... 41 Origins of Grounded Theory.............................................................................. 46 Grounded Theory ....................................................................................... 48 Definition of Grounded Theory ................................................................. 49 Contested Areas in Grounded Theory ........................................................ 51 Verification versus Generation........................................................... 52 ix

Theoretical Saturation ........................................................................ 56 The Use of Literature ......................................................................... 57 Interpretation versus Truth ................................................................. 58 Full Conceptual Descriptions versus Theoretical Codes and Theory 61 Micro versus Macro-Social World ..................................................... 63 Substantive versus Formal Theory..................................................... 64 Methodological Approach.................................................................................. 66 Summary ............................................................................................................ 68 CHAPTER 4 ............................................................................................................. 69 Methods..................................................................................................................... 69 The Elements of Grounded Theory.................................................................... 70 Sample Selection (Participants) ................................................................. 70 Participant Demographics .......................................................................... 73 Interview Approach.................................................................................... 75 One to one interview .......................................................................... 78 Data Collection .......................................................................................... 79 The Utilisation of Memos .......................................................................... 80 Data Analysis ............................................................................................. 81 Theoretical Sensitivity ....................................................................... 82 Comparative Analysis ........................................................................ 84 Open Coding ...................................................................................... 85 Axial Coding ...................................................................................... 86 Selective Coding (Core Category) ..................................................... 88 Validity in Translation of Interview Data........................................................... 90 The Role of the Researcher ................................................................................ 95 Ethical Implications ........................................................................................... 96 Validity and Reliability of This Study................................................................ 98 Summary .......................................................................................................... 102 CHAPTER 5 ........................................................................................................... 103 Incorporating NWM: The Taiwanese Context .................................................... 103 The Context...................................................................................................... 105 The Patterns of Use of Western Medicine and NWM.............................. 107 Forms of NWM Use................................................................................. 126 Regulation of Diet as Therapy ................................................................. 133 Summary (NWM Use as a Social Process)...................................................... 135

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CHAPTER 6 ........................................................................................................... 138 Philosophical Beliefs .............................................................................................. 138 Philosophical Beliefs........................................................................................ 139 Traditional Chinese Philosophy ............................................................... 141 Religious Practices ................................................................................... 147 Chinese Proverbs and Self Destiny .......................................................... 165 Belief in Fate .................................................................................... 166 The “Will” of People with Cancer ................................................... 169 The Ethos of “Doing Anything”....................................................... 173 Summary .......................................................................................................... 183 CHAPTER 7 ........................................................................................................... 185 Social Relationships ............................................................................................... 185 Family Connections ......................................................................................... 186 Community Connections.................................................................................. 198 Professional Relationships and Practices ......................................................... 209 Summary .......................................................................................................... 224 CHAPTER 8 ........................................................................................................... 225 Taken-For-Grantedness......................................................................................... 225 “Because after all we are Chinese…” .................................................................... 225 Taken-for-Grantedness ..................................................................................... 229 Implications of the Findings ............................................................................ 231 Limitations of This Study................................................................................. 234 Recommendations for Future Research ........................................................... 236 Conclusion ....................................................................................................... 237 References ............................................................................................................... 238 Appendix I: Participant Information Sheet......................................................... 266 昆士蘭科技大學 研究說明.................................................................................... 269 Appendix II: Consent Form .................................................................................. 271 昆士蘭科技大學 同意書........................................................................................ 273 Appendix III: The Interview Theme List............................................................. 275 會談主題.................................................................................................................. 276

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LIST OF TABLES Table 1 . Age distribution of participants………………………………………….74

Table 2. Educational level of participants………………………………………….75

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LIST OF FIGURES

Figure 1: Taiwanese People with Cancer and Non Western Medicine (NWM) Use ........................................................................................................................... 226

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CHAPTER 1 Introduction Background

People with cancer typically confront substantial physical and psychological alteration to their lives. These alterations often require a long process of adjustment as patients face many stressors and disruptions. The nature of contemporary cancer therapy means that patients are often faced with many complex decisions during the process of adjustment as they consider a variety of different treatment options. For some patients, this may involve consideration of non-medical approaches to cancer treatment or, from a Western perspective, treatments commonly referred to as complementary or alternative (Wang, Yates, & Windsor, 2006).

Treatments as alternatives to accepted orthodox medicine have existed in human society for as long as therapies have been documented. The ascendency of scientific medicine from the early 20th century, however, had the effect of suppressing the use of such therapies. But in the past few decades there has been a growing demand for

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therapies that have become termed, in Western societies, complementary and alternative medicine (CAM). In the United Kingdom, in 1998, there were a reported 15 million alternative medicine consultations and more than 40% of general practitioners who actively advocated CAM (Hunt & Millar, 2000, p. 68; Lewith, Kenyon & Lewis, 1996, p. 3). In the US it was estimated that $21.2 billion was spent on CAM in 1997, with $12.2 billion attributed to patient spending (Eisenberg et al., 1998, pp. 1569, 1571-1572).

In the oncology field, there is also an increasing population in the Western world using CAM (Cassileth & Chapman, 1996, p. 1026) and this is evidenced in the growing number of cancer centres integrating selected CAM into their daily care (Peace & Simons, 1996, pp. 53-54). Yet, despite widespread use, few studies have explored the perspectives of people with cancer who use CAM and how and why people come to use CAM. Moreover, while definitions of CAM will depend on the social and cultural contexts in which health care is provided, the role and meaning of various contemporary and traditional therapeutic modalities in the treatment of cancer among different cultural groups has not been explored in any depth.

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In an earlier study, the responses of nurses working in several Australian metropolitan hospitals and community care institutions towards people with cancer who use CAM were explored (Wang & Yates, 2006). The study indicated that nurses respond in a variety of ways to patients who use CAM. Specifically, this study found that nurses may be open, sceptical, or ambivalent towards patients who have chosen to use CAM. Importantly, nurses’ responses to different patients appeared to be influenced by a range of social and clinical factors. For example, nurses perceived that patients used CAM for a range of reasons including patients’ past experiences with health care and the impact of the cancer treatments on patients. Nurses were also of the view that patients had various different motives for using CAM which included a desire to achieve comfort or to achieve a cure. These different motives often resulted in differing nursing responses. The study conclusion argued the importance of exploring the use of CAM from the perspectives of patients to better understand the processes by which a person with cancer comes to use CAM (Wang & Yates, 2006, pp. 289-293).

The researcher has long had an interest in the field of cancer nursing and worked in this area in Taiwan. When studying for a Master of Nursing (Cancer Nursing) in Australia, her research focus was an exploration of nurses’ responses to people with

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cancer who use complementary and alternative medicine. This further developed an interest in this field. In particular and when working in Taiwan, the researcher observed cancer patients using both Western medicine and non Western medicine (NWM). This observation prompted an interest in exploring how and why people use NWM.

For Taiwanese patients with cancer, the context of cancer treatment decision making varies considerably from the Western world. In particular, the dominant paradigm underpinning the meanings and definitions of cancer treatments differ in Western and non-Western countries. This difference highlights the importance of examining issues associated with the use of various treatment approaches within different sociocultural contexts.

Cancer and Treatment Approaches in Taiwan

Cancer has been the leading cause of mortality in Taiwan since 1982 and the death rate from cancer is increasing each year in Taiwan. The mortality rate from cancer was 152.88 per 100,000 in the population in 2003 and increased to 163.8 per 100,000

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of the population in 2005 (Department of Health Taiwan, R.O.C., 2003, pp. 51-53; Department of Health Taiwan, R.O.C., 2005).

Modern approaches to cancer treatment in both Taiwan and the Western world generally include one, or a combination of, therapeutic modalities including surgery, chemotherapy, radiotherapy or biotherapy. Such medical treatments are widely available in Taiwan and constitute a major component of the health care system. However, while generally considered CAM in the Western medical world, Traditional Chinese Medicine and Folk Medicine also constitute dominant health care systems in Taiwan. The current and official profile of the medical workforce refers to both physicians (Western Medicine) and Chinese medicine doctors (Traditional Chinese Medicine) (Department of Health Taiwan, R.O.C., 2001, p. 22). However, the numbers of practitioners who engage in folk medicine is not clear and such information is not included in official reports.

In Taiwan, consultation and prescriptions related to Western medicine and Traditional Chinese Medicine are covered by National Health Insurance (apart from a certain percentage fee) (Traditional Chinese Medicine Committee, 2001, pp. 280-281). Legislation relating to Traditional Chinese Medicine was also established

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by the Taiwan Health Department and approved by the Legislative Yuan in 1994 (Department of Health Taiwan, R.O.C., 2001, p. 34). Since then, the use of Traditional Chinese Medicine has been the subject of greater regulation in Taiwan.

Like Traditional Chinese Medicine, folk medicine is also reported to be popular amongst Taiwanese people. The main difference between Traditional Chinese Medicine and folk medicine is that the former stresses the importance of balance within the body in order to avoid disease, while the latter is closely connected to religious practices such as going to the temple, using secret herb remedies and fortune-telling (Chen et al., 1999, pp. 295-296). Folk medicine in Taiwan has thus a close relationship with Taiwanese religious beliefs and cultural behaviour.

Taoism and Buddhism are the two main religions in Taiwan and they share the similar aims of a better life and enlightenment (Rodgers & Yen, 2002, p. 215), both of which maintain a strong influence in Chinese culture. For example, both stress the principle of “Inn” and “Ko” (cause and effect), that is, a belief that fate determines health and diseases (Chen, 2001, p. 270). The concept of “knowing fate” involves the belief that from the moment of birth your life is controlled by fate. No matter what you do to avoid it, fate will always predominate. Some writers suggest this

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perception may help people to cope when their disease outcome is not as originally expected (Chao, 1995, p. 149).

Taiwanese patients may thus hold a diverse range of beliefs about different approaches to the management of various diseases or symptoms. Patients may choose one or combination of therapies, including Western medicine, Traditional Chinese Medicine and folk medicine.

While some suggest that Traditional Chinese Medicine and folk medicine are still, for most people, a second choice and are mainly used for the management of chronic disease (Chen, 2001, p. 79), the specific reasons that patients make certain choices for treatment of diseases such as cancer, are not well understood.

Purpose of This Study

Although the definition of CAM (which will be explored in Chapter 2) is complex, the term “CAM” is commonly used in Western society to describe a wide range of therapies including Traditional Chinese Medicine and folk medicine. However, the term CAM may not adequately describe such therapies in the context of non Western 7

health care systems such as in Taiwan, since in this context, such therapies may not have the same historical and social meanings.

People with cancer in Taiwan may face a range of decisions and choices about treatment. These may include choices about whether to use Western medicine, a non Western medicine approach such as Traditional Chinese Medicine and folk medicine, or a combination of these two approaches.

The focus of this research is on the contextual construction of meanings about the use of non Western medicine (NWM). The context for the study is Taiwan, the researcher’s home country. The purpose of the research is to explore the motivations for, and the processes by which, Taiwanese people with cancer incorporate non Western medicine into their cancer treatment journey. Utilising a grounded theory approach, this study aims to explore the processes by which Taiwanese people with cancer use non Western medicine.

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Structure of The Dissertation

This chapter has presented the background of CAM, or so called NWM approaches to cancer treatments in Taiwan and the purpose of this study. In the second chapter, a review of the literature is presented which includes the location of CAM in contemporary society, the use of CAM in Western societies, Eastern perspectives on health care and the use of non Western medicine in Eastern societies.

The methodology is addressed in the third chapter. The focus of this chapter is on the symbolic interactionist underpinnings of the study methodology and some contested areas in grounded theory. Chapter 4 explores the methods used in this study including sample selection, data collection and data analysis. Further, the role of the researcher, ethical implications and validity and reliability of this study are also discussed.

Chapters 5 to 7 present the findings of this study and also examine and compare them with current literature in the relevant field. The final chapter explores further the findings and their implications, addresses limitations of the study and pose recommendations for the future research.

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CHAPTER 2 Literature Review

Background

Complementary and alternative medicines (CAM) have long existed in human society. Long before the emergence of modern medical technology, humans relied on treatments that modern medicine now refers to as CAM to treat diseases in Western society. Yet, although exposure to modern medicine has continued for a number of centuries, more and more people are seeking alternative ways to manage their diseases.

In contrast to the West and because of a long and sustained history of the use of traditional therapeutic forms in the East, such as Traditional Chinese Medicine in China and Ayurveda in India, the term “CAM” is not as meaningful. Thus, for the purposes of the present study, the term “non Western medicine” will be utilised when

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referring to treatments based on Eastern traditions and other alternative approaches which may in Western society be referred to as CAM.

The aim of this chapter is to explore the concept of non Western medicine and the current status of and issues associated with the use of non Western medicine in both Western and Eastern societies.

The Location of NWM in Contemporary Society: A Global Perspective

The use of NWM or CAM is a worldwide phenomenon and has received recognition as such. International organizations and national institutions have successively established departments or published reports regarding CAM. For example, the Research Council for Complementary Medicine was established in 1983 in the United Kingdom (The Research Council for Complementary Medicine, 2003, p. 1). In 1992, the National Institute of Health of the U.S. Department of Health and Human Services, established the National Centre for Complementary and Alternative Medicine (NCCAM) (National Centre for Complementary and Alternative Medicine, 11

2003, p. 1).

The World Health Organization (WHO) states that complementary and alternative medicine (CAM) is used alongside traditional medicine (TM). WHO refers to CAM as a wide range of health care interventions that were not originally developed in Western countries or are not integrated into the mainstream health care system (World Health Organization, 2002, p. 7). In 2001, a major report on the Legal Status of Traditional Medicine and Complementary/Alternative Medicine: A Worldwide View was published by the WHO and a total of 123 out of 191 member countries contributed to this report from six continents worldwide (WHO, 2001, p. ix). This report provides comprehensive references regarding the utilisation of traditional medicine and complementary and alternative medicine in different countries. Background information, statistics, regulation, training and education, insurance coverage and various models of care and policy are amongst the many issues discussed in this report (WHO, 2001, p. 4). However, as Taiwan is not a member of WHO, the report does not include information about Taiwan.

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Subsequent to the 2001 report, a number of short or long term plans related to CAM have been published by the WHO and other key health organizations. For example, a report on Traditional Medicine (TM)/complementary and alternative medicine (CAM) was presented in the WHO Traditional Medicine Strategy 2002-2005 in 2002. This three year strategy sets out plans for action regarding CAM in the areas of policy, safety, efficacy, quality, access and reasons for use (World Health Organization, 2002, p. iv). Similarly, the National Centre for Complementary and Alternative Medicine (NCCAM) in the United States published Expanding Horizons of Healthcare: Five Year Strategic Plan 2001-2005 in 2001. The NCCAM report identifies strategic areas including investing in research, training CAM investigators, expanding outreach and facilitating integration (NCCAM, 2001, p. 3).

In addition, a number of journals dedicated to CAM have emerged1. Such journals explore the many uses of CAM and present various forms of evidence in support of CAM. Hundreds of websites regarding CAM have also appeared on the internet, although these sites often present little valid evidence on the therapies they are promoting (Spencer, 1999, p. 10).

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The journals include Evidence-based Complementary and Alternative Medicine, Alternative Therapies in Clinical Practice, Alternative Therapies, Journal of Alternative and Complementary Therapies, Alternative Therapies in Health and Medicine and Mind-Body Medicine. 13

Such reports and publications highlight the important role of CAM in modern health care systems across the world. More and more organizations have subsequently established departments or sub-departments to research CAM. An example is the National Health and Medical Research Council (NHMRC) in Australia which has just provided AUS$ 5 million to fund research into CAM (NHMRC, 2006, p. 1).

What Is CAM?-The Western Perspective

There is a long history of the use of CAM in the search for effective treatment processes. Yet, with the evolution of medical treatment, those therapies perceived as alternatives to mainstream treatments have varied considerably. In fact, in Western society, many accepted medical treatments that preceded contemporary technological advances are today referred to as CAM.

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Definitions of mainstream and other forms of treatments in Western societies thus derive from the dominance of the scientifically based medical model. As a result, CAMs and their predecessors are generally described in Western societies as unproven remedies and techniques (Cassileth & Chapman, 1996, pp. 1026-1027).

The term CAM has only appeared in the past few decades. Terms similar in meaning have been used over the centuries to delineate types of approaches to the treatment of the ill. For example, natural healing (nineteenth century), drugless healing (early twentieth century) and holistic healing (since the 1970s) are all terms which have been used to describe other than mainstream approaches to maintaining health (Whorton, 1999, pp. 16-17). In the 1970s and 1980s, terms such as “self-contained” and “alternative medicine systems” were utilised in many fields to describe diagnosis and aetiology of diseases. Gradually, such therapies have come to be referred to as alternative medicine (Peters et al., 2002, p. 5).

In addition, there are a variety of treatments that are increasingly perceived as complementary to conventional therapies, including relaxation, massage or aromatherapy and are referred to as complementary medicines. The boundary 15

between alternative and complementary medicine is, however, not clear as some authorities use the terms as synonyms (Peters et al., 2002, p. 5).

In Western Society, CAM has been defined as “diagnosis, treatment and/or prevention which complements mainstream medicine by contributing to the common whole, by satisfying a demand not met by orthodoxy or by diversifying the conceptual frameworks of medicine” (Ernst & Fugh-Berman, 2002, p. 140). The Cochrane Collaboration has accepted the foregoing definition (Engebretson, 2002, p. 177; Ernst & Fugh-Berman, 2002, p. 140). The National Centre for Complementary and Alternative Medicine (2003) in the United States also defines complementary and alternative medicine as “a group of diverse medical and health care systems, practice, and products that are not presently considered to be part of conventional medicine” (p. 1).

The American Cancer Society (2006) guide for the use of complementary and alternative methods states that these forms of therapies are distinct. Complementary medicine is described as therapy that is used alongside mainstream health care and alternative medicine is that which is used instead of the standard medical approach. 16

(p. 1). In this definition, alternative therapies thus refer to (scientifically) unproven methods that are used as substitutes for conventional therapies, while complementary therapies are perceived as supportive therapies to assist conventional therapies (American Cancer Society, 2000, p. 23).

This distinction is similar to that proposed by a number of authors who define complementary therapies as those that supplement conventional therapies to promote healing, increase comfort and enhance health. In contrast, alternative therapies are conceived of as remedies or regimens that substitute for mainstream treatment (DeKeyser et al, 2001, p. 42; Stevenson, 1997, p. 49; Engebretson, 1999, p. 214). Other authors argue that complementary and alternative therapies are recognised as those treatments that, at a particular historical point, do not integrate into the conventional treatment system, but that may become less marginalised over time (Chez et al., 1999, p. 33). In addition, CAMs are also defined as those treatments generally not taught in western medical schools or are perceived as less applicable in medical curricula (Eisenberg et al., 1993, p. 246).

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Thus, a predominant view in the Western literature is that complementary therapies supplement orthodox medical treatment and alternative therapies are perceived as non-mainstream and are used instead of conventional therapies. While these distinctions may appear to provide some clarity, there is a notable lack of precise definition of what comprises conventional and non-conventional therapies.

Various terms are thus used to describe these treatments; such as, complementary therapy, alternative therapy, unconventional therapy, complementary medicine (CM), alternative medicine (AM) and complementary and alternative medicine (CAM). One feature of these therapies is that most have a tradition that is not based in Western culture or in earlier Western medicine. Moreover, these therapies are often seen as more holistic, viewing the individual as a whole person rather than focusing on physical signs and symptoms (Albrecht, Higginbotham & Freeman, 2001, p. 27).

According to the literature and based on the above definitions, the most popular CAM in Western countries include:

∗ Herbal medicine, such as, Traditional Chinese Medicine or ayurveda

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∗ Acupuncture

∗ Diet and nutrition; for example, macrobiotics and shark cartilage

∗ Mind-body techniques, such as, reflexology, prayer and meditation

∗ Manual healing methods; for example, chiropractic therapy

(Cassileth & Chapman, 1996, pp. 1028-1031; Parkman, 2001, p. 37; Cassileth, 1998, p. 299; Cunningham & Herbert, 2000, pp. 165-166).

From the above, we can conclude that just as approaches to maintaining health and the treatment of disease have differed considerably across cultures throughout history, meanings attributed to CAM may diversify or shift within different social contexts (Low, 2001, p. 107).

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The Use of CAM in Western Societies

During recent decades, there has been a growing tendency towards the use of CAM in Western society. Ott’s (2002) study estimated that 7%-64% of people worldwide with cancer use CAM alongside other treatments (p. 162). A survey of 1539 adult respondents in the United States indicated that 34% had used at least one kind of CAM in the previous year, the most commonly used being acupuncture and chiropractic (Eisenberg et al., 1993, pp. 246, 248-249).

In assessing this trend, a 1997 survey of 1500 Americans estimated that 42% of the sample had used some kind of CAM during the previous year (National Council Against Health Fraud, 1998, p. 1). A comparison of surveys of random samples of 1539 American householders in 1990 and 2055 American householders in 1997, found a 380% increase in the use of herbal medicine (one kind of alternative therapy) (Eisenberg, et al., 1998, p. 1574).

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In England, a population based survey (n=2668) found that 10.6% of adults in England had visited a CAM practitioner in the last 12 months and 46.6% of the population were life-time users. Furthermore, it was estimated that annual out-of-pocket expenses for these therapies constituted ₤450 million (AUD 1224 million dollars) (Thomas, Nicholl, & Coleman, 2001, pp. 2-6). Similarly, an Australian study identified that 57% of the population in the state of Victoria had utilised CAM in the past five years and had spent $AU50 million dollars per year on these therapies (MacLennan et al., 1996, p. 569).

Thus, the above studies indicate that the use of CAM has grown significantly in Western society and it has assumed an increasingly important role in the Western health care system. Furthermore, results from a national survey in the US of people who use both approaches (CAM and conventional treatment), found that 79% of participants perceived that a combination of both achieved a better outcome (Eisenberg et al., 2001, p. 344).

Despite the apparent popularity and extensive usage of CAM in the West, a 1997 survey reported that only 38.5% of Americans discussed CAM with their physicians 21

(Decker, 2000, p. 49). Although patients and doctors are often seen as mutually deciding upon optimal treatment choices (Charles, Gafni & Whelan, 1999, p. 652), a 1997 national survey which investigated perceptions about CAM relative to orthodox treatment reported that 63%-72% of study participants did not tell or only partially informed their medical doctors that they were using CAM. The most common reasons cited (more than 60% of participants) were that “it wasn’t important for the doctor to know” and “the doctor never asked” (Eisenberg et al., 2001, pp. 344, 348-349).

One explanation for this situation is that health providers may not provide a trusting environment in which patients feel comfortable and relaxed talking about CAM. Moreover, some health professionals lack knowledge of CAM (Cassileth, 1998, p. 301; Cassileth & Chapman, 1996, p. 1032). As a result, studies suggest that patients seek information about CAM from alternative sources such as complementary medicine networks or by word of mouth (Strasen, 1999, p. 250; Ades & Yarbro, 2000, p. 625). This suggests that health professionals may not be aware that patients are using CAM and that the extent of use of CAM, as an option for maintaining health and/or treating disease, is under-reported.

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As noted, the predominant criticism of CAM in Western societies is that they do not have scientific evidence to support their use. Yet, for some therapies classified as CAM, there is increasing scientific evidence to support their efficacy. Vickers and Cassileth (2001) reviewed sixteen clinical trials of acupuncture-point stimulation for nausea and vomiting related to chemotherapy, eleven of which found significant improvements following the use of acupuncture treatment (p. 229). An earlier meta-analysis of 22 randomised controlled trials (RCTs), involving 1042 patients in total, found that acupuncture is effective in treating migraine (Melchart, et al., 1999, p. 784). There is also some evidence that acupuncture is particularly helpful for painful muscle spasms. In a survey of 183 cancer patients who had used acupuncture treatment, 52% reported that the treatment relieved their cancer pain (Twycross, 1994, pp. 533-534).

While the evidence base is limited and contradictory, such research has seen a blurring of the boundaries between orthodox Western medicine and CAM in the Western world. For example, America’s Food and Drug Administration (FDA) has now identified acupuncture as a safe and effective medical intervention (Gecesdi &

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Decker, 2001, p. 37). The World Health Organization (WHO) has also acknowledged that acupuncture can effectively treat more than 100 different signs and symptoms, such as headache and chronic pain (Gecesdi & Decker, 2001, p. 37). The relatively recent endorsement of acupuncture as an effective treatment has occurred with the emergence of some empirical evidence that acupuncture may stimulate the brain to release endorphins, the natural pain-killing hormones, which reduce the perception of pain (Shen & Glaspy, 2001, pp. 148-149).

Nonetheless, a major obstacle to the effective co-existence of CAM in Western societies is still a lack of scientific evidence to support its use. Critics claim that the evidence available is not of a high level and often flawed (Tulder et al., 2002, p. 7). For example, a Cochrane Library systematic review of eleven randomised controlled trials (RCTs) on the use of acupuncture for low back pain concluded that there is limited evidence of the effectiveness of this treatment (Tulder et al., 2002, p. 10).

A lack of agreement over what constitutes evidence further contributes to a diversity of views in this area. Chi (1994) argues that the monopoly Western medical practitioners enjoy over medical resources reinforces the scientific approach to 24

evaluation of treatment and ignores the integral link between culture and the efficacy of traditional or alternative treatments. In other words, as Chi (1994) notes, it is culture rather than science that defines the efficacy of alternative treatments. What is important, according to Chi (1994), are the effects that people are looking for in their use of other than mainstream Western medicines (pp. 308-309).

Eastern Perspectives on Health Care

Differences exist in the meanings attributed to non Western medicine in Western and Eastern cultures. Culture may influence health care professionals’ practices, beliefs, preferences and standards, thereby guiding their practice (Thomas, 2002, p. 78). Culture refers to views about social, physical, biological and economic environments. Differences in perspectives derive from social requirements and various types of beliefs, behaviour and values (Gilbert, 2002, p. 75). Hence, it is necessary to explicate the different philosophical approaches towards diseases and health in Western and Eastern cultures.

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Western medicine focuses on evidence-based practice and emphasises the critical requirement that practices are based on plausible evidence established by scientific research methods and in particular, randomised controlled trials. In contrast, Eastern medicine places emphasis on experience more so than scientific evidence. Qi (Chi) (energy flows inside the human body, one of the elements that is important in utilising Traditional Chinese Medicine) is one example that can be used to explain the implications of these differences. That is, there is no evidence to explain the existence of Qi (Chi) in the scientific world and indeed there may be no scientific methods available to show that Qi (Chi) does exist (Hufford, 2002, p. 20). Supporters of non-Western approaches to health care argue, however, that while it is difficult to scientifically test such treatments, there is no reason to forsake their use (Vickers, 2000, p. 26).

Western medicine also typically focuses on the treatment of specific diseases and diseases are conceptualised as malfunctions of particular parts of the body. The objective of Western medicine is to then improve or reverse malfunctions through medication or surgical intervention.

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Eastern medicine (such as Traditional Chinese Medicine), on the other hand, is focused on what is wrong with the body as a whole rather than specific parts of the body. Diseases are often seen, for example, as being caused by the disturbance of Yin and Yang inside the body. The purpose of therapy or medicine is to restore these two components (Spencer, 1999, p. 6).

Therefore, Western medicine generally perceives the human body as a machine and medicine as a mechanism to eliminate symptoms and enhance the body’s performance. However, according to Eastern medicine, the body is viewed as a “garden” where medicine cultivates health in order to maintain or improve the human body’s functions (O’Connor, 2000, pp. 46-47; Thomas & Bright, 2002, p. 84). The human body is seen as a whole entity that needs to be cultivated in order to maintain normal function (Shih, 1999, p. 6).

Furthermore, Engebretson (2002) argues that therapies typically defined as CAM in the Western world are more focused on systemic problems rather than specific symptoms or diseases. As such and from an Eastern philosophical stance, the randomised controlled trial (RCT), by attempting to isolate cause and effect 27

relationships, may block aspects of the remedy that may affect the interventions and outcomes (pp. 183-184). As such, Engebretson (2002) notes, “it is important to keep in mind that absence of evidence is not evidence of absence” (p. 184).

Understanding this contradiction is important in understanding the differing epistemologies of Western medicine and Eastern medicines. The approaches to obtaining evidence in Western medicine may not apply to many non Western medicines, including Traditional Chinese Medicine (Easthope, 2003, p. 2; Carter, 2003, p. 134).

Approaches to Medical Treatment in Eastern Societies

In Western countries, patients who are ill are more likely to seek conventional approaches (Western Medicine). However, if not satisfied, patients may look for alternatives such as Traditional Chinese Medicine and acupuncture (non Western medicine). On the other hand, Traditional Chinese Medicine and acupuncture have

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been used to treat and prevent diseases for over 3000 years in China and are viewed by many as mainstream health–enhancing procedures from the point of view of Eastern tradition (Smith-Fassler & Lopez-Bushnell, 2001, pp. 36-37). People who come from an Eastern background, therefore, may not view Traditional Chinese Medicine or acupuncture as complementary or alternative, but rather as the only treatment, or at least an integral medical procedure to be used for maintaining health or treating health problems.

There have, however, been substantial changes over the past century in the nature of health care systems in many Eastern countries, as the rise of modern scientific medicine and its achievements have become integrated into Eastern systems. Historically and before the appearance of Western missionaries in 1860, Traditional Chinese Medicine was the mainstream medical treatment in Taiwan. However, the Western influence was significant in transforming health care and this was reflected in the relatively rapid and widespread establishment of Western medical clinics (Hu, 1999, p. 92). This transformation was reinforced during the five decades of Japan’s occupation of Taiwan (1895-1947) when the practice of Chinese medicine was suppressed and Western medicine schools flourished.

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During this period (1895-1947), over 2800 practitioners were trained in Western medicine and thus the Western model rapidly assumed the status of mainstream treatment within the health care system in Taiwan (Chi, 1994, pp. 310-311; Hu, 1999, p. 92; Hu, 1999, p. 187). It is within the context of the relatively recent introduction of Western medicine into health care in Taiwan that this study seeks to explore perceptions of and motivations for the use of non Western medicine.

The Use of Non Western medicine in Eastern Societies

The following studies show the popularity of NWM in Eastern cultures. A Taiwanese cancer study reported that 64% of the participants use Chinese Medicine, with the cost of US$40-2000 dollars per month for 70% of participants (Liu et al., 1997, p. 37). A Japanese cancer study reported that 32% of the patient informants were non Western medicine users (Eguchi, Hyodo, & Saeki, 2000, p. 30).

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While changes within health care systems and government policies have been substantial, traditional cultural beliefs about health and illness amongst Eastern populations remain important for many. In Taiwan, although Western Medicine became increasingly dominant during the early twentieth century, Traditional Chinese Medicine retained an important role in Taiwanese people’s daily lives. For example, the Traditional Chinese Medicine Committee was established in 1987 by the Health Department to plan for and deal with issues such as administrative matters and research and development regarding Traditional Chinese Medicine in Taiwan (Department of Health Taiwan, R.O.C., 2001, p. 34). Since its establishment, this committee has completed a range of projects, including setting up regulatory systems for Traditional Chinese Medicine, giving licences to pharmaceutical companies, encouraging pharmaceutical companies to develop new types of medication, and establishing a clinical trial environment for Traditional Chinese Medicine (Traditional Chinese Medicine Committee, 2003, p. 195).

Therapeutic modalities that are commonly used include those based on different ethnic traditions (for example, Traditional Chinese Medicine and Ayurveda), understanding of wellness and health (reflexology and aromatherapy as examples)

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and other alternative approaches to scientific reasoning (such as, naturopathy and chiropractic) (Thorne et al., 2002, p. 671).

According to the committee, certain treatments are considered medical procedures; such as Traditional Chinese Medicine for internal use and acupuncture treatment. However, other items not considered medical procedures include herbs for external use, massage, foot massage, qigong and prayer, because all are non internal medicines or non invasive procedures (Traditional Chinese Medicine Committee, 2001, p. 29; Traditional Chinese Medicine Committee, 2003, pp. 195-196). Nevertheless, all such therapies are reported to be commonly used among Taiwanese people.

The importance of some cultural beliefs in shaping the meanings attributed to such therapies in Eastern countries is suggested by a number of authors. For example, according to Domino and Lin’s (1993) study, which investigated 138 Taiwanese college students, the cancer metaphor identified as the most important was “a thunderclap in fine weather” (p. 52). Such beliefs influenced a person’s view about the type of treatment that may be sought for an illness such as cancer. A Taiwanese 32

study by Duh (1992), similarly reported that only 32% of breast cancer patients relied on Western medicine alone and 68% of patients sought a combination of both Western medicine and folk medicine. Moreover, religious ceremonies were used by 92% of the study patients (p. 130).

Wang (1990) found that the choices of Taiwanese patients in relation to treatment were dependent upon the specific diseases or symptoms that manifested. His study found that more than 80% of participants chose Western medicine in the cases of fever or external bleeding and 83.6% perceived Western medicine as the better approach in the case of cancer. However, only 44.1% of participants chose Western medicine when suffering from less specific symptoms such as low back pain (Wang, 1990, p. 26). Wang’s (1990) study also reported that more than two thirds of participants incorporated Chinese medical treatment and Chinese medicine remedies when recovering from an illness and 85.7% supported the use of these treatments following the delivery of a baby (p. 26). Chiou’s (1999) study of people with ESRD (end-stage renal disease) receiving hemodialysis in Taiwan found that folk remedies such as herbs and food, Traditional Chinese Medicine prescribed by doctors, and

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Chinese exercises were commonly used in combination with the scientific technological approach of dialysis (p. 401).

The above studies indicate that Traditional Chinese Medicine and folk medicine continue to flourish, despite the growth of Western medicine. Importantly, the studies also suggest Taiwanese patients seem to have particular conceptions of the role of such therapies in different health situations. Traditional Chinese Medicine, seen by many Taiwanese as gentle and traditional health concepts, continues to be valued by patients for maintaining and restoring health in many different situations (Chen et al., 1999, pp. 295-296). In fact, more and more hospitals have combined Eastern and Western medicine in health care systems to accommodate traditional cultural beliefs, a practice rarely observed in Western medical systems.

The perceptions of patients from Eastern countries about the use of non Western medicine are thus likely to vary from those of Western countries. The use of some types of treatment, such as Traditional Chinese Medicine and acupuncture, notably in palliative settings, are more common in Eastern countries than in Western society.

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While many forms of traditional treatments continue to be used by Taiwanese people, the extent to which they are openly discussed between health professionals and cancer patients today is unclear. For example, one survey of 138 terminal cancer patients in Taiwan found that 81.9% of patients had used at least one kind of treatment defined in Western terms as a CAM, but more than half the users (56.3%) had not informed their doctors of this practice. Moreover, 12.3% of the participants discounted Western medicine because they were using non Western medicine (Hsin et al., 1996, p. 129). A further Taiwanese study found that 67.2% of study participants used non Western medicine while undergoing chemotherapy and that information on non Western medicine was drawn from sources other than physicians. In this study 10.9% gained information from Chinese Medicine practitioners with most information (79%) obtained by word of mouth (Liu, et al., 1997, p. 39).

The term “CAM” has been created in the Western literature. However, the meaning of “CAM” in Eastern cultures differs to that described in Western literature. Traditional Chinese Medicine and acupuncture for example may not be defined as CAM in this context. As such, studies which explore the meaning and role as well as

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the process of using different treatment approaches need to acknowledge the importance of this sociocultural context. Since the use of non Western medicine is likely to have different meanings in Eastern countries, it is important that further research is undertaken to explore these issues.

Why Do This Study?

As noted, many people across the world today have embraced non Western medicine and sought to combine western medical care and non Western medicine in order to maintain health or overcome health problems (McCabe & Kenny, 2003, pp. 259-260). In Western societies, there are increasing numbers of people using non Western medicine (CAM), and notably people with cancer. In Eastern societies, despite the expansion of western medical systems, the use of non Western medicine has remained a central part of health care.

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Because there are significant differences between Western and Eastern cultures in relation to how people view and approach their disease, the understanding of people’s uses of non Western medicine (CAM) from different cultures is especially important. Very few published studies (Hsin et al., 1996, pp. 127-137; Chiou, 1999, pp. 398-407; Cho, 2000, pp. 123-135) have addressed the use of various treatment options within an Eastern culture and no published interpretive studies have been identified. Furthermore, very little is known about Taiwanese people with cancer and their NWM use.

The purpose of this study is to explore the motivations for Taiwanese patients’ use of NWM and the processes by which people with cancer incorporate NWM into their cancer treatment journey.

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Summary

According to the literature, NWM is widely used by people in both Western and Eastern societies. This chapter has explored the background to the use of what has been defined as CAM in the Western world. It has also considered various different perspectives on the use of such therapies. It has been argued that different views exist between Western and Eastern societies regarding NWM. As such, it has been suggested that people with cancer may make different choices and decisions regarding their treatment and care.

It is important therefore to explore why and how people from various sociocultural contexts use and integrate NWM into their health care. There is a paucity of studies in Eastern literature which explore this issue, especially from a qualitative perspective. This study aims to explore the motivations for patients’ use of NWM and the processes by which Taiwanese people with cancer incorporate non Western medicine into the cancer treatment journey.

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The following chapter presents a discussion of and justification for the methodology of grounded theory which was applied in this study.

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CHAPTER 3 Methodology

This chapter develops the theoretical framework that underpins this study. In so doing, the chapter addresses the theoretical concepts that inform grounded theory and some dilemmas that have arisen in the interpretation and application of those concepts. The intent here is to construct a coherent grounded theory framework that is explicit in its implications and as such seeks to overcome some of the problems inherent to many grounded theory works.

Grounded theory was first developed by Glaser and Strauss in the 1960s and was introduced into nursing education as a distinct research methodology in the 1970s. The work of these authors was grounded in a critique of the dominant tradition of social inquiry that sought to impose “enduring” theoretical propositions on to data in the study of the social world. Glaser and Strauss (1967) argued that this approach, in assuming an priori “fit” between theory and empirical data, was merely “opportunistic” and provided little opportunity for genuine knowledge development (pp.1-3). In so arguing, these authors proposed an approach to social inquiry that 40

focused on the discovery, rather than the testing, of theoretical explanations. Thus “generation” rather than “verification” was the essential rationale for the development of grounded theory.

Although Glaser and Strauss largely avoid any explanation of the theoretical origins of their work, the assumptions that underpin grounded theory clearly derive from the sociological orientation of symbolic interactionism. Hence, it is necessary to address the key tenets of symbolic interactionism in order to provide some background understanding of grounded theory.

Symbolic Interactionism

Symbolic interactionism developed, in large part, as a critique of the biologically based explanations of the social world and the individual. The two most notable contributors to the interactionist body of thought are George Herbert Mead (1863-1931) and Herbert Blumer (1900-1987).

At the start of the twentieth century, Mead was a lecturer in philosophy at the University of Chicago and it was through his work with philosophy students that the 41

basic theoretical tenets of symbolic interactionism were formulated. Subsequently, through the work of theorists such as Blumer, Lindsmith and Becker (Strauss in Mead, 1956, p. xiv), and later Glaser and Strauss, Mead’s influence extended to sociology (Cheek et. al., 1996, p. 113). Mead’s influence on the tradition of sociology is largely through his conceptualisation of the (human) self. Mead (1932) indicated that human beings have selves unlike other animals and further, that the self is constructed through a process and this process establishes the human’s mind (p. 80). Furthermore, he argued that the process was one wherein the human mind and the world are engaged in an ongoing process of interaction and that this process has dimensions both internal and external to individuals (Mead, 1932, p. 180). According to Mead (1956), we “get at” the social process by moving from the outside to the inside “to determine how such experience does arise within the process” (p. 122). In other words, understanding the social process starts with observable activities (or social acts) and moves to the experience (or mind or consciousness) that is not readily observable. The observable activities might include, for example, language. Language serves the observable process of organising the content of experience but it is also part of the process of creating the experience or situation (Mead, 1956, p. 167). This occurs in communication through

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language where the communication from the self and the response creates the social meaning of the context of communication and thus a meaningful world.

This is so, Mead (1932) argued, because human beings have thoughts of themselves and a sense of themselves and the capacity therefore to both communicate with and behave towards themselves. As a consequence, they are able to interact with themselves, including expressing themselves, responding to themselves and addressing themselves again (Blumer, 1969, p. 62). In addition, Mead (1932), and later Blumer (1969), argued that human beings have the ability, through cognition, to stand outside themselves and perceive different perspectives. It is through this process and within the process of social interaction that social meanings are constructed (Mead, 1932, p. 62; Blumer, 1969, p. 62). In other words, the social process is the factor that decides people’s thinking. In Mead’s (1956) words:

The self-conscious human individual…takes or assumes the organized social attitudes of the given social group or community to which he (sic) belongs, toward the social problems of various kinds which confront that group or community at any given time and which arise in connection with the correspondingly different social projects or organized co-operative enterprises in which that group of community as such is engaged: and as an individual participant in these social 43

projects or co-operatives, he (sic) governs his own conduct accordingly (pp. 220-221).

The essential purpose of Blumer’s work was to challenge the premises of the empirical sciences (by which he means the physical and biological sciences) as they were applied to the study of the social world (Blumer, 1954, p. 3). Blumer argued that the “fixed” techniques and experimental procedures characteristic of empirical inquiry isolated or abstracted study phenomena from the “natural social world” and subjected them to inquiry based on preconceived theoretical concepts. The use of specific procedures and predetermined concepts has lead to a singular emphasis on the refinement of the research process to ensure verification (or generalisation) rather than on the empirical world that is the concern of social inquiry. Social theory thus becomes “primarily an interpretation which orders the world into its mould (and) not a studious cultivation of empirical facts to see if the theory fits” (Blumer, 1954, pp. 3-4). The result is a “glaring divorcement” of social theory from the empirical world (Blumer, 1954, p. 3). Yet, Blumer argues, social phenomena and/or processes are not essentially generic and the social world is constantly changing. Thus the process of social change and its distinctive constituents can not be predicted or understood through the empirical method (Hammersely, 1989, pp. 114-115).

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From this starting point Blumer (1969) sought to develop an alternative approach to social inquiry that captured the “meaning” of social processes and the ways in which situations and actions are constructed and reconstructed over time. Drawing foremostly on the work of Mead, Blumer proposed a theoretical exposition of society as a process of human action which, in 1937, he termed “symbolic interactionism” (Blumer, 1969, p. vii, 1, 60).

Blumer (1969) argued that there are two levels of social interaction; the non-symbolic and symbolic. Individuals respond to other’s gestures and actions directly in the former situation but also interpret other’s gestures and actions based on the meaning that is given through interpretation (pp. 65-66).

Thus by symbolic, Blumer (1969) means “the fact that human beings interpret or define each other’s actions instead of merely reacting to each other’s actions” (p.79). In other words, humans construct and define their actions rather than simply respond to the actions of others (Blumer, 1969, p. 91). The individual, then, according to Blumer, is of uppermost importance because the meaning of an object is constructed by the individual’s action rather than stimulated from the world outside. In other words, individuals construct meanings of objects based on their ongoing activity

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(Blumer, 1978, p. 92). As a result, according to Blumer, social reality is an uncertain, accidental and ongoing process (Morrione, 1998, p. 197).

As such, Blumer (1969) argues that the nature of symbolic interactionism possesses three prerequisites. Firstly, human beings behave on the basis of the incidents which affect them. These incidents may include other human beings or physical objects and may happen individually or collectively in human beings. Secondly, the meaning of the incident is able to lead to, or form, the social interaction of human’s behaviour. Thirdly, the way that people deal with the situations they confront is influenced or altered by the meanings of incidents (p. 2). The meanings that a person attributes to an object, therefore, provide the basis for explaining behaviours. These meanings develop in the process of social interaction and within particular settings. Thus, the ways in which people act and construct their world will vary from context to context.

Origins of Grounded Theory

It is clear that grounded theory is fundamentally grounded in symbolic interactionism. The purpose of symbolic interactionism is to elicit an understanding of interactions, responses to interactions and the social processes that these give rise 46

to. Through a process of analysis and explanation or what is called a “digestive process”, different experiences can be compared and transmitted into human’s daily activities (Blumer, 1969, p. 133).

In the application of the interactionist perspective, a researcher seeks to investigate the meanings that constitute and are constituted by interactions with others (Cutcliffe, 2000, p. 1477; Sheldon, 1998, p. 47). “Others” can mean other people, organizations, objects and actions within the situation or a mix of the foregoing elements (Chenitz & Swanson, 1986, p. 5). Similarly, grounded theory seeks to describe and explain human behaviour and to explore the social processes in human interactions (Cutcliffe, 2000, p. 1477). Yet, grounded theory is distinctive in its particular explication of methods for social inquiry. Glaser and Strauss moved beyond the symbolic interactionism of Mead and Blumer in setting down a detailed exposition of what they perceived were procedures essential to the generation of social knowledge. And they brought to grounded theory quite diverse knowledge bases which have shaped both the methods and the controversies characteristic of this methodology.

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Grounded Theory

Prior to their first publication on grounded theory in 1967, Glaser and Strauss collaborated on a qualitative research project which culminated in the publication, in 1965, of the book “Awareness of Dying”. The methods of collection and analysis articulated in that book delineated the embryo of grounded theory and the 1967 publication “The Discovery of Grounded Theory” by Glaser and Strauss provided a systematic explanation of the methodology.

Although both Glaser and Strauss were educated and worked within sociological schools, their knowledge bases differed. Strauss was strongly influenced by the interactionist writings of such theorists as Mead and Blumer while attending the University of Chicago. Glaser, whose ideas were shaped by the works of Paul Lazarsfeld, trained in inductive quantitative sociology at Columbia University (Beck, 1999, p. 206; Eaves, 2001, p. 655; Rennie, 1998, p. 114). Strauss’s exposure to naturalistic or field research informed his emphasis on the necessity of a description and understanding the way of people shape the world in which they live. Glaser attached importance to systematic data collection and analytical procedures and thus systematic techniques and procedures in coding processes for qualitative methods 48

(Eaves, 2001, p. 656). Glaser and Strauss brought both perspectives to the development of grounded theory.

Definition of Grounded Theory

In formulating a definition of their methodological approach, Glaser and Strauss (1967) stated that a grounded theory will:

…fit the situation being researched, and work when put into use. By “fit” we mean that categories must be readily (not forcibly) applicable to and indicated by the data under study; by “work” we mean that they must be meaningfully relevant to and be able to explain the behaviour under study (p. 3).

Several decades later, Strauss and Corbin (1990) noted that:

A grounded theory is one that is inductively derived from the study of the phenomenon it represents. That is, it is discovered, developed, and provisionally verified through systematic data collection and analysis of data pertaining to that phenomenon….One does not begin with a theory,

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then prove. Rather, one begins with an area of study and what is relevant to that area is allowed to emerge (p. 23).

It can be seen from the above that an important concept inherent to grounded theory is that it does not begin with theory. Rather, from generated data researchers distinguish meaningful constructs and thus theory emerges from the data (Streubert & Carpenter, 1999, p. 100). It is argued, therefore, that grounded theory is particularly useful in the investigation of complex areas and behaviours where distinct varieties are yet to be identified (Stern, 1980, p. 20). In other words, the approach is considered useful in exploring phenomena that have not been previously addressed, or where concepts and relationships in particular populations or places are undeveloped or weakly connected (Strauss & Corbin, 1990, p. 37).

The objective of a grounded theory investigation is to discover theoretical explanations and explore human interactions related to particular phenomena (Streubert & Carpenter, 1999, pp. 99-100). Grounded theory is, in the first instance, understood as a social process. Thus investigators endeavour to reveal the social processes (or theory) that people use to deal with circumstances about which they are not aware (Benoliel, 1996, p. 408). In other words, grounded theory has the value

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and ability to explain a theory (that develops from process) that is related to basic sociological activity (Glaser & Strauss, 1967, pp. 5-6).

Despite the detailed approach taken in the seminal work of Glaser and Strauss, an examination of the evolution of grounded theory reveals a range of methodological and conceptual positions that draw on for example, traditional symbolic interactionism, Strauss’s pragmatist theory of action, eclecticism and, more recently, the intellectual movement of postmodernism. The variations in theoretical perspectives point to some conceptual dilemmas inherent in the traditional mode of grounded theory (Annells, 1997, pp. 177-178). A consideration of these points of departure is important in articulating a coherent approach to grounded theory.

Contested Areas in Grounded Theory

There are a number of conceptual issues contested in grounded theory. Differing views prevail over issues such as verification versus generation, theoretical saturation, the relevance of a literature review, interpretation versus truth, full conceptual descriptions versus theoretical codes and theory, the micro versus macro-social world and substantive versus formal theory. 51

Verification versus Generation

Glaser and Strauss wrote in 1965 that their innovative approach to research takes two directions. First, is the discovery of new concepts and hypotheses and second, is the testing of these new concepts or hypotheses within a broad range of contexts (Glaser & Strauss, 1965, p. 261). Similarly, Glaser’s (1965) early work on the constant comparative method of qualitative analysis indicated two expressed functions in qualitative research; the generation of theoretical ideas and theory-testing (p. 436). Therefore, as Hammersely (1989) argues, both Glaser and Strauss were unequivocal about grounded theory as a hypothetic-deductive approach (p. 198).

However, the emphasis in the 1967 work of Glaser and Strauss shifted significantly. In this work it was argued that grounded theory was conceived explicitly as a method to inductively generate theory through comparative analysis (Glaser & Strauss, 1967, p. 21) and thus the inductive analysis must be regarded as a self sufficient approach. Glaser and Strauss argued that theory development involves the identification of sufficient ‘definite’ categories and hypotheses to be verified only in separate quantitative studies when and where appropriate (Glaser & Strauss, 1967, p. 3). Thus 52

the implication is that grounded theory is foremostly concerned with the generation of theory and that verification is optional and posed as a process external to the primary concern of grounded theory. However, an ongoing analytical issue in grounded theory relates to whether the application of the methodology leads to verification or generation. This argument is also related to inductive and deductive concerns regarding grounded theory.

In more recent work, Strauss (1987) has argued that grounded theory includes three different aspects of enquiry; induction, deduction and verification. These are perceived by Strauss to be essential components of the methodology (p. 12). In Strauss’s view, although induction remains the first consideration in grounded theory, deduction is necessary to enable a logical and thorough examination of the data. Moreover, Strauss argues that deduction without verification or verification without deduction means that the inquiry would be incomplete (Strauss, 1987, p. 11-14). As Strauss (1987) notes:

….the theory is not just discovered but verified, because the provisional character of the linkages - of answers and hypotheses concerning them - get checked out during the succeeding phases of inquiry, with new data and new coding

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(p. 17).

Thus, Strauss and Corbin (if belatedly) derived from Dewey’s instrumentalism (an emphasis on the experimental method) to introduce a hypothetico-deductivism into the grounded theory method.

But this occurred not without challenge. Glaser continued to argue strongly that grounded theory is properly only inductive and leads to theory generation (Glaser, 1992, p. 16). Others, such as Rennie (1998), defend Glaser in arguing that verification is an inherently positivist concept and presumes a “theory of truth” (p. 133). Hammersely (1989) also proposes that grounded theory must be inductive rather than deductive because of its underlying premise that grounded theory was not conceived for theory testing (p. 173). An emphasis on flexibility to allow the researcher to find out “what is going on” means that a theory will not be predetermined but will be worked out as the research progresses (Hammersely, 1989, p. 173). However, while rigidly adhering to the view that theory must emerge from the generation of data, Glaser then argues that an inductively produced theory may be empirically tested to prophesy the principles of some deductive research methods (Streubert & Carpenter, 1999, p. 104).

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A key issue central to this debate is the legitimacy of an emergent grounded theory. Glaser in his early writing stated that the constant comparative method was not able to both discover and test theory. Grounded theory data is not coded comprehensively enough to test the theory but only enough to generate and then suggest the theory (Glaser, 1965, p. 438). The implication is that this methodology does not generate theory as such. Glaser (1992) addresses this conceptual issue simply by arguing that grounded theory leads to generation and not verification (p. 67). Grounded theory focuses on generating hypotheses as they appear from the data; the verificational model is not the purpose in grounded theory (Glaser, 1992, p. 67). Yet, this leaves the status of the generated, or ‘suggested’, theory unexplained. Thus, Hammersley (1989) argues that Glaser, in particular, is ambiguous on the issue of verification (p. 198).

The differences in views on methodological procedures have implications for the ways in which the verification and justification of grounded theory are articulated. Some grounded theory studies, for example, focus on theoretical saturation, where new data fit into the categories already contrived (deduction) (Charmaz, 2000, p. 520). In contrast, other researchers define the study as inductive and theory building (induction) (Locke, 1996, p. 243).

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Theoretical Saturation

According to Strauss and Corbin (1998), theoretical saturation is defined as “the point in category development at which no new properties, dimensions, or relationships emerge during analysis” (p. 143). In grounded theory, data is initially collected from a single group and therefore, the researcher may collect data from older groups or return to participants in order to seek potential new categories. When similar situations appear again and again, the researcher is able to indicate that a particular category is saturated (Glaser & Strauss, 1967, p. 61).

However, Glaser and Strauss (1967) also argue that when saturation is reached, the researcher will often find gaps in his/her theory. In this situation, the investigator attempts to maximise the varieties of data in one category, integrate and “dense” the theory and finally rely on the researcher’s theoretical sensitivity (pp. 61-62). But as Glaser and Strauss (1967) had initially determined, saturation may require “dozens and dozens of situations in many diverse groups must be observed and analysed comparatively” (p. 62). Therefore, the process of determining theoretical saturation and the point at which saturation can be claimed is poorly defined.

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The Use of Literature

A literature review has a specific purpose in traditional research and that is to help the researcher understand what has been discovered about the research problem and if gaps exist between reality and literature (Castles, 1987, p. 45; Strauss & Corbin, 1990, p. 49). However, in grounded theory research, the proposed objective is to discover relevant concepts and their interrelationships within specific contexts. Thus it is argued that the imposition of pre-determined categories or knowledge may influence or distort the process of discovery. As Flick (1998) argues, researchers do not want to be controlled by previously developed theoretical propositions which may not be suitable for use in the area under investigation (p. 222).

In light of the above noted tenets of grounded theory, many suggest that researchers should avoid conducting a literature study before data collection and analysis simply because the emerging theory must be grounded in the data (Cutcliffe, 2000, p. 1480). Glaser (1992) clearly argues that the literature review should be eschewed to ensure that the discovery of the researcher is not conceived from pre-empting thoughts. Literature assumes a role in sorting and grounding the data only as the theory emerges (Glaser, 1992, pp. 32-33; Holloway & Wheeler, 2002, p. 166). 57

Nonetheless, a compelling argument points to the necessity for the researcher to obtain some information about the investigation area before generating theoretical propositions (Parry, 1998, pp. 93-94). Thus other theorists argue that appropriate use of previous knowledge is able to realise better the processes that are being observed (Baker, Wuest, & Stern, 1992, p. 1357). From this perspective, a literature review assists in the formulation of research inquiry and is helpful in providing parameters for initial interviews and observations. Furthermore, during the research process, the literature may help an investigator to find examples of similar circumstances and when researchers have finished their data collection and analysis and during the writing stage, the literature can be utilised as a source to confirm their findings (Strauss & Corbin, 1998, p. 44, 51). Therefore, general reading of the literature may help the researcher to identify the issues in the particular area and find any gaps to be filled by utilising grounded theory.

Interpretation versus Truth

A related issue is whether grounded theory research outcomes constitute an interpretation or the ‘truth’. Here again we find important variations in the body of 58

grounded theory work. In their early work, Glaser and Strauss adhered to traditional methodological terms in emphasising the predictive and explanatory powers of grounded theory. Indeed, the authors argued that the primary focus on data, as opposed to the common practice of testing predetermined concepts, would heighten the explanatory power of grounded theory. Yet forty or so years of grounded theory studies suggest that this approach does not produce the kind of generalisable results that its adherents had proposed.

It has since been argued that in exploring the results of grounded theory research, researchers seek only to interpret or approach “the truth”. This is so because the very interaction between the researchers and the worlds they are studying influence the forming process of theory. The extent to which the emerging theory should and is affected by this interaction remains an issue for debate (Cutcliffe, 2000, p. 1479). Indeed, Strauss and Corbin (1990) argue that “reality can not actually be known but is always interpreted” (p. 22). Furthermore, they also assert that a theory can not be seen as some discovered or pre-existing reality “out there”. The “truth” is that “theories are interpretations made from given perspectives as adopted or researched by researchers” (Strauss & Corbin, 1998, p. 171). Nonetheless, judgments still can be made and lead to usefulness and soundness of a theory (Strauss & Corbin, 1998, p.

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171). Thus the “reality” in social enquiry is seen as relative for it is the result of an interpretation or an investigator’s explanation (Annells, 1997, pp. 122-123). Furthermore, “social reality is dynamic but that does not contradict the factuality of social reality” (Lomborg & Kirkevold, 2003, p. 198).

The implication here is that there are many possible alternative interpretations of qualitative data (Corbin, 1998, p. 122). Social reality is interpreted from given viewpoints that are adopted or researched by investigators and are informed by culture, history and a researcher’s attitude (Benoliel, 1996, p. 407). Moreover, in an intellectual process, knowledge or concepts are not dormant. People are undergoing change and those changes may influence people’s goals and social processes and directly or indirectly change their thoughts and behaviours (Benoliel, 1996, p. 416).

In other words, a researcher will not know the realities or indeed if there are realities. What is depicted as a representation or interpretation of reality is dependent upon a complex interplay of factors including the investigator’s point of view. In adopting this view, Annells (1997) suggests that:

…readers of grounded theory research reports need an awareness of the varying views of what is “reality” and how it can be known, as intrinsic to 60

varying modes of the method. There are encoded assumptions and values about the social world within such reports that position us as readers of research (pp. 128-129).

Full Conceptual Descriptions versus Theoretical Codes and Theory

The generating concept of grounded theory requires “theoretical sensitivity” (as Glaser termed it). Theoretical sensitivity combines interpersonal perceptiveness with conceptual thinking, not an importing concept (Wilson, & Hutchinson, 1996, p. 124). Full conceptual descriptions and theoretical codes both have this characteristic. Conceptual descriptions serve to answer the question “what is going on here?” Theoretical codes extend the analysis to “what is going on and how?”

The concepts of “full conceptual description” and “theoretical codes” draw from two conflicting points of view. Glaser argues that there are substantive codes from which then emerge the theoretical codes. In contrast, Strauss and Corbin propose a coding technique which extends to “conditions, contexts and consequences” and which they term a “logic diagram” that will not be influenced as the research moves (Corbin, 1998, p. 126). As a result, full conceptual descriptions are formed.

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Glaser, however, argues that the emphasis of grounded theory must be on “emergence”. Hence, he criticises the Strauss and Corbin approach of a “full conceptual description” which, in Glaser’s view, reflects a “forcing” of data and theory rather than allowing each to appear independently (Eaves, 2001, p. 656). Glaser argues that this method is more accurately termed a conceptual description rather than grounded theory (Benoliel, 1996, p. 415). Moreover, he indicates that Strauss does this without satisfactory reference to their seminal work on grounded theory (Melia, 1996, p. 369). In Glaser’s (1992) words:

Full conceptual description is a wholly different method from grounded theory. It grew up from the same research as grounded theory, but at the hands of a different research analyst. It is a “new” conceptual method, uniquely suited to qualitative research, that simply uses the grounded theory name…. (p. 123).

These two contrasting positions have given impetus to substantial arguments over grounded theory research.

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Micro versus Macro-Social World

A related proposition in grounded theory research is that investigations are usually confined to specific contexts or certain cases (micro-social world).

If researchers

seek to generalise the findings (macro-social world), the contextual link needs to be abandoned in order to obtain findings that are valid independently of and outside certain contexts (Flick, 1998, pp. 233-234). However, this poses a dilemma.

A consideration of macro-conditions will arguably increase an understanding of the phenomenon of interest (Rennie, 1998, p. 132). Nevertheless, the traditional mode of grounded theory research does not address this dimension. Indeed, an acknowledged criticism of grounded theory is that it constitutes a study of the micro-social world and it may therefore include a distortion of macro-conditions (Rennie, 1998, p. 132). In other words, grounded theory studies may not show readers the whole picture.

Some authors claim the existence of two grounded theory approaches that focus either on the micro-social or the macro-social world. The classic grounded theory method concentrates at the micro level (micro-social world) of analysis. In contrast,

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Strauss and Corbin’s approach seeks to combine the micro and macro levels (micro-social world and macro-social world) of analysis (Annells, 1997, p. 125).

However, a conceptual distinction between these two levels of research can not be reconciled within an inductive approach that gives primacy to data. The Strauss and Corbin remedy is to argue, as noted, for both inductive and deductive phases in research. This involves bringing to the research analysis explanatory factors that are not immediately related to the phenomenon under study. Arguably this strengthens the grounded theory project. But perhaps Glaser (1992) is then justified in arguing that Strauss and Corbin have diverged from the “focus and criteria of grounded theory as it was originally intended and written” (p. 119).

Substantive versus Formal Theory

As Strauss and Corbin (1994) argue, the essential purpose of grounded theory is to further develop an effective theory (p. 278). An effective theory in their terms means:

fit of substantive grounded theories in terms of what the researcher has actually seen and/or heard, and later more will be said about the

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relevance of theory in its application (Strauss and Corbin, 1994, p. 278).

In addition, an effective theory is not only able to trace back to the data that is its source but also adapt to the feature of “striking fluidity”. An effective theory may be seen as “systematic statements of plausible relationships” (Strauss & Corbin, 1994, pp. 278-279). Strauss and Corbin also suggest that the role of interpretation in grounded theory is no less important than theory creation and as such theory should only be grounded in the “interplay with data and developed through the course of actual research” (Strauss & Corbin, 1994, p. 278).

The issue then is whether grounded theory produces substantive theory or formal theory. Glaser and Strauss (1967) see both theories as “middle range”, or in other words, “minor working hypotheses” or “all-inclusive” theories of every day life phenomena (pp. 32-33). Furthermore, grounded theory is designed to produce “conceptually dense” theory that articulates the relationships within a theoretical framework. The relationships are posed only as propositions and although theory can be presented, it is considered only momentary.

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However, Glaser (1978) argues that grounded theory researchers should construct a theory that is readable and modifiable. Furthermore, they should highlight the points in the writing, because most readers may read the writing as “a fixed conceptual description, not explanation” (p. 129).

Debate surrounding these issues will continue and as such there is no one definitive position, the position stands with researchers or readers.

Methodological Approach

In addressing the conceptual dilemmas in developing a grounded theory study, it is clear that the researcher’s perspective is an important factor in both shaping and conducting a research study. The framework of grounded theory applied in this study draws predominantly on the works of Strauss and Corbin (1990) and this framework is referred to here as a reconceptualisation of grounded theory.

The reformed framework emphasises the following methodological and conceptual points pertinent to this study. The first of these is that grounded theory leads to both the generation and verification of theoretical propositions and as such incorporates 66

both inductive and deductive elements. The second conceptual issue relates to saturation. The concept of saturation in this study refers not to the phase of data collection, but to the analysis phase and the point at which no new dimensions are discovered in the analytical process. Third, a general literature review may be undertaken, as was the case in this research, prior to data collection in order to enhance an understanding of the study issue. However, the knowledge derived from a literature review should not distort data analysis. Fourth, reality is understood in this study as a relative concept and thus hard to achieve or may not be known. In other words, reality is interpreted. A further and essential conceptual issue particularly pertinent to the study is the recognition of the interconnectedness of the micro and macro social worlds. Finally, a formal theory may not be the outcome of a grounded theory study. Rather, the research has suggested to produce a “conceptually dense” theory may be produced and posed as propositions regarding the issue that has been studied.

This framework presents a coherent methodological approach to grounded theory inquiry and one that centres on the discovery of a conceptually “dense” theoretical explanation of the issue under study.

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Summary

This chapter has addressed both the theoretical tenets underlying grounded theory and some conceptual dilemmas that have emerged in the development of the methodology. The discussion has included explanations of symbolic interactionism (as it underpins grounded theory), the origins of grounded theory and a historical review of this methodology and related conceptual issues. On the basis of this analysis, the key conceptional points that inform this study have been explicated.

The following chapter provides a detailed rationale for the methods of grounded theory as they were employed in the study.

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CHAPTER 4 Methods

This chapter addresses the methods utilised in this study. Although the following presentation of methods assumes a linear form the application of methods is premised on an understanding of grounded theory as a process rather than constituting discrete techniques. Grounded theory method, as a process, seeks to explicate a connection from qualitative data to theoretical propositions. It is, therefore, the conceptual relationship between the methods, not the order in which they are employed, that enables a systematic and cumulative construction of an analysis. In this sense, the process is almost in the data and naturally emerges from the data analysis if the researcher follows the steps of grounded theory analysis (Stern, 1980, p. 21; Strauss & Corbin, 1990, pp. 143-144).

The methods outlined include purposeful and theoretical sampling, data collection, the use of memos, data analysis and validity in translation of interview data. In addition the role of the researcher, the ethical dimensions of the study and validity and reliability of this study are addressed. 69

The Elements of Grounded Theory

Sample Selection (Participants)

The study employed both purposeful and theoretical sampling. Sampling strategies employed by qualitative researchers are used to obtain rich and in-depth information from participants (Patton, 1990, p. 169). Because samples (participants) are generally selected for a particular purpose the term “purposeful” or “purposive” sampling is used. Here participants were chosen because they had experience related to the phenomena under study and were able to share these experiences to the researcher.

As the research analysis developed initial concepts or categories, theoretical sampling entered the research process. Strauss and Corbin (1998) define theoretical sampling as “sampling on the basis of emerging concepts, with the aim being to explore the dimensional range or varied conditions along which the properties of concepts vary” (p. 73). Theoretical sampling is thus guided by significant ideas that emerge from the data. New things emerge from the data that should draw analytic

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attention. If something seems present but not articulated, additional data are requisite (Clarke, 2003, p. 561). Theoretical sampling can not be pre-determined and continues throughout a grounded theory study. Thus initial data collection and analysis directs the process of enquiry and, in turn, the direction of theoretical sampling (Cutcliffe, 2000, p. 1477; Holloway & Wheeler, 2002, p. 157). In other words, theoretical sampling reflects “the emerging theory (which) controls the research process throughout” (Alvesson & Sköldberg, 2000, p. 11).

Fourteen participants constituted the initial sample in this study. This sample size allowed for a depth and range of data to facilitate early analysis. Using the principle of theoretical sampling, an initial number of participants was increased dependent upon the emergent data analysis (Streubert & Carpenter, 1999, p. 106). When the data collected was deemed rich enough to explore the different dimensions of the research, then the sample size was judged appropriate. Too few participants would have resulted in insufficient data and too many participants may have lead to data redundancy (Berry, 1993, p. 906). On this basis, the final sample size for this study was twenty four.

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The twenty four participants were recruited from two health care settings. The participants were chosen from patients who were hospitalised in one medical centre hospital (the largest) and one regional hospital (the second largest) in Taiwan. The nursing department in the respective hospitals received a letter from the researcher which included the research proposal, a participant information sheet and a consent form. These documents were also submitted to the relevant hospital committees in seeking approval for the research.

Participants were recruited from those who were hospitalised in cancer wards and those cancer outpatients who were cared for by the home care department in the hospitals. The criteria for participant selection were as follows:

∗ First, participants have been diagnosed with cancer; ∗ Second, participants had used at least one type of non Western medicine during their cancer treatment journey for any length of time; and ∗ Third, the participant’s health status was such that she/he could participate fully and without adverse effects in the interview process.

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In the first instance, the researcher communicated fully with nursing and medical staff in seeking advice on and access to patients who may be potential research participants. The head nurse in the ward and the head of the home care department were the first persons to mediate the process and nurses in the ward identified appropriate patients. The researcher then approached individual patients to explain the research process and objectives and to identify those who met the criteria for the research. Potential participants received a letter, including an information sheet and consent form in Chinese (see Appendix I and Appendix II for both English and Chinese format) that sought their consent to be involved in the research project. All but one participant could read. For the participant who could not read, the information sheet and consent form were explained by a nurse in the ward after which the participant signed the consent form.

Participant Demographics

The sample of twenty four participants consisted of thirteen males and eleven females. The age distribution is presented in Table 1. The sample had a mean age of 45.7 years with a range from 16 to 69 years. With regard to marital status, most (18/24) were married, with only four being single. Two participants were widowed. 73

Regarding religious belief, the majority of participants (21/24) embraced Eastern based religions, such as, Buddhism, Taoism and folk beliefs. One participant was ambivalent about religion and two others held no religious beliefs. The level of education of participants is shown in Table 2. The majority of participants (10/24) have an education level of senior high school.

Table 3 . Age distribution of participants

Age

Number of participants

20 years or under

1

21-30 yrs

3

31-40 yrs

6

41-50 yrs

5

51-60 yrs

6

61 yrs and over

3

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Table 4. Educational level of participants

Highest level of education

Number of participants

Primary school

7

Junior high school

4

Senior high school (including junior college)

10

University

2

Higher than university

1

The twenty four participants included in this study are identified through family names (pseudonyms) such as Mr. Zhao or Ms. Qian. These family names were carefully chosen from “one hundred family names” (百家姓) so that they do not reveal the participant identity in order to protect confidentiality and anonymity.

Interview Approach

The purpose of any form of interviewing is to retrieve data required for the research project. Yet, interviewing styles differ significantly in accordance with the objectives of the research and the chosen methodology. Although interviewing in qualitative

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inquiry is generally described as semi-structured or informal, the degree of structure varies. For example, Keats (2000) argues that the researcher needs to ensure that the question format does not radically change for different participants in order to avoid bias and so the data can be codified in a certain way and be analysed effectively (pp. 19-20). However, in grounded theory it is important that the interview is flexible to ensure that data generation is not constrained by the structure of questions. As such, the grounded theory interview should be seen as a process of utilising broad and open modes of gathering respondents’ perspectives on views of the particular phenomena (Wimpenny & Gass, 2000, p. 1490).

Thus, in-depth interviews were used in this study to facilitate a broad articulation of viewpoints that would not occur within a more structured interview situation (Flick, 1998, p. 76). The purpose of the in-depth interview was to elucidate an understanding of participants’ experiences and the meanings that they construct from those experiences (Seidman, 1998, p. 3). In-depth interviews were more likely to obtain data that reflect the in-process nature and the complexity of the meanings or interpretations that researchers intend to explore (Rice & Ezzy, 1999, p. 53).

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The advantages of this approach were first, that it gave the researcher some manoeuverability in pursuing both the obvious and the unexpected dimensions of a research topic. Second, a flexible and unstructured interview permitted the researcher to enter the subject area in a natural way. Third, this style of interview allowed the researcher to know the participants as people and to see how they perceive their world and eventually, to see the incidents the way they do (Chenitz, 1986, p. 82).

Furthermore, in order to communicate effectively, an interviewer’s language should be understood by the participants and interviews must be conducted in the participants’ language (Fontana & Frey, 2000, pp. 654-655). As such, Mandarin, Taiwanese or a mix of two languages were used in the interview process in this study. Gaining trust and establishing rapport were critical in the conduct of the interviews (Fontana & Frey, 2000, p. 655).

In addition, during the interview the researcher considered first, what was said and what it meant; and second, how and when the researcher posed the next question. A third consideration was determining when the full pattern of incidents had been discussed and the pattern of the interview had been utilised in the interview process. Finally, the researcher observed the participants for any signs of disinterest,

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discomfort, or on the other hand, excitement or interest (Sullivan in Chenitz, 1986, p. 83).

Some open-ended and pre-determined questions were posed at the outset for the purpose of determining the parameters of communication and to optimise the interview time. However, the on going data analysis characteristic of grounded theory, gave rise to what Strauss (1987) refers to as “momentary” theory and categories (emerging from on going data analysis) that changed the direction of inquiry (pp. 26-27).

One to one interview

The method of data collection was the one to one in-depth interview, with a few exceptions where family were present. Interviews ranged from thirty to seventy minutes in length. Each interview took place in a private environment and one agreed upon by the participant. Where participants were hospitalised, the interviews were conducted in a participant’s room or, where appropriate, in a separate meeting room in the hospital. For those participants who were outpatients, the interviews were arranged at either their homes or, by mutual agreement, at alternative settings. 78

Data Collection

For data collection an interview theme list was used to enable the researcher to probe themes without leading the discussion. It is necessary to note that qualitative approaches determine to understand a specific phenomenon from the perspective of the people who are experiencing or have experienced that particular phenomenon (Streubert-Speziale & Carpenter, 2003, p. 19; Woodgate, 2000, p. 194).

The interview questions in this study were guided from an interview theme list and began with an open question such as: “Could you describe your history of using non Western medicine?” This question was followed by a series of open questions (see Appendix III). As noted, however, in grounded theory ongoing analysis may change the direction of inquiry. As such, these questions served as a guide only, as interviewer responses and additional questions were directed by the participants’ responses.

In this study, the opening and guiding question was broadened in the second stage of interviews in order to engage with the whole process of using NWM among 79

Taiwanese cancer patients. The opening question then became “Could you describe your cancer journey?”

The Utilisation of Memos

Researcher memos are an important data source in grounded theory. Memos are not traditional tools of communication but a special form of written word that reflect the researcher’s ongoing speculation of the data. The writing of memos starts with the initial stages of research and continues through the research process. Thus, memos are an important source of conceptual data in the sense that they help the researcher to draw relationships among the data (Strauss & Corbin, 1998, pp. 217-218).

Although memos may appear as rough notes at the outset, more data may change, support or correct initial notes. The emergent concepts then become more dense and refined as the research progresses (Strauss & Corbin, 1998, p. 218). The writing of detailed and descriptive memos also ensures some transparency in the research process in reflecting the researcher’s investments in his/her thinking (Martin & Turner, 1986, p. 145). Furthermore, Corbin and Strauss (1990) also argue that if the researcher skips the memo procedure and simply moves from coding to writing, 80

some conceptual details may be underdeveloped. As such, this may result in a less satisfactory integrated data analysis (p. 10).

In this study, memos were utilised through out the whole research process and particularly as an adjunct to coding. The researcher wrote memos in both Chinese and English. At each level of coding these memos assisted in the data analysis process and stimulated the researcher’s thinking. For example, the researcher noted that, in coming to use NWM, much information was sourced through word of mouth from family and friends. This emerged as an important analytical point particularly as it contrasted with the use of western medicine for the participants.

Data Analysis

The methods used in data analysis were based on the grounded theory processes outlined by Strauss and Corbin (1990) and included the levels of open, axial and selective coding (p. 58). While presented in a given sequence below it is noted that these steps in analysis did not occur in a linear fashion. In other words, the researcher continually moved back and forward between different levels of coding in order to thoroughly analyse and compare the data. 81

Most qualitative studies are presented in a discursive way with thick conceptual and descriptive writing (Glaser & Strauss, 1967, pp. 31-32; Strauss, 1987, pp. 263-264; Strauss & Corbin, 1994, p. 278). Two important features of the analytical process and central to this study were theoretical sensitivity and comparative analysis.

Theoretical Sensitivity

The term “theoretical sensitivity” is associated with grounded theory and is defined as “a personal quality of the researcher” or how the researcher interprets the meaning of data and minor differences among data (Strauss & Corbin, 1990, p. 41).

Glaser (1978) suggests that the way to ensure theoretical sensitivity is to enter a research environment with few preconceived opinions or ideas and particularly without prior hypotheses. In so doing, the researcher is able to both maintain a sensitivity towards the data and to understand what is happening without being influenced by pre-existing biases or hypotheses. This allows the researcher to detect what is actually going on (pp. 2-3). Strauss and Corbin (1990) assert that theoretical sensitivity may be drawn from a range of sources including literature, professional experiences and personal experiences (pp. 42-43). In this study, as noted in the 82

previous chapter, the use of literature was integral to all phases of data analysis in validating the emergent interpretations.

This research sought to maintain a balance between those sources and the discovery of theoretical propositions. In so doing, the researcher drew on the conceptualisation of the process by Strauss and Corbin (1990). First there was an endeavour to step back and ask “what is going on here?”. Second, the researcher sought to assume a sceptical attitude towards all factors of the research including for example, the emergent categories, the literature or questions about the data. These were all seen as provisional until they are supported by actual data. Moreover, it was necessary to follow the research procedures. The data collection and analytic procedures were designed for grounded theory to give rigour to a study. The intent was to prevent the researcher from imposing bias on the research by examining assumptions that may come from unrealistic readings of the data (pp. 44-46).

In this study, the researcher did the interviews and data analysis at the same time and constantly asked herself “what is going on here?” Here theoretical sensitivity was enhanced through an ongoing process of comparing data with, and grounding data in the literature.

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Comparative Analysis

Comparative analysis was an important technique adopted in the study in order to enhance theoretical sensitivity. It required the asking of questions and making comparisons (Strauss & Corbin, 1998, p. 73). Through systematic comparison with two or more phenomena, the researcher may sensitise properties and dimensions that are yet to be found. Strauss and Corbin (1998) note that the comparisons may come from either the literature or the researcher’s experiences (pp. 87-88).

In addition, it is important to compare different categories. In comparing different and similar concepts, new dimensions may emerge to the investigator or reveal already existing dimensions that the researcher has not yet identified (Strauss & Corbin, 1998, p. 94). As Strauss and Corbin (1998) state, theoretical comparisons may offer some thoughts on theoretical sampling in order to seek out variation (p. 94).

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Open Coding

Open coding is defined by Strauss and Corbin (1998) as “the analytic process through which concepts are identified and their properties and dimensions are discovered in data” (p. 101). Open coding of the interview transcripts, as the first step in analysis, involves breaking down, examining and categorising data by labelling the phenomena that emerges from the data (Strauss & Corbin, 1990, p. 63; Strauss & Corbin, 1997, p. 39; Sheldon, 1998, pp. 47-48).

Strauss (1987) describes open coding as “vivo codes” or codes that seek to explain, through processes or behaviours, how the problems are resolved (p. 33). There are two properties of vivo codes; “analytic usefulness and imagery”. These codes may consist of words or phrases that directly reflect a participant’s description of a particular phenomenon (Holloway & Wheeler, 2002, p. 158; Strauss, 1987, p. 33). Therefore, line-by-line analysis in vivo coding was the defining feature of open coding and to be methodologically effective had to be exhaustive. This process is time consuming simply because the codes are drawn directly from the data and not from preconceived concepts or ideas which may shape the formulation of codes (Eaves, 2001, p. 658; Holloway & Wheeler, 2002, p. 158). 85

To achieve this, the researcher read through the transcripts carefully and used words as they appeared in the interviews to reflect concepts, issues and perceptions that arose. This is the descriptive phase of analysis whereby the data is reduced to concrete and representative concepts. For example, in the open coding phase of this study, numerous codes were drawn from the transcripts such as “did a special pray”, “did something bad in the previous life” and “can’t say it does not exist”. All these codes then entered the next phase of coding.

Axial Coding

The second phase of analysis involves connecting categories and is referred to as theoretical or axial coding. The definition of axial coding is:

the process of relating categories to their subcategories and is termed “axial” because coding occurs around the axis of a category, linking categories at the level of properties and dimensions (Strauss & Corbin, 1998, p. 123).

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Thus the purpose of axial coding is to bring together concepts to form categories that are obviously connected (Strauss & Corbin, 1990, p. 97). The construction of distinct categories, each of which constitutes obviously linked codes, allows for categories (and therefore codes) to be compared to one another and attached to a particular phenomenon (Eaves, 2001, p. 659).

During this stage, the researcher sought to connect the existing categories and to draw possible relationships between them. These relationships were written into existing memos and at times constructed in diagrammatic form to see where gaps may have existed. Thus, this coding phase involved two levels of analysis. The first, as Strauss and Corbin (1998) advise, was the use of exact words or phrases that appeared in the data and the second involved the researcher’s conceptualisation of these data extracts (p. 126). A significant feature of axial coding is the movement between inductive and deductive interpretation. Here, the researcher induced “what is going on” from the data and deduced through a comparison of categories and relevant literature. In other words, the researcher sought to validate the interpretation of data through a comparative examination of related bodies of knowledge (Strauss & Corbin, 1998, pp. 136-137).

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In this study, the numerous codes from open coding were further interpreted to produce broad (inclusive) themes and related sub themes. An example of a broad theme is “philosophical beliefs” which incorporates the sub-themes of traditional Chinese philosophy, religious practices and Chinese proverbs and self destiny.

Selective Coding (Core Category)

The third and most abstract level of analysis is termed selective coding. At this level of coding, the researcher constructs a core category that links all other categories. Thus, selective coding is referred to as “the process of integrating and refining the theory” (Strauss & Corbin, 1998, p. 143). The function of the core category is to explain the whole story and to reflect the different dimensional levels of categories and their interrelationships. In other words, a core category should have considerable variation among different subcategories (Strauss & Corbin, 1990, pp. 117-118; Strauss & Corbin, 1998, p. 146).

At this point of the analysis, the researcher is able to create a conditional matrix which constitutes the basic framework of the emergent theory. The core category is able to lead to the discovery of what Strauss and Corbin term a basic social process 88

(BSP). Essentially, a core category and basic social process are similar as both need to fit the properties of change and movement over time (Eaves, 2001, p. 659; Glaser, 1978, pp. 96-97).

The conduct of further interviews may be necessary following one or all levels of coding to further explore and refine categories. This step, which reflects theoretical sampling, will not only test the credibility of the data but will reveal and address any gaps that the researcher needs to fill (Strauss & Corbin, 1997, p. 39; Strauss & Corbin, 1990, p. 192). Thus the process of analysis is a recursive process, which means it may move back and forth between the different levels of coding (Strauss & Corbin, 1990, pp. 117-118).

In this study, the interviews were divided into two stages. Fourteen interviews were conducted during the first stage. The researcher then concentrated on data analysis of those interview transcripts and identified themes or categories that needed further exploration. The following ten interviews were conducted with the purpose of filling conceptual gaps and producing further themes.

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To conclude, the process of data analysis applied in this study included the following elements. First, the researcher interpreted vivo material and articulated concepts that directly reflected the data. Second, the investigator examined the relationships among the different concepts and categories and attempted to identify major categories. Moreover, throughout this process, the analytical process continued to engage with methodological issues (Charmaz, 1983, pp. 114-115).

The core category that emerged from this study is “taken for grantedness”. The core category connects the two main categories identified in the axial coding process. These categories are philosophical beliefs (religious practices as one of its subcategories) and social relationships.

Validity in Translation of Interview Data

Human beings utilise complex communication approaches to raise ideas and the meanings of ideas are transmitted and created through language. People also respond to the meaning of things through symbols (Gusfield, 2003, pp. 123-124). In addition, human actions and interactions occur through linguistic exchange. By using numerous and diverse expressions, meanings and situations are transmitted through 90

language (Gusfield, 2003, p. 124). The languages of the interviews conducted in this study were in Mandarin and Taiwanese or a combination of both. Prior to each interview, the researcher determined which language the participant used. During the interview, the researcher utilised the elected language to interview the participant. If the participant switched language in the interview process, either from Mandarin to Taiwanese, or Taiwanese to Mandarin, the researcher followed suit in order to ensure clarity of meaning.

Therefore, the interviews were conducted in either Mandarin or Taiwanese, or in a combination of both. The transcriptions were written in Chinese. It is important to note, however, that some Taiwanese words do not translate readily into Chinese. In such cases, the researcher would write the pronunciation of those words in Chinese characters with the Chinese translation in brackets.

The interview transcripts then were analysed in Chinese by the researcher. However, the researcher also recorded the key themes in English during each coding process. Although the processes of translation were time consuming, the conduct of interviews in the participants’ first language was necessary to produce authentic data (Esposito, 2001, p. 574).

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At the commencement of data translation in this study, only selected quotes were initially translated into English. When translating these selected quotes, the researcher placed to one side the original Chinese transcripts and to the other side, the key themes of those original quotes translated into English. In addition, the researcher had these selected quotes translated in English as far as practicable in their entirety. If doubts arose about key themes in the selected quotes, which were written in English, these were verified by re-examining the original Chinese transcripts. Sometimes, whole quotes in Chinese are not completely translated into English due to their length and to avoid redundancy. The researcher used several dots to indicate this situation. Because the researcher is a native speaker of Mandarin and Taiwanese, she was able to immerse herself in the actual words utilised by the participants. In this way, the process of translation was considered as transparent as possible.

With regards to the translation process, Nelson McDermott and Palchances (1994) state that it is difficult to translate data when two languages are so dissimilar in grammatical structure (p. 113). Thus, the challenges that emerge in data translation when doing qualitative research include different sentence structure and untranslatability (Wang et al., 2006, p. 179). It is particularly true when it comes to

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Chinese. For example, the Chinese language does not have tenses. Thus, when the researcher translated quotes into English, the researcher used different tenses depending upon the meaning that the participant was seeking to impart. Furthermore, different Chinese utterances may lead to only one English translation. In addition, there are, at times, no subjects and verbs in colloquial Mandarin and Taiwanese. In order to make sense in English, the subject and verb were entered in brackets in the English translation. These issues may contribute to translation complexity when the Chinese data are translated into English, and this may have implications for the data quality (Twinn, 1998, p. 657).

There are further issues regarding translation which may affect the quality of the data. Firstly, at times there are no exact equivalent words in the target language. The challenge of searching for suitable English words to express and capture the meaning of Chinese data was a permanent issue throughout the data translation (Twinn, 1997, pp. 420-421; Twinn, 1998, p. 657). Secondly, during the interviews, sometimes colloquial Mandarin and Taiwanese were used. These situations raised a question about the extent to which the English translation of data truly reflected the experiences of the participants (Twinn, 1998, p. 657).

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In light of the above, the researcher adhered to the following principles regarding data translation in the study. Firstly, the researcher undertook the translations with the objective of reaching the meaning closest as possible both to the source (Chinese) and to the target language (English). However, not every concept could be translated and in such cases, meaning-based translations were used rather than word-for-word translations (Esposito, 2001, p. 572).

Secondly, any ambiguities in meanings of words were noted in the data analysis and in the subsequent write-up of the results of analysis. Further, both English translations (meaning-based) and original Chinese characters, if indicated, were included in the text of the results discussion. In addition, where certain Chinese expressions or concepts do not appear in the English language, the researcher used pronunciation translation and put footnotes to explain the concepts and meanings. In so doing, the impact on analysis of differences between the two languages was minimised.

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The Role of the Researcher

Researchers bring their experiences and knowledge to studies and this can enhance an understanding of the issues (Streubert & Carpenter, 1999, p. 106). The researcher’s perspective may also influence the questions to be asked; the researcher’s own experiences, values, and priority may lead to sensitising the thoughts of the researcher and all of these may be affected by a school of thought or a philosophical stance (Charmaz, 1990, p. 1165; Pidgeon, 1996, p. 77). When interviews are conducted, researchers attempt to distance themselves from their experiences and to assume an impartial mindset. Yet, as Corbin and Strauss (1990) argue, the researcher's ability to “maintain analytical distance” needs to be combined with a capacity to draw on past experiences and theoretical knowledge in interpreting data (p. 18). The role of the researcher in this study was shaped by past experiences in oncological nursing and accumulated knowledge of the theoretical groundings of interpretive inquiry.

In addition, it is also the researcher’s responsibility to maintain the anonymity of participants in studies of this type. Interviewees may not want information about themselves to be recognised in the public domain (Behi & Nolan, 1995, p. 712). 95

During the research process, the researcher engaged in frequent discussions with supervisors, or one or two colleague(s), about the data transcripts. However, to ensure anonymity no names were identified in these situations.

Ethical Implications

Researchers have a responsibility to ensure that the rights of participants are protected. In this research, participants may have felt that they had diminished autonomy because of their location within the health care system. The most accepted way to ensure the dignity and autonomy of participants is through the use of fully informed

consent.

Informed

consent

involves

disclosure

of

information,

comprehension, and voluntarism, and competence in the decision to participate or not participate.

Participants received a written information sheet and consent form in Chinese (see Appendix I and Appendix II for both English and Chinese format). Prior to the interview, written consent was obtained from the participants. During the interview, it was possible that participants might recall some unpleasant memories or 96

experiences. If participants were to experience any distress as a result of participation in this project, they were to be offered the opportunity to contact a hospital counselling service on (04) 2205 2121-4252 (A Hospital) or (04) 2662 5111-2152 (B Hospital) for assistance, free of charge. This did not occur throughout this project. Full information about the purpose of this study and the topic to be discussed was explained prior to the interview in the participant’s most familiar language. Furthermore, participants were informed that they were free to withdraw at any time from the research, without comment or penalty and without endangering their relationship with the researcher or the hospital.

In addition, it is also the researcher’s responsibility to maintain the anonymity of participants in studies of this type. Although the findings of this study may be published, no names or information which could identify any individual or organisation will be recorded. Furthermore, the tapes will be erased after safe keeping for a certain period (5 years). Only the researcher and her research supervisors will have access to this information, so that the anonymity of the participants can be assured.

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Validity and Reliability of This Study

The issues of validity, credibility and reliability are as relevant to qualitative research as any other research. However, it is a challenge to develop validity standards for qualitative research because it is not only necessary to integrate rigour and subjectivity but also to ensure creativity (to enhance creative findings and to challenge traditional thinking) (Whittemore, Chase, & Mandle, 2001, p. 522). Furthermore, the purpose of qualitative research is to seek a depth of understanding in order to elicit the subtle nuances in life experiences (Ambert et al., 1995, p. 880).

Detailed description constitutes evidence for validation. This refers to both the transparency of the research process and the presentation of research findings. At a fundamental level, validity is judged on the extent to which a description is detailed enough “for the meaning or context of interpretation to be visible or apparent” (Burns, 1989, p. 48; Popay et al., 1998, p. 345). As Ambert et al. (1995) assert:

“qualitative work should vividly colour in the meanings, motivations, and details of what quantitative research conveys only in broader aggregates” (p. 885).

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However, as Marshall (1990) argues, a researcher makes a decision on which study is more valid than another and whose biases are more correct and thus “(e)valuating the goodness and value of research requires a judgement call” (p. 191).

Maxwell (1992) also argues that validity is not born with a particular method, but is connected to the data or conclusions that are utilised for specific contexts for particular purposes (p. 284). In other words, methods provide the vehicle for obtaining evidence to support validity (Maxwell, 1996, p. 87).

Other authors point to the potentially conflicting objectives of ensuring creativity within the research process and demonstrating rigour in data collection and analysis. This may present an enduring problem within qualitative research. As Patton (1990) argues, it is important that qualitative research is highly creative as well as analytically distinct and rigorous (p. 462). Thus, researchers need to answer the following questions. Do the findings explain the experiences of interviewees or the whole context in a reliable way? Are the interpretations shown in a trustworthy way and reveal some truth external to the researcher’s own experience? Does the interpretation fit what has been described by participants? (Whittemore, Chase, & Mandle, 2001, p. 529).

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Theoretical sampling utilised in grounded theory attempts to address the questions posed above. Further, it also makes various phenomena understood and tests developing categories which are found in the particular settings. This is significant in establishing the validity of data in qualitative research (Maxwell, 1992, p. 293). In addition, although generalisation is a difficult concept in qualitative research, study findings should also fit into other situations outside the study contexts (Sandelowski, 1986, p. 32).

Furthermore, to ensure validity, each sampling criteria, data collection, analysis techniques, and procedures should be clearly delineated (Whittemore, Chase, & Mandle, 2001, p. 524). Open inquiry, reflection and critical analysis are all aspects of inquiry that lead to validity in qualitative research (Marshall, 1990, p. 192).

Researchers who use grounded theory as a methodology may attempt to elaborate, generate or test a theory, or as relevant to this research, a substantive category. Hence, there are three points investigators need to address in order to validate this kind of research. First, the adequacy of the research process needs to be judged, because it may affect the substantive category which is being tested or elaborated

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(Strauss & Corbin, 1990, p. 252). A second point of validation is determining the usefulness of the substantive category. The substantive category needs to be well integrated, relevant to the question and must justify the major variation in the phenomenon or process that has been studied (Baker, et al., 1992, p. 1359).

Finally, the substantive category (core categories) needs to have “fit”, and “work”. Fit means that all categories must be clearly evident in the data. Moreover, the theoretical proposition must have relevance to the participant group and practice group. To work, a theoretical proposition should also explain what has happened, describe what is happening and predict what will happen (Baker, et al., 1992, pp. 1358-1359; Cutcliffe & McKenna, 1999, pp. 376-377; Glaser & Strauss, 1967, p. 3). As Lomborg and Kirkevold (2003) argue:

“What we are looking for is a position that simultaneously acknowledges the human constructed nature of social reality and retains the objective character of this very same social area” (p. 197).

In this study, the research process can claim validity and reliability as a result of the following steps. First, there was a clear understanding grounded theory methodology and methods prior to the commencement of the study. This understanding is 101

demonstrated in the application of the theoretical tenets of grounded theory to each phase of the study. Second, the substantive category, the core category (“taken for grantedness”), in this study directly informs the research purpose which was to determine how and why Taiwanese people with cancer are using NWM. Furthermore, the substantive category or core category is relevant to the participant group in this study and this is demonstrated in the data analysis.

Summary

This chapter has addressed the methods that were utilised in this study and the range of strategies that were adopted to ensure both ethical and methodological rigour. These include how participants were recruited, interviews were approached, and data were analysed and the utilisation of memos. In addition, validity in translation of interview data, the role of the researcher, ethical implications and validity and reliability of this study have also been explicated.

The following chapters address the findings and analysis in this study. These are presented in three chapters, the first of which addresses “the context” of decision making of philosophical beliefs and social practices. 102

CHAPTER 5 Incorporating NWM: The Taiwanese Context

Studies indicate that more than 40% of people world wide use complementary and alternative medicines (Astin, 1998; Eisenberg, 1998 & Eisenberg, 1993), either separately from, or combined with, conventional care (Robinson & McGrail, 2004, p. 90). It is further estimated that approximately 75.5 % of the Taiwanese population use non Western medicine to treat diseases or alleviate symptoms (Lew-Ting, 2005, p. 2112). In this study, decision making that brings Taiwanese people with cancer to use non Western medicine (NWM) emerges as a complex and multi-faceted process.

In applying the theoretical premises of symbolic interaction, this chapter addresses the patterns of use of NWM and Western medicine of the study participants and how they came to integrate both forms of therapy into their cancer treatment regimes. As Blumer (1969) argues, society as a whole may be viewed as symbolic interaction (p. 78). Consistent with this premise, the study of human life and social action considers the realm of life under study as a dynamic process whereby participants give meaning to the actions of others and, as a consequence, define and interpret their 103

own actions. In other words, people construct their actions through an interpretation of the contexts within which they live. Interaction takes place between human beings and these interactions are mediated by symbols, by interpretation, or by determining other’s actions. Further, the interpretation process maintains, redirects and changes the way participants construct their lines of action (Blumer, 1969, p. 53).

Using this perspective, we are able to enter the life world of the individual and to obtain an interpretive understanding of an individual’s actions and meanings and the motives behind actions (McCraken, 1988, p. 9). The reality that exists in social enquiry is the result of interpretation (Annells, 1997, pp. 122-123). But although social reality is ongoing, changing and dynamic, it does not go against the essence of social reality (Lomborg & Kirkevold, 2003, p. 198).

The context is important and a focus on human action does not constitute a denial of social structures. As Maines (2001) argues, meaning construction occurs through the interaction of social structural pasts and symbolic interpretative processes (p. 54). Thus, this chapter, in providing a starting point for extending our understanding of the processes whereby people with cancer in Taiwan come to use different forms of therapy, first considers historical factors that have been important in conditioning

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(although not determining) the context of the study phenomenon. Second, the chapter explores the ways in which the participants perceive and integrate the use of NWM and Western medicine.

The Context

During the past century, the health care system in Taiwan has undergone significant transformation. Prior to the Japanese occupation of 1895, the mainstream health care system was dominated by Traditional Chinese Medicine. During the Japanese occupational period, the practice of Chinese medicine was discouraged and priority was given to the development of modern Western medicine (Chi, 1994, p. 310). Many Western medical schools were established and as a result more and more Taiwanese people were exposed to Western medicine. The health care system was, therefore, transformed as Western medicine was systematically established in Taiwan during the late nineteenth and the early twentieth centuries.

However, since the time of the transfer of political power to the independent government within Taiwan (Republic of China) at the end of World War II, Traditional Chinese Medicine and Western medicine have both been acknowledged

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as integral to the Taiwanese health care system. During this time, as in the Republic of China, the policy emphasis in Taiwan shifted to the co-existence of Chinese and Western medicine (Chi, 1994, p. 311).

Soon after the transference of political power, the Taiwanese government established a medical college in 1958 that focused on developing and retaining Traditional Chinese Medicine (China Medical College, now China Medical University). This led to a gradual resurgence of Chinese medicine in Taiwan. More recently, a commitment to the co-existence of approaches to health care was reflected in and reinforced through the 1995 national health insurance policy coverage of both Traditional Chinese Medicine and Western medicine.

Taiwanese people have, therefore, experienced differing health care cultures within different political environments. The legacy of this historical trajectory is that people interact with Traditional Chinese Medicine, Western medicine and a combination of both in contemporary Taiwan.

Many different classifications are utilised in Chinese medicine. This structure of health care is made more complex by the variety of therapies that constitute Chinese

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medicine and which are generally categorised into three forms (the most well known and most comprehensive). The first is classical, or traditional, Chinese medicine based on the intellectual concepts of Yin and Yang and the five elements 2 (a philosophy that has existed and evolved for over 3000 years) and its key components are acupuncture and herbal medicine. This form of medicinal therapy is formally institutionalised and practitioners are required to qualify following a regulated period of training. The second category is the folk medicine tradition which has its origins in various locations in China and consists of practices that are not regulated and are passed on by word of mouth. The third form of traditional healing refers to the use of religious practices which adhere to a belief in the supernatural determination of disease and thus magical procedures (Lee, 1981, p. 259). Perceptions of health and illness are thus mediated through ongoing interaction with a range of therapy forms.

The Patterns of Use of Western Medicine and NWM

Most people with cancer today typically undergo a complex (surgery, chemotherapy and radiotherapy and so on) and long term treatment journey when diagnosed with this disease. In circumstances where two distinct health cultures exist, as is the case

2

The five elements (Wu Xing, 五行) include metal, wood, water, fire and earth. 107

for the participants in this study, people arguably encounter a more complex decision making process regarding their cancer treatment. This often includes the processes of making decisions that determine whether they will seek to utilise NWM (short term or long term), Western medicine, or a combination of these in their cancer treatment journey. The process whereby such decisions are made is, in Blumer’s (1969) terms, one of mediation between incentive and response in human behaviour (p. 79).

There was considerable variation in the extent to which the participants in this study demonstrated commitment to the use of NWM and in the way in which they combined NWM and Western medicine. For example, there are those who firmly believed in Western medicine: “I mainly use Western medicine. After all, this is more based. Those non traditional (treatments) are mostly word of mouth.” (Ms. Han) And “Cancer cells need to rely on Western medicine…this disease needs to rely on Western medicine, others are complementary.” (Ms. Zhu)

Mr. Shi’s family also portrayed Mr. Shi’s beliefs in Western medicine in the following account:

My husband relied on Western medicine; he did not take something else so he kept so long. He did not take secret remedies. He did not take 108

anything. The friend, who is dead, he took herb medicine or healthy products. He still died after taking them. When my husband heard this, he did not dare to take (Chinese medicine).

Similarly, for Ms. Qian, Western medicine was the only therapy to be considered for cancer. She made the following comments about how she perceived NWM and Western medicine:

I think the most correct way…for example, now you are more serious, (you) should use Western medicine. Western medicine is the best treatment. (Western medicine) suppresses it (cancer) down. When (you) get well and stable then (you think about) maintenance. It is right. This is more correct…when you get a serious disease, (it is) impossible to use Chinese medicine. (It is) still Western medicine that saves people. It’s my feeling. It’s my experience. I feel (it is) still Western medicine that saves people. Chinese medicine is impossible to save people. Chinese medicine takes good care of health. (If) we don’t have serious disease, (we) use Chinese medicine to take good care of health. Now (I am) ill, (I) still use Western medicine when it is serious, (it is) more correct. (It) won’t delay your disease, it is more correct to use Western medicine.3

3

Some quotes used in this study may look repetitive. However, the extracts were used as a whole and not edited, to avoid altering the meanings. 109

Ms. Qian’s perceptions are considered neither unusual nor dominant. Studies of Taiwanese patients, suggest that there are differences in views regarding the use of non Western medicine. For example, the Chi et al. study (1997) concluded that participants were equally divided over perceptions of the effectiveness of either Chinese medicine or Western medicine as treatment for cancer and other potentially terminal diseases (p. 45). The study found that 24.2% of participants perceived Chinese medicine as more or much more effective and 27.5% considered Western medicine more or much more effective (Chi et al., 1997, p. 45). These findings suggest that after decades of development and following the institution of an independent government within Taiwan (Republic of China), Traditional Chinese Medicine, although not as institutionally strong as Western medicine, has endured as an important health practice.

Mr. Shi’s words reflect the view that both Western and non Western medicine hold an important place in Taiwanese health care. Mr. Shi stated that Western medicine and Chinese medicine performed quite different functions in cancer treatment.

Chinese medicine, if (they are) symptoms, (they) can be treated. If it is cancer, Chinese medicine may not be able to deal with…so Chinese medicine has its benefits; it can deal with small symptoms. If they are 110

big ones, it can’t deal with them. (But for conditions)…such as a cold, bones, soreness, Chinese medicine can deal with. As far as cancer cells, it just can’t.

Mr. Shi’s views are consistent with the findings of the Chi et al. study (1997) where more than half the participants considered Chinese medicine a better option in treating conditions such as a fracture or sprain (p. 44). Hu’s study (1999) similarly found that people in Taiwan tend to seek traditional treatment (Chinese medicine) in fracture situations and for nourishing the body after illness (p. 189). In addition, a recent Taiwanese study indicates that people in Taiwan are very satisfied (92-96%) with the practice of combining Chinese and Western medicine (Lee & Liang, 2006, p. 234). Some, therefore, believe that Western medicine is the superior treatment for acute or serious health situations. Chinese medicine, on the other hand, may be seen as being slower and less effective, but as not having the damaging side effects of some Western medicines (Holroyd, 2002, p. 735).

Studies involving patients from Eastern backgrounds suggest non Western medicine approaches may be commonly used to maintain health (Zhong, 2001, p. 343). Consistent with Eastern views of health, these studies reaffirm the view that such

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therapies may be used since they are seen to supplement the body and are a key to recovery from illness (Chen & Mao, 2001, p. 40).

Such a view may explain the perception of some that NWM treats symptoms only and not the disease. In other words, NWM may be considered an interim measure and one that will not affect a permanent cure. For example, Mr. Chen stated:

I think that my personal opinion (is that), it is impossible to treat cancer by using Chinese medicine… (In Chinese medicine) you take something poison and see if it leads to (cancer cell’s) death. Yes, but that is 治標不

是治本 (it is a stopgap measure that is not effective for achieving a permanent cure)…China, from ancient times to the present, (Chinese medicine) is to deal with tendon and bone (problems). That is more useful…from ancient China, there are many death with unknown (reasons). That may be cancer. It can’t be cured. It can’t be cured by Chinese medicine. Five thousand years history, It can’t be cured before, why now?...

Mr. Yang had similar thoughts towards NWM. As he stated:

I feel the Chinese Medicine does not effect a permanent cure; it only takes 112

stopgap measures…he (the Chinese Medicine doctor) 把脈 (takes your pulse in Chinese Medicine way). How much can you understand by taking the pulse of the patients? Sometimes, even my disease, the Chinese medicine may not know what it is…

These participants see NWM, in this case Chinese medicine, to be “a stopgap measure that is not effective for achieving a permanent cure” (治標不是治本). Where NWM is used among people with cancer, it is to alleviate symptoms.

The social reality of these views has undergone a significant shift over recent decades. In Martin’s early research (1975), which investigated medical systems in a Taiwan village, we see that the most common response obtained was that “Chinese medicine cures the cause; Western medicine cures the symptoms” (pp. 128-129). This finding was reinforced some decades later in Wang’s (1990) study of people living in the middle of Taiwan where nearly 90% of participants found fewer side effects when using Traditional Chinese Medicine and thought that Traditional Chinese Medicine had a greater possibility (66.1%) of eradicating a disease than Western medicine (p. 27).

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The data in this research suggests that the environment of health care in Taiwan is changing and this is reflected in the meanings the participants attribute NWM and Western medicine. The social process here is one of the individual responding to the environment based on past and present beliefs, individual actions and new circumstances, all of which may either reinforce existing beliefs or lead to change (Mead in Chang, 2004, p. 414). This means that human beings act on the basis of the meanings that things have for them. We recognise and define the situations that we encounter and put meanings to them and in addition, we also create new meanings as we encounter something new or different (Blumer, 1969, p. 132). In other words, human beings are continually devising new meanings as they interpret situations and events that are confronted.

The social process involved in generating new meanings perhaps explains why some participants alternated between using Western medicine and NWM. Ms. Qin, for example, before she was diagnosed with cancer, thought that she had a cold and dealt with this situation as follows:

(I) caught a cold, (I) could not get well after catching a cold for a long time. (I) then tried Chinese medicine, and then Western medicine. I went

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to see the ear, nose and throat doctor. Then, I came back to see Chinese medicine doctor… then again the ear, nose and throat doctor…

Mr. Wei also accepted both NWM and Western medicine:

I originally accepted Chinese medicine therapy. It is natural from the concepts since childhood…as far as Western medicine and Chinese medicine are concerned, we have no conflicts. If (you) feel very uncomfortable, (you) try Western medicine first; (when you) get better, (you go to) see a Chinese medicine doctor…like my family, if they catch a cold, they go to see Western medicine doctor first and have a shot and take medicine. Then, (when they) get better, (they) start to take Chinese medicine…we do not repel non Western medicine, we accept both…like my parents, same time, (they) see Western medicine doctor, after that, (they) see Chinese medicine doctor in the afternoon. It is very natural. (They won’t) feel special, strange or conflict.

However, others firmly believed in NWM. For example, Ms. Zhang’s husband had an affirming experience from the use of Chinese medicine. He stated:

I had bleeding in my brain at that time. ╳╳ (the doctor in the hospital) wanted me to be operated on, I escape. He (the doctor) asked me to shave my hair. I said it was too much trouble to shave hair, I went 115

home. (Somebody) told me (to take) the core of moon peaches (and to) add lots of honey. (I) added lots of honey and drank it. Then (I) went to the Chinese pharmacy, had a prescription for 五寶散 (Wu Bao San, the name of the prescription). (I) took (it) for a while. I went to check up in ╳╳ (the hospital) after two weeks, the blood (in the brain) is 20% left.

For others with cancer, no clear distinction was made between Western medicine and Chinese medicine in terms of their potential to cure illness. As Ms. Zhu commented:

I feel everything has its best kick and has its advantages and disadvantages ( 各 有 千 秋 啦 ， 各 有 利 弊 )…somebody takes Chinese medicine or herb medicine then gets well…somebody controls quite well, somebody is cured by Western medicine. How to explain it? (He or she is) cured by Western medicine. But during the treatment, he or she may try something else. You can’t be sure. Like me, I try something, but (I) did not improve, this is my situation, but I feel some herbs are not bad, many people take then and get well.

“Each has its expertise, each has its advantages and disadvantages (各有千秋, 各 有所長)” indicates the views of people with cancer regarding Western medicine and NWM and why they may be using multiple approaches. Martin’s (1975) field work 116

study on medical systems identified similar responses (p. 128). In addition, a recent Singaporean study similarly suggested that the majority of NWM users (86%) believed both Western medicine and NWM had distinctive benefits (Lim et al., 2005, p. 20).

However, while some participants saw Western medicine as fundamental to their cancer treatment and others saw NWM as just as valid a therapy, there was a strong sense that Western medicine weakened the body and that NWM supported the body. As Mr. Zhou stated:

(I) had worse appetite when (I was) taking Western medicine. It got better after taking Chinese medicine…(I) ate more after taking Chinese medicine. (pause)…(I) ate more meals, (I had) more than five meals each day.

Mr. Sun similarly described the following account:

There was no (oral) Western medicine; (I) mainly took healthy products, because they (healthy products) had fewer side effects and less damage to the body. If (I) took Western medicine, (it) might cause liver, stomach or kidney (pause) so I avoided it if I could. I took less medicine; I relied

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on exercise. Then, (I) took nutritious (foods), enough nutrition to keep healthy.

Thus people who undergo Western cancer treatments experience and respond in various ways to these treatments. A significant factor is the perception that Western medicine is toxic and that it weakens the body systems. As Ms. Han commented:

My left leg is painful. It becomes difficult to move. Then, (I) rely on pain killers; it is not a good way. Pain killers are not good for the liver, not good for the liver…medicines need to excrete. Don’t they need to go through liver or kidney?

Moreover, Mr. Zhou described his experience:

(We came to) see a Western medicine doctor first…after several weeks, about one month, (We) gradually complemented with Chinese medicine, because taking Western medicine would damage the liver.

Ms. Zhu also illustrated this point:

Of course, it’s quicker to see a Western medicine doctor. I feel Western medicine is quicker in treatment, but Western medicine would damage 118

the body…Western medicine is a slow poison, everybody knows…you take Western medicine at the end, (your) stomach ache, like chemotherapy has also (damaged the body). My eye (sight) is blurred. Do you know? It is blurred, I can see it clearly only when it is close. If I see (somebody) in distance, the face is blurred.

In addition, Mrs. Shi in reflecting upon her husband’s experiences said:

The whole person became unconscious after the injection…(it is) agony and couldn’t get up. (The effect) is just for short time, it still grows again. (I want to) ask him to give up.

These comments reflect concern about aspects of Western medicine and specifically the side effects of invasive treatments. Indeed, a number of studies (Andrews, 2003; Verthoef et al., 1998; Wysong, 1998) point to a perception that Western medicine is over-reliant on medication administration and that this is associated with drug side effects. Andrews’s (2003) UK study indicated that 21% of participants were of the view that orthodox medicine over medicated and that complementary medicine was a more natural alternative (p. 345). People may therefore seek to avoid uncomfortable side effects from orthodox therapies by using alternative medicine (Wysong, 1998, p. 40).

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Some participants started to use NWM immediately following diagnosis and not in conjunction with Western medicine. These participants often saw NWM as an alternative rather than complementary therapy.

Doctor X told me that I was diagnosed as lymphoma. After three or four days, I started to take 牛樟菇 (Niu Zhang Gu, one kind of mushroom). I knew it from more than twenty years ago…I do not want to have conflict with Western medicine…I then avoided it as much as I can. I stopped one week because of chemotherapy. Then, I took it everyday…(but) I stopped them (Niu Zhang Gu and other herbs) when I was admitted into the hospital…stopped all of them. (Mr. Wei)

Others ceased NWM when receiving chemotherapy:

I did not want to take anything else (NWM) when (I was) doing chemotherapy. Then (they) won’t conflict with each other. (Ms. Wu)

The majority of participants, however, used a combination of Western medicine and NWM which they took simultaneously. Several studies (Chiou, 1999, p. 398; Teng et al., 2000, p. 217; Xin et al., 1996, p. 127) report that the practice of combining

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Western medicine and NWM at the same time is common (between 60-82% of people) in Taiwanese daily life. This is consistent with the findings of this study. Ms. Chu made the following comments about this issue:

I still mainly use Western medicine and use Chinese medicine as complementary. (I use) that (healthy products) as dessert…I take Western medicine before meals and after meals, I take Chinese medicine after meals, one hour apart between the two…following the Western medicine, he (the doctor) said to do the chemotherapy then I did. I take Chinese medicine taken after meal. There is one hour apart between Western medicine and Chinese medicine.

The significance of NWM use in the treatment programs for people in this study was also reflected in the timing with which such therapies were used. For example, some participants modified their treatment programs depending on their perceived responses to treatment. For example, Ms. Qin also stated:

If sometimes you take Western medicine, but it is not effective, (you) try Chinese medicine. (You) take Chinese medicine for a while and then (you) take Western medicine for a while. Like this, you change back and forwards.

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As the Chi et al. (1997) study indicated, almost a third of participants indicated that they would choose to use Chinese medicine if it appeared to be more effective than Western medicine under certain health conditions (p. 44).

Similarly, where there was a recurrence of cancer and a sense that Western medicine had failed, some then turned to NWM. As Ms. Shen stated:

At that time, my thinking was (it) may still be more effective by using (Western medicine) doctor’s way. This was the thought at that time. Later on I wanted to try (NWM), because I also did the chemotherapy. But why do I still have a recurrence? I felt in my mind a little bit disappointed. I would like to try something different.

In contrast, Ms. Zhang ceased herbal medicine when her health deteriorated and sought further advice and treatment from Western medical practitioners. In her own words:

(I) couldn’t walk; suddenly (I) couldn’t walk. I told you that before (I) could walk by placing a hand on something for support… suddenly (I) couldn’t walk with support. (We) went to hospital otherwise. I stopped taking (herbal medicine) then, my son worried, too, (We) went to the hospital quickly otherwise. 122

Changing experiences thus result in an ongoing and unfolding process of an individual’s conceptualisation of health and his/her priorities and values (Chan et al., 2006, p. 303). As Mr. Shi reflected in the following account:

I had body strength when I took them (nutrition supplements), right, it got better, but I tried not to take for a while, I lost (body strength) all over again…I test if it is effective. The result is that it is effective when I take them, it is not effective when I stop taking them...

Ms. Xu had higher expectations of NWM (Fa Lun Gong, 法輪功) that she had used. In her own words:

I thought to get cured when I try this (Fa Lun Gong), because there are always side effects in Western medicine. I felt scared. I was afraid of what would happen after taking (Western medicine). It may get more serious after treatment. I was scared. (My immune) resistance was worse at that time. (I had) an oral ulcer. (I had) an oral ulcer after treatment. One time, after I took and injected medicine (for a period of time), I developed earache. Nothing was found after examination. (It) can’t be treated. (It) was very painful. (My) ears were suddenly cured after I practiced Fa Lun Gong.

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We see, therefore, that new experiences or situations lead to the formation of new definitions. The interpretative process goes through a digestive phase in which an individual compares experiences and then transforms an interpretation into action (Blumer, 1969, p. 133). When a developing concept leads to action that does not have the desired outcome, new actions are developed (Blumer, 1969, p. 157). Thus, people act after they interpret the actions of others and the places and incidents that are the context within which an act takes place (Gusfield, 2003, p. 122). This can be seen in Mr. Shi’s decision to cease using NWM.

Thus an individual’s conceptualisation of health and his/her priorities and values is an ongoing process and this helps to explain why the participants in this study made a range of decisions about the use of Western medicine and NWM. Some utilised different therapies at the same time and others vacillated between using one or the other treatment mode depending on issues such as beliefs and perceptions about treatments. This is depicted in Mr. You’s reflection on his experiences:

(I) lifted oranges (the participant is an orange farmer), (I) hurt my back. (I) went to ╳╳ hospital. (I) had X ray…nothing was found and he (the doctor) said (you) may be too tired, hurting the nerve. After one month, 124

(I) was still sore. (I) changed to Chinese medicine massage for four times. (I) got very sore in the middle of the night after the fourth time. Then (I) changed to Western medicine the second day. (I) had a needle and injected pain killers. (I) saw Western medicine doctor, took the medicine and had a needle. (I) still felt pain the second day…(and) a dry cough, dry cough. Sometimes (I) took Chinese medicine, sometimes (I) took Western medicine. Then, it got better, not coughing…

This process was also reflected in Ms. Qin’s account:

The doctor asked me to do chemotherapy. (I) heard somebody say doing chemotherapy is terrible…(I) did not dare to do it, it was delayed for one month and I went to see the Chinese medicine doctor. Somebody introduced (him to me), it is not the one I see now. Then, I took (Chinese) medicine for one month. I had a very serious cough at that time. It was a very serious cough. I almost couldn’t breath. At that time, I decided I still needed to do chemotherapy…

Others pointed to various reasons for engaging with NWM. Although Ms. Zhang sought advice on Western medicine, she chose to take a herbal remedy:

(Somebody) takes it (herb remedy) and gets well…he (the friend) said it is necessary to have patient to take that (herb remedy), someone takes

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300 prescriptions of them, (he or she) still takes. It costs only NT 70 (AS 2.9) dollars for each prescription, (it is) not expensive…I am not afraid of medicine, but it becomes my worry after taken. (I) worry why the more I take, the more painful in the whole body…no, I just take this, I think I can not mix the two (Western medicine and herb remedy).

Forms of NWM Use

This study has also found that people integrate many different forms of NWM with Western medicine during their cancer treatment journey. Some people with cancer use nutritional supplements, some forms of which are considered to be Traditional Chinese Medicine. This therapy was the dominant form of NWM used by the participants in this study. Participants introduced nutritional supplements either at the point of diagnosis or at some point during the cancer treatment. Mr. Jiang used Chinese Medicine and commented:

Personally I mostly take Chinese medicine…medicine would not damage the stomach so much. Although it is not so quick to be effective, it is better for the body.

Further, Ms. Zheng explained how she came to use nutritional supplements: 126

That is because other patients introduced it. He said it (nutritional supplement) is effective after taken. I tried. It focused on the disease and it would be better if (we) take it. Then, I tried…when I couldn’t eat other things, I ate that (nutrition supplement). I felt that it could maintain physical strength and I would get well sooner…I felt first I am still young, (my) father considered (I) am still young and have enough resistance. Second, it (Ya Pei, one kind of high protein formula milk) is like medicine. Ya Pei is like chemotherapy medicine, only it is lighter, it is a lighter medicine. I felt it is only complementary. (I) did not mean to use as medicine…I am afraid that I do not get enough nutrition. I then went to take medicine (Ya Pei) in order to supply the nutrition I do not get.

Others also have long held beliefs about healthy products and these informed their choices of therapy during the illness trajectory. 有病治病, 無病強身 (it treated your disease if you had one; if you did not have disease, it could help you to take care of (your) body) is a common belief of Chinese people regarding healthy products or nutrition supplements. As Mr. Zhao illustrates here:

After I took this (healthy product), (my) body became very healthy and in very good spirits. (It)(healthy product) treated your disease if you had one; if you did not have disease, it could help you to take care of (your) body. My friend… who is a teacher…I also gave (it to) him. He 127

said it was good after taking (it) (healthy product).

Ms. Wang similarly utilised nutritional supplements, but here to deal with loss of appetite due to side effects of cancer treatment. As she reflects in the following account:

(I saw) it as snack, like water. (I) drank it when (I) had time…(it is) effective, not bad…I did chemotherapy and radiotherapy together at that time. (My) body was weaker, (I) couldn’t eat anything at that time. I even couldn’t drink An Su (high protein milk). I was retching. After injecting chemotherapy, (I) would vomit; (I) couldn’t eat at all. (I) drank milk later on and ate rice soup. (My family) cook pork rib rice soup. There was a period of time where the oily (foods made me retch) (I) couldn’t eat.

Other participants combined Western medicine and nutritional supplements because they considered that the supplements (or so called healthy products) are good for the body. As Mr. He stated:

But the doctor also injected that (the medicine), he injected beforehand (chemotherapy) to stop the vomiting…healthy products are all good no bad…I take as usual. It is quite smooth after taken.

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Mr. Lu also had similar views of nutrition supplements and stated:

Doctors know if healthy products are good or bad…healthy products are all good not bad…they (healthy products) are made from big factories and many people are taking them…(We) need enough nutrition. If nutrition is not enough, if we don’t have enough nutrition, it will be awful.

Of those who decided to use nutritional substances during the cancer treatment journey some adjusted treatments to suit their perceived changing health needs. Mr. Chen stated that:

I took green algae sometimes, because it is more alkaline…(I had) more energy (after taking)…I took double dose. It doesn’t matter.

The cancer journey is thus a process whereby people with cancer interact with both Western medicine and NWM. Some people hold the belief that natural remedies may be safer and more effective than drugs prescribed by physicians (O’Callaghan & Jordan, 2003, p. 31). People come to know of these healthy products, or so called nutritional supplements, either through consultation with a doctor of Chinese 129

medicine or through word of mouth. However, although Chinese medical practitioners may be regulated, the selling of nutritional supplements and other similar products is not controlled. Providers of NWM often disperse information about such treatments in an incomplete form and without endorsement from regulatory authorities. In this study, most participants who used nutritional supplements as NWM did so without discussion with health care professionals.

Some participants made a clear distinction between nutritional supplements and other therapies. Some also indicated that they were not yet at the stage where they were willing to try alternatives to nutritional supplements. An example is Ms. Wu who stated: I did not feel very uncomfortable in the body now, so I did not want to try (other NWMs) yet. Mr. Jiang also saw the use of Western medicine and NWM as a process. Because he did not finish one (Western medicine), he did not want to start others (NWMs). In his own words:

You finish one process then start the next process. Because I do not finish yet, I don’t know…these are too far to consider. After (I) finish this, then (I) start another treatment…you do chemotherapy. Follow Western medicine then use Western medicine as possible. Don’t mix them. Then, when you do regularly check up, regularly check up, you can find something else. (You can have) more ways to increase 130

effectiveness.

While nutritional supplements were most common, the participants did use other forms of NWM. For example, Mr. Chen stated:

(I) started when the disease was found…Hei Teng (one kind of herbs)…grinding into powder. (I) sent (it) to somebody to grind into powder and take it as powder, or boil it with water and drink as tea…(I) stopped (it) when (I was) doing chemotherapy, this is anti-poison. That (chemotherapy) is poison, I was afraid they would clash with each other. I did not dare to take them at the same time…I feel this is effective. I felt numbness on my hand, not be able to touch a pen…I felt numbness like was shocked by electronic. It was so painful, too painful to touch anything. It (Hei Teng) can improve this, I feel very good.

A study involving Taiwanese patients with metastatic cancer found that although herb medicine (23.7%) and acupuncture (40%) had no effect on the cancer itself, patients reported that these therapies were able to relieve palliative symptoms caused by cancer or cancer treatments (Xin et al., 1996, p. 132).

In addition, Mr. Li utilised Chi Gong to regain the physical strength he had lost as a 131

result of radiotherapy side effects. He made the following comments:

So (the neck) becomes harder, no saliva. I went to subsequent (doctor) visit, I asked the doctor, can it improve or not and he said (it) can’t be improved. I said I can think by myself. I trained my body stronger…then I (practise) Chi Gong. (pause) If (the things) I like, I watch, learn and practise. Guo Lin Xin Chi Gong, I practised everyday in one stage…

Mr. Li also perceived the practice of Guo Lin Xin Chi Gong as an effective treatment for cancer:

I feel this (Guo Lin Xin Chi Gong) is better. Why? The reasons are said inside (point the book of Guo Lin Xin Chi Gong). The reason, because the cancer cells do not like oxygen, (you) breathe in (with the action of breathing in) and bring in a lot of oxygen in red blood cells. At this time, it (the oxygen) can control cancer cells, even kill cancer cells. So, it (the cancer cells) shrinks. Cancer cells shrink and shrink. Let it (the cancer cells) withers away...

Chi gong consists of exercises that combine meditation, non-impact movements, and breathing activities. It is argued that the practice of chi gong re-establishes a balance between the mind and body thereby addressing physical problems and strengthening

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the immune system (Bottomley, 2004, p. 253). In addition, chi gong is seen as energy exercise and combines physical exercise and meditation in order to eliminate energy obstruction and harmonise the different sections of the body. The overriding principle is one that underpin Traditional Chinese Medicine and this is that for any part of a person to be healthy the whole body must be taken into account; body, mind, and spirit at once (Graham, 1999, p. 78).

Although chi gong has its origins in ancient China, few participants practiced this form of therapy. Chang and Li (2004) found similarly and suggested that this may be because cancer sufferers are too fatigued to practice this exercise (p. 42, 44). Only three participants (Mr. Li, Mr. Jiang and Ms. Xu) made reference to the use of some form of chi gong during their cancer treatment journey. Two participants (Ms. Shen and Ms. Han) noted that they used to practice chi gong but were now too weak to practice.

Regulation of Diet as Therapy

The preparation of specific foods is seen, by some, as a form of Chinese medicine. The use of food as medicine exists in everyday conversation and thus is deeply 133

entrenched in Chinese everyday life (Holroyd, 2002, p. 743). Families believe that diet and traditional Chinese medicine can be integrated and adopted into self-care strategies (Simpson, 2003, p. 834). Mr. You’s family referred to the use of Chinese medicine as a diet therapy to enhance body strength:

My husband’s good friend, he had liver cirrhosis. He had an operation and he told me to use those Chinese medicines, Astragali Radix add red Chinese dates and Lycii Fuctus, cook into water and let him drink it. He said (it can) supply body strength. I cook everyday for him to drink…we keep cooking pork rib rice soup for him to eat, that Astragali Radix, Lycii Fuctus and red Chinese dates cook into water and drink as water. They said (it can) supply body strength. (He) always eat like that. Occasionally, because of wounds at that time, the doctor said (to us) to drink orange juice. I let him drink ╳╳ (the brand name of orange juice). (I) added collagen.

During the process of combining Western medicine and NWM, many people living with cancer believe that there are certain dietary taboos which inform what they should or should not eat. Mr. Chen made the following comments about this issue:

The Western medicine doctors do not believe what you can’t eat and what you can eat, only Chinese medicine. The meat of chicken, duck and goose 134

are more poison…because chicken, duck and goose usually inject antibiotics, too many injections, they are not good in meat. Animals without tears, such as fish and prawns…do not eat if possible...those without tears, do not eat if possible, because they are poison, too.

Certain dietary taboos are common to Taiwanese society. Chang and Li’s (2004) study shows that 60% of the cancer participants consider that they should not eat “toxic” foods such as duck, goose, eggplant, certain kinds of fish and sea food (p. 43).

In addition, Mr. Sun stated:

I feel eating natural foods is better. Those are not polluted. There are many chemicals now and they damage the body a lot…those vegetables with pesticides and fruits with pesticides, like we got cancer, we like to eat organic more. Organic (foods) are chosen specially, (they) do not have so much chemical pollution, so (we) eat those things better for the body.

Summary (NWM Use as a Social Process)

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During this journey, a person with cancer draws on concepts of health and each individual’s conceptualisation of health is shaped by complex interactions between the personal and the social dimensions (Chan et al., 2006, p. 302).

People adjust their therapies depending not only on perceived responses to the effects of treatments but in accordance with belief systems that are grounded in cultural and social systems. As such, people with cancer may combine both NWM and Western medicine for short or long periods during their cancer treatment. They may also alternate between NWM and Western medicine and between various forms of NWM. We see, therefore, that the overall picture of the use of NWM and Western medicine is a complex one.

The following chapters explore why and how people with cancer in Taiwan come to use NWM. A number of significant dimensions have emerged from the data that portray a process of interaction between philosophical beliefs, family connections, community connections and professional relationships and practices. Each of these dimensions is discussed, in turn, in Chapters 6 and 7. In their totality, these aspects characterise the ways in which interactions at both the micro and macro levels inform the decisions of those with cancer to use NWM. The analytical focus is on an

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interpretative process which is used to discover relationships and concepts in the raw data and to organise these relationships and concepts into a theoretical explanatory scheme (Strauss & Corbin, 1998, p. 11).

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CHAPTER 6 Philosophical Beliefs

The previous chapter explored the ways in which people with cancer in Taiwan use both Western medicine and NWM. We noted in the chapter that human beings take action when things have meanings for them and such meanings develop from, or draw on, the social dialogue one has with others and from interaction with social structures.

Two key points emerge from this understanding. First human actions exist as a relationship between subject and object and not simply as a response by subject to object (Gusfield, 2003, p. 124). Second, context and structure are integral to the conditioning of meaning and human actions take different forms within different contexts (Gusfield, 2003, p. 121). Thus, social interaction and context and how these inform perceptions of the role of NWM appear to be complex and dynamic.

This chapter focuses on the contextual dimension of philosophical beliefs and how such beliefs inform the views and perceptions of participants as they encounter the 138

experience of cancer and cancer treatment in their everyday lives. The theme “philosophical beliefs” reflects an interactionist process whereby a person communicates with others and checks, chooses, reorganises and transforms actions within particular social contexts (Blumer, 1969, p. 5; Haworth-Hoeppner, 2005, p. 5). In other words, philosophical beliefs provide an important context within which meanings that surround a diagnosis of cancer are mediated.

Philosophical Beliefs

Health beliefs are accumulated from the experiences of individuals and from the collective memories of a community and these form a human being’s interpretation of life, birth and death, right and wrong and other beliefs and values (Quah, 2003, p. 2001). For example, studies conducted in western countries identify cultural differences as a factor that may affect a person’s health and illness behaviours (Thomas, 2002, p. 80). People from different cultural contexts may have different explanatory models to define health and illness behaviours and they are likely, therefore, to seek out different health care systems consistent with their beliefs about their disease (Lin & Ji, 1998, pp. 6-7; Lai, 1997, p. 169).

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As with people from other cultural backgrounds, Taiwanese people draw on communal philosophical beliefs in constructing the meanings they attribute to illness. Such beliefs provide explanations of disease and thus also construct the personal and social meanings of disease. A person may, therefore, utilise a treatment which is consistent with her/his explanation, an explanation which is contextual. For example, a study by O’Callaghan and Jordan (2003) concluded that people who hold positive attitudes towards complementary and alternative medicine may use these therapies because the philosophies that underpin them are in harmony with a self-belief system (p. 31).

In the context of this study, the emergent themes of traditional Chinese philosophy, religious practices, and traditional Chinese proverbs and a belief in self destiny, are conceptualised under the broad umbrella of philosophical beliefs. The relationships between each of these dimensions present as a web comprising numerous connections and interconnections.

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An ancient Chinese medical textbook, Huang Ti Nei Ching Su Wên4, points out that medicine is considered a part of philosophy, religion, general ethics, and life regimen. Furthermore, it represents a oneness with nature (Veith, 1972, p. 10). Such traditional philosophical beliefs thus see medicine as an integral component of all dimensions of life, and these beliefs have endured in Taiwan.

Traditional Chinese Philosophy

The purpose of this study is not to focus on Traditional Chinese philosophy and therefore the participants did not explicitly articulate their views on this tradition. However, an understanding of Traditional Chinese philosophy is shown as a key to how and why people with cancer in Taiwan use NWM.

Traditional Chinese philosophy is integral to the views and values of people in Taiwan and is significant because it has been sustained in Chinese culture for many thousands of years. This philosophical context is, in turn, important in shaping perceptions of disease and affects the ways in which people interpret their symptoms, communicate these to others and give meaning to them (Taylor, 2001, p. 199). For 4

Huang Ti Nei Ching Su Wên: a seminal work on traditional Chinese medicine, written four thousand years ago, in 2697 B. C. The original text is written in Chinese. The reference referred to here was translated by Ilza Veith in 1972. 141

more than 2000 years, Confucianism and Taoism have shaped Chinese traditions and these belief systems continue to be a significant part of the Chinese traditional cultural inheritance. Furthermore, Confucianism and Taoism are central to social, moral, philosophical, political and cultural affairs (Woo, 1997, p. 85) and, as such, influence concepts of health and health seeking behaviours.

Confucianism holds that where there is a discord of heart and mind a person can not remain healthy and mental well being is, therefore, essential to good health (Ni, 1999, p. 30). The Confucian belief is that the human being is formed at three levels: the physical, emotional and spiritual. To sustain a state of good health, a balance must exist among these forces and between a human and the environment. There is no separation between body and mind; they are always related in a dynamic way. Thus, the human state is seen as a dynamic process, not fragmented, and closely related to the environment (Graham, 1999, pp. 80-81).

In addition, the Tao philosophy in Taoism sees humans as a whole and exalts the notion that civilisation should assist humans to be with nature or unite with nature (Ma, 1990, p. 238). Taoists seek the best possible way for a person to live a life in harmony with the cosmological and natural realms (Tsai, 2006, p. 685).

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This belief in the importance of maintaining a balance of body, and body and environment, is a central tenet of traditional philosophical beliefs which inform traditional Chinese health practices. The Confucian belief of balance and the Taoist naturalistic thinking both have an impact on the healing philosophy of Chinese people. Hence, those who practice traditional Chinese medicine do not treat parts of a person as isolated entities nor the person in isolation from the environment (Ni, 1999, p. 30). This is illustrated in Ms Han’s comment:

Because taking those (NWMs) do not have so many side effects, I hope then, if it is effective…these are not awful to take...If (I) can, (I) can keep going to take all the way through to see if (I) can get a balance point...

According to Huang Ti Nei Ching Su Wên, traditional Chinese medicine originates from the dual power of Yin and Yang theory (Lao, 1999, pp. 216-217; Veith, 1972, p. 6, p. 13) which, in turn, is considered symbolic of both Confucianism and Taoism. The phenomena underlying this theory classifies pairs of seemingly opposites where Yang symbolises the sun, heat and light and Yin, the moon, coolness and darkness. These pairs do not exist in conflict but are produced cyclically so that every experience reflects the point at which either Yin or Yang dominates (Shih, 1996, p. 143

209, Veith, 1972, p. 14). This means that every phenomena, including sickness and health, has the potential to appear as its opposite, or to change. A belief in the concept of the body as a whole leads to the further belief that the imbalance of Yin and Yang may cause diseases (Spencer, 1999, p. 6).

In order to put forth their dual power, Yin and Yang are connected by metal, wood, water, fire and earth (known as the five elements). Yin and Yang and the five elements theory (Wu Xing) explain Chinese perspectives on the natural sciences including transformations in the universe, the nature of phenomena, and in human beings (Lao, 1999, p. 217; Veith, 1972, p. 6, p. 19). These thoughts are deeply rooted in Chinese culture (Du, 1997, p. 162) and they combine and construct the basic theory of Traditional Chinese Medicine. In Chinese medical knowledge, the notion that heaven sits in contrast to the earth, is also considered a reflection of our inner body landscapes (Schroën, 2002, p. 94). Traditional Chinese medicine and Traditional Chinese philosophy converge on this conceptualisation of nature and this in turn shapes social behaviours.

Thus we see that one of the characteristic features of oral and written healing traditions which demonstrate a community’s health knowledge within the cosmology 144

is Traditional Chinese medicine. The ancient Chinese developed these theories to illustrate and define the nature of phenomena, such as illness and health (Shih, 1996, p. 209). Where a balance is disrupted, disease occurs. For example, Ms. Chu explained that:

Taiwanese may believe more in Chinese medicine…they consider that Chi is needed to nourish. Because you do not have enough energy, Chi, spirit (精氣神, Jing, Chi, Shen), then (you) get sick.

A belief in the balance of Yin and Yang is thus an important factor in understanding the social behaviours of Chinese people (Shih, 1996, p. 209). This is significant because it points to the importance of a belief system that underpins the use of NWM in emphasising harmony with the body. It not only interprets nature and natural phenomena but also reveals the subsequent social construction of the meanings of symptoms, situations and relationships (Quah, 2003, p. 2001). Mr. Yang reflected on the complementary nature of NWM in the following account:

Chinese medicine takes more care of you in complementing your body. I think only about this. It (Chinese medicine) does not treat you. It does not treat your original (disease).

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The extent of the use of NWM in Chinese communities is evident in a range of studies. Lim et al.’s (2005) study concluded that 99% of Chinese living in Singapore utilise various types of Chinese medicine (77% of the population in Singapore is of Chinese origin) (pp. 17, 19-20). Furthermore, people who use NWM consider that the philosophies that underpin NWM are consistent with their own belief systems (O’Callaghan & Jordan, 2003, p. 31). In other words and as noted previously, in this tradition it is culture and not science that defines the usefulness of NWM (Chi, 1994, pp. 308-309).

A study undertaken in the People’s Republic of China found that, of doctors who received Western medicine training, 76% treated their patients with Traditional Chinese Medicine, 90% used Traditional Chinese Medicine to treat their family and friends and 82% would refer their patients to Traditional Chinese Medicine specialists (Harmsworth & Lewith, 2001, p. 149). Despite the development of Western medicine, Traditional Chinese Medicine continues to be a fundamental component of healthcare in China. Although Western medicine is readily available in most Asian countries, traditional medicine remains attractive because of historical and cultural influences (Zhang, 2000, p. 139).

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The concepts surrounding philosophical beliefs thus influence people’s attitudes about cancer and behaviours in response to cancer. Yet, this is an interactionist, not a static process. Consistent with Chinese philosophy, just as the existence of one phenomena is never devoid of its opposite, so the thoughts and actions of people alter according to changing experiences. In pursuing action, behaviours are purposive and continuous and constructed in particular contexts (Millers & Hintz, 1997, p. 88).

Religious Practices

Religious traditions and practices are part of the daily lives of many Taiwanese people and have a long evolutionary history. Chinese religious practice is particularly complex because it has been formed from the different traditions of Taoism5 and Buddhism (Veith, 1972, p. 10) and has developed and been reformed over thousands of years. In addition, Chinese religion has a deeply entrenched connection with Chinese philosophy (including Confucianism and Taoism) dating back to the Sui and Tang Dynasties of 581-907 A. D. (Woo, 1997, p. 85).

5

Religious Taoism is also referred to as Daoism. It is noted that Taoism as a religious practice differs from Taoist philosophy. Furthermore, Confucianism is not considered a religion (Budenholzer, 2001, p. 759). 147

The major religious beliefs in Taiwan include the dominant folk beliefs, Taoism and Buddhism. However, the boundaries between these various religions are often blurred. In Taiwan, for example, Buddhist deities exist in Taoist temples and vice versa (Budenholzer, 2001, p. 756). The characteristics of Taiwan’s popular religions are thus quite complex and they intersect or even transcend to a range of different manifestations (Katz, 1999, p. 70). While it is a complex process, Carone et al. (2001) argue that religion is the means by which people interpret their own lives and the world around them (p. 999).

Religious tolerance has long been a feature of Taiwanese society. Over the centuries, Buddhism and Taoism have allowed significant integration with Confucianism and vice versa (Lee & Sun, 1995, p. 101). It is because Chinese religion has absorbed a variety of influences from a range of belief systems that Chinese folk religion exists as a combination of religious practices which include ancestor worship or veneration, Buddhism and Taoism. This system of beliefs and the vast range of associated practices have been passed down from generation to generation through various ways such as oral tradition, formal cultural activities and rituals and literature.

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Folk belief and the temple are everyday aspects of many Taiwanese people’s lives because religious activities associated with folk beliefs are usually combined with ritual and traditional customs (Chen, 1995, p. 58; Cai, 1992, p. 172). It is not unusual, therefore, to find that people with cancer in Taiwan draw on a combination of religious practices:

犯太歲 (Fan Tai Sui)6 is known every year. It is shown on 農民曆 (Nong Min Li)7…(I) felt not very smooth then. To start with, thieves stole from the house at start of this year. How was this? (I had) never been so unsettled. (I) had no ideas. Then, I suddenly got sick. It was just on July in (the) lunar calendar8 (Ms. Zheng)

It is estimated that 70% of people in Taiwan adhere to some form of folk belief and this may be a conservative estimate because, as Budenholzer (2001) argues, many are reluctant to acknowledge openly their folk beliefs. The practices include fortune telling, a belief in ghosts and spirits and burning ghost money to ancestors (p. 756). As Budenholzer (2001) also points out, religion for Taiwanese people is far less a

犯太歲 Fan Tai Sui: According to the lunar calendar (twelve animals symbolising designate years), if someone comes across the year of animal that is the same as the year that he/she was born, it is called Fan Tai Sui. This usually means bad luck. 7 農民曆 Nong Min Li: This calendar has informed farmers since ancient China and is still widely used in Taiwanese culture. It guides the growing of crops and the prediction of a person’s luck in the coming year. 8 July in the lunar calendar: According to the lunar calendar, July is a ghost month. People believe that the ghosts can be released during this month to find their followers. In this way, people can avoid sickness and hospitalisation. 6

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faith than a set of ‘activities’ for dealing with life situations (p. 757). This is illustrated in the following examples. Ms. Qian’s folk belief influenced her decision to seek guidance from a “fortune teller” (temple assistant or religious counsellor) from household shrines and to combine this with Western medicine. She stated:

If you heard 算命先生 (the fortune teller)9 say you may have more disease and agony this year…when we got sick, we went there to ask him (the fortune teller). He said (you need to) pay more attention this year; there is more disease and agony this year. Fate is more long-winded and lousy. My feeling is different. I did not go last year and the year before, but he said then you are not bad. It is true, my body felt well. (I) went overseas, nothing happened. He said you need to pay more attention this year, there may be something wrong with the body. True, it is true. I said I have no choice but to believe it. My feelings and my experiences (told me) the differences…My feeling is that he (the fortune teller) is truly accurate. He told us our past and our future, not 100%, but at least 80%. We have no choice but to believe it…

算命先生 (the fortune teller): The roles of fortune teller in Taiwan are varied. Ms. Qian actually means temple assistant or religious counsellor in the context of the interview. These roles usually exist in temples and involve special skills, such as tell the fortune and spirit calling. 9

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Mr. Chen also stated:

(We) ask the Deity10, the Deity knows…the Deity said that it can’t be delayed anymore. (You need to) go to a bigger hospital. It is true, I need to have the operation after seeing the doctor…the Deity said it can’t be delayed, this is not an ordinary disease.

Ms. Qian and Mr. Chen are what might be termed practical believers where religious practice is based on practical usefulness and evidence. The concept of practical belief is noted in this study and corresponds with the findings of an earlier study by Harrell (1977) on modes of beliefs in Chinese folk religion in Taiwan. Harrell’s (1977) study found that Taiwanese people’s beliefs can be categorised into four types: intellectual belief (trying to make sense out of reality), true belief (accepting everything with total innocence), practical belief (evaluating religion based on evidence) and non-belief (denying religion is relevant) (p. 55). The tenets of religious practice for practical believers rest on explanations from past experiences in particular situations (Harrell, 1977, p. 59). In addition, the role of fortune tellers or so called Taoist

10

The Deity: the particular deity that Mr. Chen mentioned (he revealed the name of the deity later on in the interview) is the deity who is in charge of health and medicine. 151

priests is similar to healers in the local Chinese community. In so doing parts of folk beliefs are thus common realms within health care (Kleinman, 1975, p. 608).

There are several forms of religious practice in Taiwan. It is common for people in Taiwan to pray to the deity, whether Buddhist or Taoist and to chant A Mi Tuo Fo (an incantation) when they have a serious illness. Several studies have found that the most common religious practice of cancer patients in Taiwan is praying and chanting Buddhist or Taoist scriptures (Chang & Li, 2004, p. 43; Lin, Liou & Wang, p. 1996, p. 38). As Ms. Wang stated:

(I would) ask the Deity sometimes. (I would) ask somebody to 改運 (to change fate through some special ritual ceremonies) sometimes… (I) had this habit before (I was) sick…when I was in agony in the hospital, I would pray. I would pray to 觀音菩薩 (the Goddess of Mercy)11 to make me not feel so much agony or let me get well soon. Doing chemotherapy and radiotherapy are sometimes very hard. (I would do) the same at home, I would pray. A Mi Tuo Fo (an incantation), the Goddess of Mercy, help me.

觀音菩薩 (the Goddess of Mercy) is a common deity in Taoism.

11

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Holroyd’s study (2002) found that where a participant’s experiences of hardship had gone beyond social and physical possibilities, that person drew support from supernatural causes and methods of treatment. For example, daily religious activities and visits to temples are utilised to help the restructuring of a person’s world and to rationalise suffering (p. 741). Because of the level of suffering, many participants in this study looked to religious beliefs to give some sense to their situation. As Ms. Chu illustrated:

A believer forever believes. (If) you believe (in religion), it is better than being absent-minded…in fact, some people are really helpless. He/she is helpless because he/she can’t find a way out. You feel some people are in this (situation)…(I become) more calm in mind, more accepting of the truth( that I have cancer) gradually (through religion).

A further study which investigated folk medicine utilisation behaviour in peritoneal dialysis patients in Taiwan, found that 87.5 % of participants prayed to the Deity, half of participants went to see fortune tellers and 12.5% of participants engaged in spirit calling ceremonies. Almost three quarters (70.8%) of participants indicated no obvious changes in the body; however, 79.2% of participants pointed out that they obtained psychological support and had more confidence in the body (Liang et al., 2002, p. 110, 112). In addition, Yeager et al.’s (2006) study shows positive 153

relationships between religious practice and a range of health outcomes in the Taiwanese elder population (p. 2238).

These latter findings reflect the perceptions of Ms. Qin who stated:

I feel change a lot, it is true. I feel it is true…because when I was diagnosed, it was not the first stage, it was the third stage, not easy then. (I) saw many people, those (patients) who were doing chemotherapy, (they) already have died…I feel religious belief really seems to help you imperceptibly.

Religious practices were also important to Mr. Chen:

I believe in 密宗 (Lamaism, one kind of Buddhism), (I) would memorise some spells. Before sleep, I memorise, say some spells and imagine cancer cells disappearing…(You) can’t say it does not exist, it’s mysterious…otherwise, from May to now (October), it is only a few months. The doctor said to me I am stage III and have metastases. It went to both my tummy and neck’s lymph nodes. It was treated up until now, only a few months. Only 1.8 cm is left on the neck and other parts have

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almost disappeared…I felt it couldn’t be repelled from Chinese medicine or Western medicine. You need to cooperate with them (both).

One study which investigated the motivation and need for “spirit calling” in southern Taiwan found that 80% of participants participated in the practice of seeking spirit calling (Teng et al., 1999, p. 217, 222). For some of these patients, one explanation for the cause of their disease was invasion by a ghost or the deity.

Participants sought guidance from the Deity to assist them to make decisions in various situations including which hospital to attend. As Ms. Zheng stated:

(We) asked the Deity which one is better (and he said this one) ╳╳ is better, so I transferred to here. (pause)(I) had no choice but to believe this because the whole treatment was very smooth. (I) was hospitalised for 28 days and fine. (I) recovered to be very normal except for side effects in the middle, nothing else.

As has been noted, what is notable in this study is the pattern of co-existence of religious practices and Western medicine. In Ms. Zheng’s view, when faced with cancer, both medicine and religion are needed.

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Both the person (the doctor) and the Deity are needed. It is true. Because my disease occurred in July in lunar calendar, my mum especially worried a lot, I 犯太歲 (Fan Tai Sui) this year.

Thus, although Western medicine is considered important, Chinese medicine and folk medicine assume an essential role in determining the actions of people with serious illnesses (Yang, 1992, p. 122). Many Taiwanese conceive of treatment where “both the person (the doctor) and the Deity are needed” (要人也要神) (Zhang in Wang, 2001, p. 93).

Indeed, even though over the last few decades Taiwan has become increasingly westernised both economically and politically, a notable feature has been the growth in the number of Buddhist and Taoist temples. Temples have a long history as one of the most significant public arenas or public spaces in Taiwanese society (Katz, 2003, p. 412). As Katz (2003) points out, the number of Buddhist and Taoist temples increased from 3661 in 1930, to 5531 in 1981 and by 2001, there were 9,707 such temples registered with the state (p. 396). Religious practices thus remain an important facet of Taiwanese life.

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As Budenholzer (2001) argues, science has not become the philosophy of life for people in Taiwan but is valued for its capacity to address problems (p. 756). Over 100 years of development of Western medicine in Taiwan, the link between religion and Western medicine has gradually strengthened if not philosophically, certainly in economic and practical terms. This is reflected in an increase and particularly since the end of martial law in 1987, in the appearance of religious sponsored hospitals and clinics. In 2001, Buddhist and Taoist temples were operating 20 hospitals and clinics and these are predominantly Western medicine based.

We see, for example, that for Ms. Qian, the combination of Western medicine and religion is important. Her view was that one sustains the body and the other the mind.

I feel if a person is sick, the most important (thing) is to see a doctor. (It is) most correct, I feel this is most correct. This is most correct. (It is) impossible to get well by going to pray. Still if you are sick, first is the doctor, (you) go to the hospital and see a doctor is most correct. (It is) most correct. (The person who) can treat your disease and save your life is the doctor. These are my feelings and my experiences. Secondly, (pause) you should find sustenance in mind and consolation, (you) pray to the Deity, go to pray and feel comfort. Otherwise, will you get well

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by only going to pray and 收驚 (spirit calling, doing the special ritual ceremony)? (It is) impossible. We need to have the knowledge of that…

Ms. Chu referred to religious therapy as an effective form of support. As she commented:

I feel spiritual therapy is more important…for example, I am reading Buddhist Scriptures…(I) believe a little in Buddhism…(it) calms

(my)

mind down…because when (I) just heard the news (diagnosed with cancer), (I was) shocked, I couldn’t sleep for more than a week. (I) worried about the children…my mum was frightened. (She) hurried to do 收驚 (spirit calling, doing the special ritual ceremony) and prayed. My friends also did 收驚 (spirit calling, doing the special ritual ceremony) and prayed. Anyway, doing the things they know. Put all (blessing symbols) on then… 平安符 (Ping An Fu, some kinds of blessing symbols)12.

In addition, some participants experienced the ritual of taking “Fu” water13. For example, Ms. Zheng stated: Somebody gives you “Fu” for you to take…“Fu” water.

平安符 (Ping An Fu): it is usually a silk or cloth pouch amulet filled with prayers written on small pieces of paper, pinned on a person’s clothes and worn for protection from evil spirits. 13 “Fu” water is often used for curing disease. People go to a Taoist temple assistant (Taoist priest) for blessed water which usually includes a piece of paper with some magic words written on it. People burn this piece of paper into ashes and add water. People either drink it or put it on clothes they wear. 12

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She further indicated she had taken “Fu” water twice. This is consistent with the Yeh study findings (2001) which investigated religious beliefs and practices of Taiwanese parents of pediatric patients with cancer and found that it is common for the parents to give “Fu” water to their children with cancer (p. 476).

Spirit calling, the wearing of blessing symbols (Ping An Fu) and taking “Fu” water are all religious activities engaged in to keep diseases away or to restore health. Hence, religious communal support may help some to increase their ability to cope with illness (Yeager, et al., 2006, p. 2229). Furthermore, religious practice or a desire to participate in communal events is believed to be a means to extend one’s life (Johnson, 2004, p. 19). In this study, communal religious practices, conducted in temples or at shrines, such as spirit calling, wearing Ping An Fu and taking the blessing water (“Fu” water) provide examples of such beliefs.

Further studies in this area illustrate the importance of these practices. For example, a study investigating the use of folk medicine among patients diagnosed with colorectal cancer in Taiwan found that 80.5% of participants used folk medicine which included addressing a deity, going to the temple and chanting the “A Mi Tuo Fo” (an incantation) (Lin et al., 1996, p. 40). Similarly, Du’s study (1992)

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investigated the cultural influences on medical behaviour of female breast cancer patients and found a high percentage (92%) of participants used religion as a form of NWM (p. 131).

Whether religious beliefs are practiced in an organised form or not, they present a world view that addresses questions about suffering and more broadly, life’s meaning. As noted, in Taiwan, religion gives guidance on how to live harmoniously with ourselves, others and with nature (Taylor, 2001, p. 198). Through various religions, using Buddhism and Taoism as examples, some specific rituals have developed.

Mr. Chen believed his religion could help him with cancer in various ways, as portrayed in the following account:

Our Lamaism…it is one kind of consciousness. (It is) possibly stronger on consciousness, the more possible to achieve your consciousness. Why? You have watched super power on TV. They rely on consciousness to achieve (things) (pause) and we used this (which is called) meditation. I imagined cancer cells were getting smaller, cancer cells disappeared. (I) used the consciousness to control cancer cells.

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(pause) and 迴向 (Hui Xiang)14. (It is) possible that I did something bad in the previous life or something else. (pause) (I) read some (scriptures) 迴向 (Hui Xiang) to 冤親債主 (Yuan Qin Zhai Zhu)15.

Ms. Han also followed similar practices although with the expectation that this would have a psychological rather than physical effect. As she illustrates here:

Religion, he (the master) asked you to read scripture and confess…yes, Buddhism, (they) think (the reason) for getting this disease, (it is) possible 冤親債主 (Yuan Qin Zhai Zhu) (in the previous life., (The master) asked you to read the scripture, confess and 迴向 (Hui Xiang). Mental support…yes, after (I got) sick, religion would naturally come along. Very strange, I didn’t know…I would pray before, but not so pious…

Studies suggest that the actions of Mr. Chen and Ms. Han are not uncommon among Chinese people with cancer. Yeo et al.’s (2005) study, which investigated the community beliefs of Chinese-Australians about cancer, found that some people with cancer attribute the cause to bad karma or to some wrongdoing in the present or

迴向 (Hui Xiang): Through certain kind of ceremonies, people usually practice scripture to give back blessing to the spirits. 15

冤親債主 (Yuan Qin Zhai Zhu): Those spirits to whom I owe to them in the previous life. 161

previous life (p. 179). As such, decisions about which treatments to use may be influenced by religious beliefs and practice. In the case of Chinese societies, such beliefs may include religious beliefs of “Inn” and “Ko” (cause and effect) (Chen, 2001, p. 270).

Chiu’s study (2000), which investigated transcending breast cancer and transcending death among Taiwanese cancer patients, reached similar conclusions; the idea of karma, originating from Buddhism, has impacted on Chinese worldviews for decades and cancer patients believe that they are able to reduce their suffering by undoing their mistakes in their past lives (p. 68). Because Taiwanese religious belief, the deity and ghosts may inflict disease upon humans, when modern medicine can not explain or treat the disease, Taiwanese people go back to religion rather than science (Zhang in Lin, 1992, p. 112; Chen et al., 2005, p. 63).

Religious beliefs may lead people to seek guidance from the Deity on the use of herbal medicines for particular situations. Du’s (1997) study on medicine, society and culture indicates that folk medicine and substances and folk therapies are inseparable and are usually combined with religious practices (pp. 152-153) or the so

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called folk perspective. In Taiwan, the combination of folk beliefs and the use of herbal medicine is a common occurrence.

In the whole sick process, one Deity asked me to take Qie Dong, the root of Qie Dong tree…another friend, she took for her breast cancer. (I) searched for the root of the tree. I was discharged at that time, (I) did not drink milk, (I) took that (the soup made of tree roots)…the Deity pointed out a particular one (tree)…we asked somebody to take us to find; that (place) is a very remote area. You won’t know it would have that sort of thing, it is hard to walk on the road. (Ms. Zheng)

Studies which have investigated Chinese populations with cancer (in Taiwan and in USA) confirm that religion is an important resource during treatment for their disease (Chiu, 2000, p. 68; Chiu, 2001, pp. 179-180). In addition, it is believed that these resources help in decision making and offer hope and consolation (Tatsumura et al., 2003, p. 69). As Holroyd (2002) argues, Chinese religion provides continuity, linkage, strength and hope and these are ‘acted out’ as health seeking behaviours (p. 742). Similarly, Yates et al.’s (1993) study on an Australian sample of patients with terminal cancer who were using alternative therapies found that a number of patients used psychic healers, attended Bible groups or used Reiki (p. 208). However, in contrast to the present study only very few patients in the above study used such 163

religious practices as a practical health seeking strategy.

Carone et al. (2001) argue that although religious beliefs may have a positive effect, on occasions strong religious beliefs can persuade people to reject medical treatment (p. 1000). However, this was not a finding of this study, although some participants did delay seeking Western medicine treatment. For example, Ms. Zheng and Mr. Chen looked to religious guidance before seriously taking on Western medical therapy.

In this study, religion informed participants’ decisions in two key ways. First, religion was used to influence treatment decisions and second, religion was used as an alternative therapy in itself. In the latter case, some participants adopted religion as an adjunct to Western medicine, while others viewed religious practice as separate from Western medicine.

However, some participants did not believe in the effects of religion and therefore there was little change in their religious actions after they were diagnosed. Mr. Yang further elaborated:

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(We do not necessarily) need to change (our) belief after getting sick. (Do we) need to change the belief?...I only take incenses to pray for the ancestor…Christians go to the church, Buddhists read the scripture. I do not do any of (these). (I) do not see these enthusiastically...

From the discussion of traditional Chinese philosophy and religious practices, the various healing beliefs and practices in Chinese society are well demonstrated. There are, however, other less obvious but important dimensions of belief systems that shape the meanings of illness.

Chinese Proverbs and Self Destiny

People’s beliefs and attitudes construct intentions to act or not act in particular ways and such intentions influence people’s health behaviours (Abraham & Sheeran, 2000, p. 8). Furthermore, people construct their worlds through their interactions with each other and within particular contexts. As we have seen, the health beliefs of Chinese people are drawn from culture and are grounded in the social context in which people with chronic illnesses live. Therefore, the influence of such beliefs is 165

inevitable (Hwu et al., 2001, p. 638). Along with philosophical beliefs and religious practices, the study has identified the importance of the dimensions of a belief in fate, the “will” of people with cancer and an ethos of “doing anything” where the participants will engage with any form of therapy available.

Belief in Fate

A sense of fate is important to the beliefs of people in Taiwanese society. Some hold an attitude towards cancer that it is a matter of fate. As Ms. Zhu stated “It is not the same condition for every patient. Everyone has his/her fate, it’s different.” Further, Mr. Lu said “I took (medicine) here, it gets better, I simply just take this. If things go wrong, you can’t do anything about it.” In addition, Ms. Zhang made the following comments about this issue:

I also feel strange. I do not eat so (outrageous). I am also careful about my diet. How come I get this (disease)? (I) am also careful about my diet sometimes. If things go wrong, you can’t do anything about it.

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There are similar findings from the Fee et al. (1999) research which investigated the health and social needs of older people in England. This study found that a belief in the will of God, fate or a matter of chance meant that it was impossible to prevent ill health (p. 49). Chao (1995) argues that the concept of knowing fate means an individual is aware of his/her destiny and will strive towards his/her ordained destiny. But knowing fate also means a person knows the limitations of one’s own force; the universe has the power behind one’s control (p. 149).

Some western studies define fatalism as “belief that some health issues are beyond human control” or “one’s actions cannot influence outcome, or cancer was a punishment for wrongdoings” (Conrad, et al., 1996, p. 941; Straughan & Seow, 1998, p. 85). While participants in the above studies were not cancer patients, their statements about fatalism reflect those found in this study. Importantly, beliefs such as cancer fatalism may influence decision making and responses of people diagnosed with cancer (Powe & Finnie, 2003, p. 461).

For example, some cancer patients in this study expressed the fatalistic belief that they would simply coexist with their cancer. Ms. Han sought the advice of a Chinese medicine doctor who explained the importance of NWM in sustaining a balance to

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the body:

He (the Chinese medicine doctor) said (it is needed to) coexist with cancer cells. Then, keep the balance. You don’t disturb it; it doesn’t disturb you. Then (you) have to take it each day as it comes…

Ms. Han also referred to a “coexistence with cancer”. She indicated “the children would be a trigger. (I) would be aggressive, continue want to live and see if (I) could prolong (my) life”. Such beliefs arguably reflect a fatalistic view that cancer is something to be accepted and that one needs to live with the disease.

In addition, Ms. Chu referred to the importance of “coexisting with cancer” when she used NWM. She reflected these beliefs in the following account:

I hope it can help by taking it (Chinese medicine). People always think that, as long as (cancer) can be controlled, as long as (they) can coexist with each other, (I) do not hope to destroy it or it destroy me. We like each other. I hope it (cancer) likes me. I like it (cancer). We can become one (and I) don’t want it to attack. Let me keep healthy like a tree sitting there and seeing children grow up.

Other people with cancer described the use of NWM as being consistent with the 168

philosophy of “taking each day as it comes”(一天過一天), as there is no certainty about the future. For example, Mr. Yang stated that “(I) do not think of those (curing the disease). (I) think (you) have to take it each day as it comes…”. This account similarly reflects a type of fatalistic view that while one can act to treat a disease, one also has to accept the responses whatever they may be.

The “Will” of People with Cancer

In this study and although some participants regarded the diagnosis of their disease or the progression of the disease as being due to fate, at the same time, most continued to actively seek treatment for their disease. Furthermore, although some participants expressed a belief in fate, volition or so called “will” was seen by some as being more important. The “will” of the individual thus emerged as an important factor in the response of many participants to cancer in this study. For example, some described the “self” as a key point in how one responds to a cancer diagnosis and its treatment: “Myself is very important…myself is very important. Yes, the thoughts of yourself are very important.” (Ms. Qin). Further, Mr. Chen also stated:

Keep in a good mood. Somebody said (they) couldn’t tell that I have 169

cancer. Do not worry that something is a nuisance…cooperate with the doctor as much as you can. Keep in a good mood. Don’t think that I have cancer; (I) mainly keep in a good mood. Do not worry that something is a nuisance…(this is) better for yourself…

Mr. Li refers directly to the importance of personal will:

Like the treatment, of course (I) handed over to the doctor, but (I) relied on my own will. (I) didn’t say that (I) got cancer, I am finished. Yes, you needed to cooperate with exercise, exercise not only Guo Lin Xin Chi Gong but also others. As long as you did exercise, the body would get healthy. (If you are) healthy then (you will) enhance immunity. Yes, (it is) true. It made sense. So regarding treating cancer, in the perspective of treating cancer, (your) own will is very important…that is to say (I) would fight with cancer. So you see Guo Lin Xin Chi Gong, it could, if you practiced well, it could fight with cancer, just like competition, I wanted to win over you...

A participant’s belief may be based on some sense of hope in the future such as the belief that cancer can be cured (Wright, Watson & Bell, 1996, p. 22). The concept of “positive mental attitude” in promoting good health has been explored by Fee et al. (1999, p. 58). Similarly, Hwu et al.’s (2001) study reported that people with chronic illness hold the attitude that positive thinking and an optimistic and moderate attitude 170

can bring internal strength to the body (p. 638). For some participants in this study, such positive thinking was an important feature of their approach to cancer.

I think the important thing is not what you take, but you need to be optimistic. You definitely think this disease can be cured, somebody was cured before. You will be the person who is cured. You should have confidence in yourself…I think (you should) build yourself in the mind. Somebody can be cured, so can I. (Ms. Zheng)

Furthermore, Ms. Xu made the following comments:

Attitude is very important…it is better to live well yourself…don’t worry all the time; the more you worry, the worse it is. I don’t worry at all. I live as usual and nothing changes. I won’t ask my family to treat me better. (I) live as usual.

Mr. He also reflected upon this issue:

Taking it easy on myself after (I got) sick. Taking it easy, taking it easy. (I) don’t think too much…Taking it easy is most important. The body is most important.

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Alexander (1990) argues that self is consciously essential because consciousness is able to achieve the self’s interest when some impediment to well being is confronted (p. 291). In addition, “will to live” has been described as a predominant attitude held when people face a disease such as cancer (Yates et al., 1993, p. 205). The impediment to overcome, in the context of this study, is “diagnosed with cancer”.

The findings of this study thus reflect, at times, the contradictory nature of people’s beliefs. On the one hand, people with cancer hold the belief that everyone has his/her limitations and fate is beyond one’s control. On the other hand, some believe that “will” holds the key when encountering cancer. Indeed, studies suggest people with cancer often convey the dilemma of experiencing feelings of fear while at the same time being strongly encouraged to “stay positive” by family and friends (Cordova et al., 2003, p. 465). The two concepts (a belief in fate and the importance of individual will), may appear to be contradictory (helplessness and positivism) and yet the concepts appear to coexist for many during the cancer journey.

For example, Mr. Li enthusiastically practises Guo Lin Xin Chi Gong as an approach of NWM when he faces cancer. Nevertheless, he also noted later on in the interview: “It’s a pity, I am finished. My third lobe in right side lung seems to have water in it.

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Even the doctor said it is fibrosed…”. In addition, while Mr. Yang decided to consult a Chinese medicine doctor about his illness, he also stated later that: “This disease is agonising, (I) resign myself to my fate.”

The above examples illustrate a philosophy that Jiang (1997) argues is characteristic of Chinese philosophy. That is, a positive perspective on the philosophy of life means that Chinese people fight diseases and natural disasters; they may blame God or man, but they still submit to the will of Heaven (pp. 44-45). Arguably, the fact that all participants in this study actively sought to do something about their disease (in agreeing to enter hospital and in using NWM), illustrates that these two beliefs can coexist and affect people’s responses to cancer.

The Ethos of “Doing Anything”

This study has found that people with cancer may be guided by traditional Chinese philosophy, religious practice or other beliefs, such as fatalism. For some people, a belief in the need to do anything they might when facing cancer was also described. According to Quah (2003), an “ethos of pragmatic healing” is that which

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“eschews conceptual analysis and the measurement of errors and biases, ignores the paradigmatic divide with biomedicine, and focuses on using whatever works” (p. 2009).

People in Taiwan do not clearly divide the health care system into two: science and non science. They may make multiple choices and for multiple reasons (Xu, 1992, p. 118). “Using whatever works” may explain why a person with cancer decides to use NWM during their cancer treatment journey.

In traditional Chinese medicine, the ethos of pragmatic healing is based on modification of therapy through clinical practice. This contrasts with the ethos of science where treatment is based on predetermined evidence. Traditional Chinese medicine may be considered to offer this sense of pragmatic healing that exists as an icon in Chinese culture (Quah, 2003, p. 1997). This ethos is reflected in the actions of participants in this study, such as Ms. Chu. Traditional Chinese Medicine focuses on what is wrong with the whole body rather than parts of the body and on disease as caused by a disturbance of Yin and Yang inside the body. The purpose of traditional medicine is, then, to restore these two components (Spencer, 1999, p. 6).

Because after all we are Chinese, (we) still believe in Chinese medicine.

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Then in passing (I) went to see him (Chinese medicine doctor). (I) may get help in Chinese medicine contingently…Chinese medicine may have a little bit help, help me to recover physical strength, help me to have more resistance (to disease), help me… (Ms. Chu)

Chinese traditions and beliefs inform the ways in which people view NWM and provide insight into why they use NWM. However, a diagnosis of cancer is generally a traumatic life occurrence and people typically experience a range of emotions and fears. These initial reactions to this serious diagnosis help to explain how NWM can be seen by some as a legitimate option in one’s attempt to respond to the threat presented by the diagnosis.

病急亂投醫 (You go anywhere and do whatever if it is a serious disease) the first time. That is my feelings. (It was) so painful at that time…(Mr. Jiang)

Similarly, people with cancer may also start to use NWM because the progression of the disease is unexpected. When people experience such unexpected circumstances, they may seek a range of treatment options. For example, as Ms. Shen experienced different phases in her illness, so her decision making and actions changed. In her own words: 175

I thought of myself as carcinoma in situ. I thought of doing the operation then chemotherapy just in case. It supposed no problem then. Later on, it was metastases to ovary; I thought that things are not so simple. (It) might be metastases again. Because of panic in mind, I tried something different. (It) might slow down or avoid it (metastases) happening again…I have used Brazil mushroom (巴西蘑菇), extracted Ginseng (人蔘皂苷), five elements vegetable soup (五行蔬菜湯) and XXX (brand name) nutritional supplements (XXX 的營養品).

One study, which investigated CAM use among colorectal cancer patients in Canada, found that the most important reason why people with cancer use CAM as an option is a desire to try everything available (77%) (Tough et al., 2002, p. 58). “A desire to try everything available” and “go anywhere if it is serious disease” is characteristic of the actions of some people with cancer in Taiwan in deciding their cancer treatment.

Ms. Xu referred to her emotional responses which reflected both fear and uncertainty in response to cancer:

I copied down his (a stranger who approached Ms. Xu and talked about 176

NWM) telephone number. Then, I asked my husband if it is true, my husband said we may try to call. My husband was more alert, he was more doubtful. We sick people 病急就會亂投醫 (would go anywhere and do whatever if it is serious disease). (We) would do anything. My husband stopped me later on; he said it may be a fraud. (We) were nearly cheated.

Ms. Zhu also indicated “只有生病的人才會急病亂投醫 (Only sick people would go anywhere and do whatever if it is serious disease)”. These participants have a desire to do anything to fight the disease. This is consistent with Algier et al.’s study (2005)

which

investigated

the

use

of

complementary

and

alternative

(non-conventional) medicine in cancer patients in Turkey. In this study, 36% of participants used CAM. Of those participants, 18.9% indicated that they were “doing everything possible to fight the disease” (pp. 142-143).

The study which investigated the use of complementary and alternative (non-conventional) medicine in cancer patients in Turkey, also found some people reflected a belief that “it may be helpful, at least it is not harmful” (Algier et al., 2005, p. 143, p. 145). Furthermore, Scott et al.’s (2005) UK survey on the use of complementary and alternative medicine in patients with cancer also reported that the

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participants (24%) held the view “might help, can’t hurt” (p. 135). Similar findings were revealed in this study.

Behaviours are enlightened by past actions, present situations and a will to find solutions to the problem (Mead in Millers and Hintz, 1997, p. 89). The fear associated with a cancer diagnosis gives rise to beliefs that it is better to do anything than nothing. People are willing to actively seek a range of treatment options to be participants in the process of healing (O’Callaghan & Jordan, 2003, p. 31). As Mr. Chen stated when asked why he tried various NWM treatments:

死馬當活馬醫 (It is better to try anything than try nothing), it is so effective for other people. This medicine is not so expensive, so I tried. (I) won’t die anyway.

The sources of this strong desire to seek a range of treatment options are numerous. They include a strong desire to avoid death. Also, family caring responsibilities provided the impetus for some people to pursue every avenue of therapy. This was the case for Ms. Chu who explained that her concern for her children was a strong source of will to respond to her cancer. She stated: 178

(I) do not know the effect. It can be said as 死馬當活馬醫 (it is better to try anything than try nothing)…(I) hope I can get well sooner, because my youngest child is only eight years old. I can’t leave them (children) all alone, so will is important, too.

You go anywhere and do whatever if it is a serious disease (病急亂投醫) and it is better to try anything than try nothing (死馬當活馬醫). When people face health problems that do not go away, they may pursue remedies or therapies from different cultures or healing systems in an attempt to resolve their particular health concerns. The Scott et al. (2005) study, noted above, revealed that people with cancer (41%) want to do everything they can to fight the disease (pp. 134-135). Thus an “ethos of pragmatic healing” exists where he/she is not concerned with measurement of outcomes or evidence of biomedicine and only focuses on whatever is working or available (Quah, 2003, pp. 2008-2009).

This concept of pragmatic healing continually emerged in the data of this study where participants sought multiple forms of therapy. For example, Ms. Chu used the phrase “多管齊下 (employing multiple methods to achieve one goal)”. Chiu’s study (2001), which explored the spiritual resources of Chinese immigrants with breast 179

cancer in the USA, reported that alternative therapies were used as they were believed to achieve better results (p. 180). In addition, Du’s study (1992) of the cultural influences on the medical behaviour of the female breast cancer patients found women with cancer employed multiple methods of cancer therapy during their hospitalisation. Ritual ceremonies and diet therapies were mostly used (p. 127). Employing multiple methods to achieve one goal (多管齊下) may be one of the many ways people respond to a cancer diagnosis.

For others, NWM represents “a ray of hope” (一線希望) when other treatments appear to be adverse in effect. Using Chinese medicine as an example, Ms. Qin made the following comments about this issue:

I do not have particular thoughts…somebody told me that many people went there, so I went (the Chinese medicine clinic). The situation is that (you) hold a ray of hope. Because after you had chemotherapy, the body became worse. I saw many people did not finish (chemotherapy) and die. The bodies of some people became very bad. (Chemotherapy) kills cancer cells; it also kills body cells, too.

Also, some participants just simply want to optimise their chances. For example, Ms. Shen stated: 180

(I) want to give myself more chances. Because when they (NWM product promoters) talked about these, counted as alternative medicine, they also offered a lot of eyewitnesses, (I) felt since they had those eyewitnesses, it might be not without any sense. (I) felt that (they, healthy products) also worth a try.

Some participants saw NWM as the last weapon in the struggle with cancer. As Ms. Zheng stated in the following account:

Many people, many patients, no matter if they have cancer or whatever, would search for folk remedies when they encountered these sort of things. In fact, my father had many folk remedies, but my father said that he still insisted on trying the doctor first. If the doctor didn’t work, (we) would start to use folk remedies.

Some western authors have suggested people with cancer may adopt different treatment approaches, because they seem to provide more self-control and hope. For example, where there is a belief in individual control over one’s health, NWM may be chosen because it enhances a person’s sense of control (Ade & Yarbro, 2000, p. 618; Astin, 1998, p. 1548). Moreover, some patients may want to participate more 181

actively in their own healing process (Adamson, 2003, p. 112), while others may perceive that they have nothing to lose by using NWM (Boon et al., 1999, p. 647). It has also been suggested that while some people use NWM in conjunction with conventional medicine, in other cases, patients believe NWM provides a new opportunity to confront their disease when orthodox medicine has failed (Clavarino & Yates, 1995, p. 267).

Yet, people do not always use NWM because they are desperate. Most also believe that NWM is able to prevent cancer spread and alleviate symptoms (Tough et al., 2002, p. 58). Although participants spoke of “doing anything” or “using whatever works” in their cancer treatment journey, this does not mean literally doing anything. In this study, many of the participants mentioned that other people propagated information regarding forms of NWM through word of mouth. Another group of participants noted that they actively pursued information on NWM and made decisions about the therapies that they were prepared to engage with. Ms. Han is a good example of one who was not prepared to try anything.

Of course many people introduce Chinese medicine and herb medicine during the process. My important organs are not affected, so regarding

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those herbs, nobody yet used in the clinical, through word of mouth, most of them I won’t try. Yes. I am afraid to increase the burden of my body, so I am not trying anything that others introduce. I will give a thought.

Therefore, people with cancer do make decisions about NWM within the parameters of a long tradition of its use and these decisions are further mediated by such factors as the stage of the disease, family traditions and social and community influences.

In conclusion, the concepts of “doing anything” and “trying different actions” as noted above, are influenced by interaction with various social contexts and experiences, such as traditional Chinese philosophy and religious practices.

Summary

The dimensions of philosophical beliefs addressed in this chapter provide insight into the context within which the participants form meanings about cancer treatment and more so into the social process whereby the participants act on these meanings.

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Thus people with cancer engage with Chinese philosophy, religious practices and old sayings and beliefs in negotiating actions towards cancer treatment. The dimensions also expand to the context of other social relationships of the decision making process including family, community and health care professionals. These themes will be further discussed in Chapter 7.

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CHAPTER 7 Social Relationships

We have addressed the process whereby philosophical beliefs mediate decisions to use or not use NWM among people with cancer in Taiwan. Philosophical beliefs, furthermore, appear as a connecting point for other social relationships that further influence people with cancer in Taiwan as they interact with NWM.

Social action, as Blumer (1969) has argued, consists of “individual and collective activities of people who are engaged in social interaction” (p. 54). Activities are formed by observing the activities of others within groups that may be as small as a family or community, or as large as a nation (Blumer, 1969, p. 54). And so human activities happen in situations and are related to communication; communication is intrinsic (Maines, 2003, p. 6). The communication of experiences is a pivotal element in the formation of people’s concepts (Blumer, 1969, p. 159).

The focus of this chapter is on communication, social relationships and associated social interactions as they are shaped by family connections, community connections 185

and professional relationships and practices. This provides a context for broadening our understanding of the ways in which the person with cancer adopts various treatments during the cancer journey.

Family Connections

Family can be seen as integral to the original units of all societies. As Bubolz (2001) argues, the functions of a family act as “the glue” that assists other segments of a social-economic system to operate simultaneously (p. 129). Furthermore, the functions and formations of a family are influenced by social, cultural, economic and political systems in particular cultural and geographic contexts (Kuroda, 1994, p. 54). The belief systems that emerge within such contexts develop our identities within our families, community, and professions (Wright, Watson & Bell, 1996, pp. 19-20).

The definition of the family is vague and may contain a lot of meanings depending on the study context (Allan & Crow, 2001, p. 2). Becker and Charles (2006), for example, define family as family of origin, including parents, siblings and a range of relatives. But these authors found in their study of the meanings people attribute to family that some referred to friends as “like family” which inferred a particular

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quality of relationship (p. 107). However, the understanding of family, according to the participants and in the context of this study, is one of a domestic group with common ancestry and in-laws.

As argued previously, philosophical beliefs emerge in this study as the focal point of Chinese social systems and one of the most dominant belief systems, Confucianism, is the guiding framework for family traditions. Confucianism gives primacy to responsibility for others over and above individual rights and therefore human relations over individualism (Degui, 2005, p. 129). Huang’s model of “face and favour in Chinese society”, which explains human relationships based on relationship closeness, demonstrates that the first level of influence in Chinese society is often the relationships between family members or other congenial groups (Huang, 2000, pp. 224-225). This is reflected in Lu’s study (2002) which found that a sense of obligation to significant others is considered essential to well-being in Chinese communities (p. 179).

Social interaction is therefore embedded in what Lu (2002) refers to as “the supremacy of collective (social) welfare over individual desires” (p. 187). This in turn positions the family as the foundation of the society (Hsieh, 1967, p. 175) and as

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central to life (Lu, 2002, p. 182). Thus Confucian values translate into reciprocity, mutual respect and thoughtfulness between family members and thus an interdependency in terms of responsibilities and obligations to other family members (Bowman & Singer, 2001, p. 461; Bubolz, 2001, p. 131). In addition, Confucianism underpins the family structures of Chinese people (Jensen, 1997, p. 14) and we understand that social relationships include social support and family functioning. The family usually provides the primary and most important of our social relationships for most people (Franks et al., 1992, pp. 779-780). The dynamic of such relations includes engagement with earlier experiences and this demonstrates the importance of the past. Parents or their ancestors are seen as a shelter for the individual (Isay, 2005, p. 443).

Family connections and belief systems have a strong influence on individuals. For example, one study on understanding Canadian South Asian women’s experience of breast cancer reported that most women indicated that they obtained much family support and that family was also involved in decision making (Gurm et al., 2006, p. 7).

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When making a decision on disease treatment or the use of NWM and in contrast to the dominant individualism of Western cultures, family opinions often have precedence in other modern and traditional cultures. Many Korean or Japanese families, for example, when informed of a relative’s diagnosis, will make decisions about treatment (Kemp, 2005, p. 47). In this study, the family, although not appearing as the decision maker, plays a paramount role in the process of decision making over the use of NWM. The experience and actions of a family interact with decisions to engage or to not engage with certain practices such as the use of NWM. As Mr. Sun explained:

My father brought it (healthy product) (to me). My father bought it regularly. My father takes it (and), he feels good. He introduced (it) to me. He brought it to me; how much; I gave him the money…

Ms. Zhang’s husband sought to persuade Ms. Zhang to use Chinese medicine because of his past positive experience. He stated:

He (the doctor) said to inject interferon first, (and he said the patient) will be in agony after the injection. If there will be agony, (better) to take Chinese medicine at home to live at home. It is better to live at home taking Chinese medicine rather than staying in the hospital suffering. 189

Then, (we) went home. Ms. Zhang continued on to say: (My) brother said we don’t have to stay there (the hospital) and be in agony.

Furthermore and in reflecting a sense of obligation, participants make compromises with others over decisions on NWM. For example, Mr. Jiang stated:

(I was) forced by my mum continuously, (I was) forced to take this (healthy product). She forced (me) after I was sick. She surrounded you. You don’t have other ways to go…

The above quote reflects the emphasis Chinese society places on the family system and especially on the relationship between parents and children (Hsieh, 1967, p. 175). It is expected that since parents have invested so much to raise their children, those children will show their appreciation through respect for their parents (Liu-Wang, 1959, p. 85). This is evident in Taiwanese research that demonstrates the importance of filial piety (Lin et al., 1996, p. 41).

The tenet of filial piety, one of Confucianism’s central thoughts, is an essential component of Chinese society and the whole Chinese cultural tradition (Hwang, 1999, p. 163; Cheung et al., 2006, p. 618). The Confucian idea of filial piety or xiao is based on the fact that one exists solely because of one’s parents. There is a 190

requisite obligation expected of children to respect, support and be loyal to parents (Hwang, 1999, p. 169).

We see therefore the importance of the interactive context of families. Illness is experienced within interpersonal contexts that create people’s beliefs and behaviours (Wright, Watson & Bell, 1996, p. 23). Although this is a universal phenomenon, in the Chinese social world, as noted, collectivism presides over individualism. Therefore, it is understandable that the processes of illness in a family, experiences of NWM and the use of NWM and their interactions with each other will shape the experiences of people with cancer. Ms. Qian made the following comments:

My husband died in (Min Guo) 85 (1996); (he) died of esophageal cancer…(the)doctor said (we) need to do the operation. His brothers and sisters stopped me and said don’t operate, don’t operate. Then it was delayed (pause) for three months (and) my husband took Chinese medicine for three months. It took six months in total, half a year, from the diagnosis to the time he died… His sisters hurried to get him to take Chinese medicine and said (to him) somebody also had hepatoma and was cured by taking Chinese medicine. (His sister) also took him to take Chinese medicine for half a year but it got more serious. Later on I found (I had) leukaemia the next year. Many people said to me to take Chinese

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medicine, take Chinese medicine (but) because of my husband’s experiences, I was afraid.

Mr. Wei and his aunt, both of whom had been diagnosed with cancer, shared their NWM information. As Mr Wei stated:

My aunt, she was a patient here, too. She had lung cancer. She had been diagnosed for more than six months. She finished her treatment…she always took that (four herbs). She didn’t know Niu Zhang Gu (one kind of mushroom, 牛樟菇) before. She started to take (them) when I started. She started to take Niu Zhang Gu, so she recovered very quickly.

Here we see that a combination of interaction and reflection determines action. A person’s insights may be influenced by external factors and his/her actions may be affected by other people’s behaviours (Moldoveanu & Stevenson, 2001, p. 305). In this case, it is the participant’s own family.

If a family holds strongly to beliefs surrounding NWM and those beliefs are compatible with a dominant tradition, the family will support a member’s use of NWM. Views on Western medicine and NWM are influenced and gain legitimacy 192

from different structures within a community. When a profession is legitimised by society and the practice is congruent with the dominant values in the society, a profession enjoys a high degree of authenticity (Lee, 1981, p. 269), such as Chinese medicine.

Mr Chen and his mother talked about their faith in Chinese medicine:

Mr Chen: My grandfather, he was a Chinese medicine doctor… he has passed away already. When (we) had some difficult symptoms, (we) went back to ask him. He gave us Chinese medicine. It is useful….

Mr. Chen’s mother: After I deliver the baby, I can’t even sit for a meal, (I) want to lie down quickly, (I) can’t stand the sore (on the back). (I) called to ask my father-in-law. He said it was simple, only a few (Chinese) medicines. I took two prescriptions with pig tail bones. I got well.

The Confucian principle of obligation extends to all aspects of family relationships. Because, as Hwang (1999) points out, family members “are conceived of as a whole body”, they are compelled to share their resources with each other including “wisdom” (p. 170). For example, Ms. Xu’s brother-in-law shared NWM information with her. Her comments are as follows:

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My brother-in-law suggested to me to practice Fa Lun Gong later on…he sells noodles. The Fa Lun Gong people chatted with him. My brother-in-law’s attitude was not very good. He thought the people who were seriously ill, practiced Fa Lun Gong…He knew I got this disease after a few days…He (brother-in-law) asked me if I wanted to practice then; I started to practice Fa Lun Gong…I used to eat white sweet potatoes’ leaves…my father-in-law read 善書 (Shan Shu, morality books published by temples), there is an interview inside; that person was cured, actually cured…

Similarly, Mr. Wei also shares the family views on the use of NWM. This is evident in the following comments:

It is quite normal that (my) family members take Chinese medicine. Families originally accept Chinese medicine so we won’t repel Chinese medicine in our family. I think Western medicine is for emergency. It is necessary to deal with Western medicine in serious conditions…regarding nourishing the body or some small diseases, my family use more Chinese medicine.

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Furthermore, as another participant commented:

They all said that healthy products won’t harm the body. If (they are) taken continuously, it will show better results on the body. Because friends were talking and my father also encouraged me, I decided to take (healthy products). I feel the result is not bad after taken. (Mr. Sun)

If people have a regular source of care such as Chinese medicine and have families who favour Chinese medicine, they are more likely to seek this sort of therapy (Chi et al., 1997, pp. 47, 49).

It follows from the above that where a close family member is diagnosed with cancer, relatives will seek to provide tangible help, such as NWM, to show their support.

My aunt bought two small tins (of milk products) and then another big tin…my daughter said we almost can open a shop…somebody bought for us, (they) brought to us to eat…we did not buy it ourselves, all somebody gave to us…it is true that those (things) are expensive, but somebody bought for us, we did not buy it ourselves…they (the relative) would buy a lot of things such as concentrate chicken soup, good friends and relatives bought all for us…those milk products take years to take…many milk products, everyone bought a big tin, some two (tins)…I said to them don’t

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buy any more…(Mr. You)

But in these circumstances, the reactions of cancer patients may vary. For example, if NWM is regarded as a nutritional supplement, it may be accepted. As Ms. Wang stated:

My body was weaker at that time; (my) children bought them (healthy products). They knew better what to take. They bought for me…the children help me…(I took) a blood test, white blood cells were very low. It can’t keep so low like that. My children said “can’t stay like that”… The children said later on “you do not have radiotherapy now; eat as much as you can”. I ate as much as I could. (I) ate whatever I could, (I) ate whatever I could…(my) children said “you can’t be without eating”… children bought all of them (healthy products); children bought all of these.

One of the Confucian filial obligations in families is to take respectful care of one’s aged parents and this view holds enormous sway in shaping Chinese perceptions of morality (Wang, 1999, pp. 243-244). Therefore, most elderly are taken care of by their family in traditional Chinese society. The affections of Confucian filial piety suggest that children provide not only respect but subsistence (Sun & Liu, 1994, p. 320). In addition, children have an obligation to help their parents or other family 196

members to sustain good health and general well being (Bowman & Singer, 2001, p. 461).

Mr. Lu was also encouraged by his family to take nutritional supplements:

My daughter works in ╳╳ company; my wife, too. Someone works there; (we) buy from them. If (it is) a birthday sale, it can be up to 50% or 20% discount…my wife and daughter keep asking me to take these (healthy products)…they encourage me to take these…I felt uncomfortable at that time, (she, patient’s wife) took back for me to take…yes, she already took (healthy products), my daughter took first.

The findings of this study suggest that where people with cancer are making decisions about the use of NWM, the family is a significant influence. Lim et al.’s (2005) Singaporean study on complementary and alternative medicine similarly found that family tradition is important regarding the use of NWM (p. 20). In contrast, the importance of family in decision making regarding NWM use by people in Western countries appears to assume a lesser role. As studies have found, in western cultures the influence of friends and acquaintances may be more significant than blood relations (Low, 1999, p. 108; Wellman, 1995, p. 225).

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Community Connections

As mentioned in the foregoing section, the first layer for an individual’s social interaction with others is often family. Yet, people also live in a community. How community interaction shapes behaviours, such as in using or not using NWM, emerged from the interviews. Holroyd (2002) suggests that “divisions between the individual and society commonly distort how health-seeking behaviours are enacted in a given culture” (p. 735). This simply means that we can not interpret the individual without understanding society and in this case, community. These social concepts are interrelated.

As with the family, a conceptual difficulty is ascertaining how far a community extends or what exactly constitutes a community. A community can be defined as people who live in a common area, share similar values, do various activities together and have high level of cohesion (Phillips, 1993, p. 14). In the context of this study, community is a social group of people who share life experience together, such as, friends, neighbourhood and other cancer patients.

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This sharing, as Blumer reminds us, is a process of ‘joint action’ where people take account of the actions of others and then relinquish an intention, postpone an action or have behaviour endorsed (Blumer, 1969, p. 8).

People gain information from observing directly to communicating symbolically. People think through obtained information, either consciously or unconsciously, and judge if it is useful (Flinn, 1997, p. 35). For example, some participants in this study who were given herbal medicine by their friends described more cautious responses. Although acceptance of the herbs was important, there was some ambivalence and uncertainty about the use of this form of therapy in conjunction with Western medicine. As Ms. Wu commented:

Somebody told me to take herbs. They gave (them) to me; I did not take. I did not dare take them. Somebody gave me (and) I said “thank you”, (I will) wait after finishing chemotherapy then (I) will decide if I take or not. (I am) afraid of medicine. (I) don’t know if it is good or not if (I) mix Western medicine and Chinese medicine together…they knew my situation and gave it to me. Friends knew what I had. (She) heard of such medicine, many people got cured after taking (this medicine). She encouraged me to take it. I received it, but (I) did not take it. Friend is kindness, I received it anyway, but I did not dare to take it. If we believed in Chinese medicine, I would take it. But we believed in Western medicine 199

now, then we believed in the Western medicine doctor. If (I) mix (them), will it be wrong? You don’t know which medicine makes you get better.

Mr. Chen expressed similar feelings:

That (Zhang Zhi Gu, one kind of mushroom) is for cancer. No, it is better for hepatoma. I also have it in my house; I did not take it. Friends gave it to me, it is also very expensive…(I) do not know if it is effective. I am afraid if I take it, (I) do not know the result after taking (it).

Blumer also reminds us that meanings are not imposed upon situations but given to those situations by those involved (Blumer, 1969, p. 134). For example, networking by women and especially those within similar groups, is a significant means of transmitting folk healing beliefs and knowledge (Sharp, 1986, p. 243). Ms. Zhang made the following comments about this issue:

I was (a volunteer) in the temple, at the very beginning. Those women friend, (one of those women), she took (Chinese medicine) and got cured for over twenty years, twenty years. She brought it for me…two of my friends, two friends took (Chinese medicine) and were cured. She heard of my situation. She came again and again to my house to ask me to take (Chinese medicine)…my thoughts, she already took more than twenty

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years. She has a determination to take more than 300 prescriptions, I would also have that patience. I have that kind of determination. God knows I can’t walk after taking (the herbal remedy). (Cancer cells) went to the brain. She was fine after. (But) she couldn’t do anything hard, but she could take care of grandchildren and cook three meals. That’s great.

Social networks focus on collective processes for example, sharing of community values and maintaining social control (VoyDanoff, 2001, p. 142). Where NWM has been observed to work well for others, this may induce people with cancer to try the same (Tough et al., 2002, p. 58). Mr. Wei was also influenced by the experiences of friends who had achieved impressive results from using NWM. Mr. Wei used NWM in conjunction with Western medicine treatment. He stated that:

(I) naturally accepted (NWM), but (I) still did Western medicine treatment, definitely chemotherapy. I thought cancer cells shrank very quickly by doing so (taking NWM). When I did the second chemotherapy, I was told by the consultant the cancer cells had disappeared, all of them shrank…He (the doctor) said I could drink it (Niu Zhang Gu, 牛樟菇, one kind of mushroom). I knew some friends; they did not do chemotherapy when they found (cancer). They did not do chemotherapy, (they) then went back take those herbs and took Niu Zhang Gu. After four to five months, (they) went back to the hospital for examination; cancer cells, the tumour, had disappeared. 201

Mr. Chen described a similar situation:

My father knew some people in Mainland China, (and) they said (pause) this person had business in Taiwan. (He, the friend of Mr. Chen’s father) was seen as useless (means terminal) by the ╳╳ hospital and asked his family to take him home. After he came back (home), he used this medicine (Hei Teng, one kind of herb), everyday until now. (He) is still alive. He had many kinds of cancer…many of them and many complications. He relied on this medicine to convalesce through care and nourishment. (He) convalesces through care and nourishment until now; he is still taking (this medicine).

People deal with an ongoing changing environment. The cancer journey is a dynamic process and within this process beliefs shift and change. Beliefs and actions are communicated, employed, tested and adjusted by individuals in real circumstances. Where something is working, there is a reason to continue to use it; if it does not work, then it may be changed (Charon, 2004, p. 167).

However, others who had observed poor results from the use of NWM were less likely to use this kind of treatment. As Mr. Shi stated:

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Some are suited to take (herb medicines), but some are not. One of my friends…he has acute leukemia; he said he took herb medicine. It costs NT 600 dollars a day. He took Chinese medicine, he did not take Western medicine. (He) did not take the doctor’s prescriptions. It takes no more than half a year, no more than half a year; he died…

Furthermore, in many cases people have learned about the NWM through interacting with others. Mr. Chen told the researcher that “In fact, the person who told us this medicine said this medicine is for cancer” and requested that the person’s name not be mentioned. Mr. Wei also stated: Twenty years ago, some friends got cancer, they said it is better for recovering by taking 牛樟菇 (Niu Zhang Gu, one kind of mushroom). This information can be seen as a form of “secret” remedy that is informally recommended to people with cancer.

Moreover, social reciprocity is impossible without consciousness, planning and scenario building (Alexander, 1990, p. 288). People with cancer may develop informal groups to support each other in using NWM during their cancer treatment journey. This kind of community support provides informal help and allows exchange for experiences within a network (VoyDanoff, 2001, p. 150). People with cancer in the community who hold similar beliefs may gather together, talk and 203

encourage each other. For example, Ms. Qin stated:

They (the patients in the clinic) all had chemotherapy. I met several of them. We got to know each other there. They finished chemotherapy. During chemotherapy, they took his (the Chinese medicine doctor) medicine, then, they continued (to take it). They finished chemotherapy and they continued to take his medicine. (They) are quite well now…I have seen several (of them). After they finished chemotherapy…(they have) only regular check ups and keep taking Chinese medicine.

Ms. Xu also referred to her experiences of support groups. She said:

I attended their ritual meeting (Fa Lun Gong). A terminal cancer patient, the doctor said to him that he only had four months to live…he (the patient) said only four months to live. The first year I saw him, he said he lived four days more. Next year, I was wondering was he still there? I attended again, he was still there, in very good health. I went the end of last year, he was still there, already three or four years. I knew and saw him the first year. Now (I) see him again, in very good health. He is a veteran. He is in very good health, (his) face colour is quite good…they have ritual meetings every year and exchange what one has learned. How is your practice? Everybody talks.

Chan’s (2005) study also indicates the power of community traditions. As noted 204

previously, although Western medicine came to dominate in Taiwan following World War II, the use of traditional Chinese medicine has remained a fundamental part of Taiwanese life. Chinese medicine products in herb shops are popular because some tonic herbs, such as, Danggui (Radix Angelica sinesis) and Renshen (Radix Panax ginseng) are commonly used in many Taiwanese families (Chan, 2005, p. 3).

As noted above, community traditions and beliefs spread, when needed, gradually like a stone put into a pond and this is evident in ways that the participants perceive their interactions with other people with cancer. Mr. Li stated:

All cancer (patients) were on that floor, when (they were) walking, there is no vitality. I held an IV stand, another hand did breathing exercise, the hand was moving. Sometimes some people saw and asked “what is this, what kind of exercise?” I told them where (they) teach this. Then, after a period of time, you practice by yourself…I went to meet almost twenty (people). We chatted with each other, they were same with Guo Lin Xin Chi Gong. Whichever disease you have, (you) face west or (you) face east. They had certain rules. Like me, nasal pharyngeal cancer (NPC) faced west…when (I) practice, people would look. I introduced (Guo Lin Xin Chi Gong) to somebody. Sometimes, other patients in the same floor had that treatment and had cancer cells. When he saw me, (I) seemed not to have the disease. (He) asked me or my wife. I said I practiced Guo Lin

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Xin Chi Gong…

Moreover, Mr. Feng shared his experiences of using NWM with other cancer patients:

If you are sick of food, few people eat that (milk, nutrition supplement) if (you are) normal. Later on in the basement, I went to do radiotherapy. One person had retired from government, he has nasal pharyngeal cancer. He was in the same situation…I introduced him to take that (nutritional supplement).

Some participants share the positive experiences of others in order to provide support in the struggle with cancer. As Ms. Chu stated:

I heard something that day. I don’t know what he took…I felt sad that day, I went to chat with others in the outpatient department. He just saw us chatting, he would like to share the happiness. (They) then came to talk with us, “my husband has lung cancer or some kind of cancer, stage III, he is cured. Then we said to him “congratulations”. He was very happy then; she took her husband home…

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Other people’s influences are significant and community support is therefore very important in the cancer patient’s journey. Mr. Yang noted:

(I) thought of life later on; many people suggested to me “don’t be in so much depression”. (I) still need to walk out, see people, see (the doctor) in the hospital or take Chinese medicine…

Furthermore, Ms. Qin also made the following statement with regard to use of Western medicine or NWM. Community support is very important:

I saw many people…some did chemotherapy. He felt very uncomfortable. Then, he couldn’t eat anything and was very low emotionally. (The situation) is not good, so (he) couldn’t eat anything. Just like no hope. Because for somebody after doing (chemotherapy) the body gets worse and worse and then in very bad emotion. Oneself is very important; people around are also important. The importance is for people surrounding to encourage him/her.

Being able to share the experiences and information and gain support from peers, especially other cancer patients, is essential. Gurm et al’s. (2006) study shows that being able to talk with peers provides strength and encouragement. As women said in 207

the study “…with the exchange of ideas; you also feel relieved and know new things. We can share each others feelings, whatever good or bad” (p. 8).

Community social cohesion is an important source of qualitative support that extends beyond an individual’s family and friends (Mulvaney-Day et al., 2007, p. 479). Family, friends and media, including television and the internet may be factors that construct patients’ treatment decisions (National Breast Cancer Centre, 2003, p. 56). For example, through word of mouth communication, patients obtain information from their family and friends about a range of different approaches to managing a health problem. Such social interactions may directly or indirectly influence patients’ decisions along their cancer treatment journey.

Through an examination of family and community connections, we understand that human actions are not simple. People encounter incidents everyday and the meanings of all sorts of things go through an interpretative process. Nevertheless, in Blumer’s terms, interpretation should not be seen as the automatic imposition of meanings but a process of meaning being actively used as a guide for action (Blumer, 1969, p. 2, p. 5). The above testimonies of study participants are pertinent to this concept.

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As has been argued, family and community connections are important bindings in Chinese society. In accordance with Confucian values, Chinese clan rules combine with practical experiences and realities; they include parent-children relationships, relationships between brothers, marriage relationships, clan relationships, friendship and community relationships (Liu-Wang, 1959, p. 84). All contribute to the social milieu of family and community connections as found in this study. This social milieu is a complex and continuous interplay of consensus and change. Individuals reconfirm or add to that consensus through their actions and interactions which may both authenticate past experiences and adjust what is known (Charon, 2004, p. 167).

We understand, therefore, that individuals and society can not be separated. These are simply different stages of a social process. A further social relationship and stage in the social process under this study is that between the healthcare professional and the patient.

Professional Relationships and Practices

Relationships between people with cancer and health care professionals emerged as a key factor in determining treatment regimes as far as Western medicine treatment is

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concerned. However, this study also determined that people living with cancer may or may not discuss the use of NWM with their health care professionals. The participants of this study were all interviewed in Western medicine care settings, had all been admitted to a Western medicine hospital for treatment and had all used NWM at some stage in their cancer journey.

Western medicine assumes a leading role in Taiwan’s health care system. Traditional Chinese Medicine still takes a subsidiary role in Taiwan16 (Chi, 1994, p. 307). According to the Taiwan Public Health Report (2001), one hundred and twenty seven teaching hospitals were accredited by the Ministry of Education and the Department in 2000, twenty eight of which have Chinese medicine departments. In addition, there are two Chinese medicine public hospitals and eleven others have Chinese medicine departments (p. 35).

In the context of this study, the health care professionals that participants were referred to were mainly Western medicine doctors. Some participants clearly indicated that they would not try non-western therapies without a doctor’s permission. For example, Ms. Wang had permission from a Western medicine doctor before she 16

This is evident in figures which show that in 2000, the number of physicians in practice was 29,585 compared to 3,733 practicing Chinese medicine doctors (Department of Health Taiwan, 2001, p. 22). 210

went to see a Chinese medicine doctor within the same hospital.

Somebody induced me to take something. I did not dare (to do it)…Yes, many people (induced me). Somebody said take something to get well, take something to get well. I just said (I was) treated here (in the hospital)…that is Chinese medicine here (in this hospital), then I went, if (it is) somewhere else, I do not dare to go…the tumour doctor, I asked him. May I go (to see Chinese medicine doctor)? (He said) yes…(we) need to ask, (the doctor said) yes, then we go. You can’t go to see (Chinese medicine doctor) without asking. It is not good if the medicine (you) take that conflict (each other)…

A reason for informing a doctor was the fear that the different forms of therapies would counteract each other. Other participants did not discuss the use of NWM with the doctor directly. But rather, they posed more general questions with doctors. For example, Ms. Zheng stated:

I feel many people are taking healthy products. I asked the doctor “can I take healthy products?” He said if it is like 亞培 (nutrition product, brand name) to supply calcium. I said many people said wheat grass and organic things may help the body. He (the doctor) said it’s fine to try a little bit, don’t rely on it. I feel so, too. In addition to listening to the doctor, that is additional. It’s fine to take a little bit, (I) still do (what) 211

the doctor (says) as possible…

The fear of disapproval was a reason for “forgetting” to tell the doctor about the use of NWM. As Ms. Zhu illustrated here:

No, I prepare to tell him (the doctor) now, (I) wanted to ask him this morning, (I) forget again…patients will always be afraid that the doctor (will) stop (us using NWM)…(I) eat by myself quietly. These few days, my sister and I went down stairs; we just happened to see the doctor. My sister suggested to me to tell the doctor. I said O.K. You go and ask him. Every time I want to ask, then I forget. After telling the doctor some questions, then the doctor was gone, (I) forgot something else. (I) forgot something else. Usually (I would like to) tell some of my little problems. I forgot, too.

However, Ms. Qin described her doctor’s reactions when she discussed NWM:

(I) did not mention before in XX (hospital). But recently, several times (I) had conversations with the doctor and mentioned it (uses of NWM)…he (the doctor) had no reaction…he (the doctor) just listened and passed.

It appears, therefore, that people may not communicate about use of NWM with their 212

health care professionals because they are afraid of a negative response.

A further reason was that nutritional supplements were not considered “real medicine” by participants and therefore not the concern of medical doctors. As Mr. Jiang stated:

It is not necessary to tell the doctor. I directly take (nutrition supplements). I (took them) when I was resting at home, (I was) not taking them during chemotherapy period. I took them when I was resting at home…

Ms. Shen also made the following comments: Because I felt I was only taking nutrition products, they were not medicines, they were supposed to be fine…Studies show that people do not think it is necessary to inform health care professionals about their use of NWM based on the view that it will not influence current treatment (Robinson & McGrail, 2004, p. 93; Stevenson et al., 2003, p. 521).

Indeed, doctors at times did disapprove and this experience encouraged the withholding of information on NWM. Mr. Shi made the following comments:

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He (the doctor) asked me not to take something as I like…Doctor ╳╳ told me if you took herb medicine, I won’t treat you. I quietly took healthy products, (I) then stopped after half an year.

Furthermore, the sense that if “the doctor did not ask, don’t want to tell” also emerges from this study when people with cancer were asked about the communication regarding NWM. Although NWM is accepted by many Taiwanese, the evidence above suggests patients do not readily discuss their use of NWM with health care professionals. As such, the use of non Western medicine is often not known by health care professionals in Taiwan (Xie, 1998, pp. 172-173). Several studies (Nam et al., 1999; Powell et al., 2002; Rao et al., 1999) have also found that a lack of inquiry from the health care professionals is one of the main reasons people do not discuss NWM with health providers. In addition, Lim et al.’s (2005) study on complementary and alternative medicine (CAM) use in multiracial Singapore reported that 74% participants did not discuss their use of CAM with their Western medicine trained doctors (p. 19).

On the other hand, Stevenson et al.’s study (2003) reported that only four out of sixty two participants receive positive responses from their doctors regarding their self treatment with NWM. Other participants found that their doctors generally reacted 214

with “right” “yeah” and “mm” (p. 522). In addition, practitioners may not support the use of NWM and that they may seek to convince them against the utilisation of NWM (Robinson & McGrail, 2004, p. 93).

The interactions between people with cancer and the health care professionals may also lead people to try other options, such as NWM. For example, Ms. Zhang stated:

He (the doctor) said (for) your (disease) there is no medicine to treat (you). I think (it’s) fine. (I) came back to take Chinese medicine, to take Chinese medicine.

There is a perception that Western medicine causes sickness and that is why some refuse this treatment. For example, Ms. Xu saw other cancer patients’ situations in the hospital. She focused on trying NWM and stopped all her Western medicine treatment. As she stated:

No, I did not come for treatment, I did not come at all…because when (I went) to the hospital, I saw many people the same as me. Not long later, they were in wheel chairs. I felt very uncomfortable after I saw them…so (I) was scared after I saw (them)…Now (I) walk, almost can’t climb up stairs…climbing to second floor, (I) need to have a rest. (I)

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can’t climb up…(my) heart was exhausted and short of breath, my husband kept asking me to come (to the hospital). Then, I came for an examination.

The following testimony was also reflected by Ms. Zhang:

No, I did not come then…I did not come, did not come to the appointment…(I) can’t walk when I come (again to the hospital), (I) have a hope to let him (the doctor) treat. (I would) talk about others when I could walk…if it is very effective after I took at home, I would tell. I came here to be treated because of a bad effect after taking (NWM) …If I felt it was effective after taking, I would introduce others.

Other people with cancer do discuss the use of NWM with their doctors. For some, this was to obtain an assurance from doctors that they can use NWM and that doctors approve of what they are using. As Mr. Zhao stated:

I also gave to Dr.╳. He knew the benefits after taking this (nutrition supplement). This is not cheating, not like direct selling. Let me explain, if this is a good product, we should share with other friends. It can take care of our body…during the New Year’s holiday at that time, the doctor did the surgery on me. After three days, I went home for Chinese New Year, although Dr.╳ said no. He was very worried about me. When 216

I came again, (he) said “why is your complexion so good?”, I told him “I am taking this (nutrition supplement).”

Mr. Wei communicated with doctors regarding NWM and the doctor was aware. He reflected in the following account:

He was hoping that I finished all chemotherapy treatment. It may be better not to recur later on. I then follow the doctor’s instructions. When I stayed at home, the doctor knew I was taking 牛樟菇 (Niu Zhang Gu, one kind of mushroom). I kept taking then…

A doctor’s attitudes towards NWM may be tested by people with cancer. In other words they seek to determine the doctor’s position on NWM. For example, we see the tension between scientifically based medicine and other therapies in Mr. Feng’s communication with a doctor.

(I) wanted to take Chinese medicine at the beginning…╳╳ (doctor), do you know? He resigned in August. In fact, at the cancer appointment, he told me “don’t listen to the folk’s secret remedies”. They have no bases. It makes sense what he said. If (they) are good, take them to the

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hospital and do experiment, nobody is sick then…he reminded me of this point when I went to see him.

This tension is also evident in Mr. Chen’s experience:

Doctor ╳ said there was no clinical experiment for that medicine (extract from ginseng, 人參皂苷). He did not know (the effect) and the price is high. He asked me not to try. He said I could try Chinese medicines which were cheaper. Go ahead to take those and take care of myself. He did not suggest to take that (extract from ginseng, 人參皂

苷).

In referring to the influence of a doctor on a decision to use NWM, Ms. Shen noted:

If the doctor said to me (it) (NWM) could be tried, I then try. If the doctor said it (NWM) might not help, I might also try, because no help at least is no hazard. (It) still has the possibility to try.

The above data suggests that if health care professionals support the decisions of 218

cancer patients to use NWM, patients will often try these therapies. However, if health care professionals do not agree with the use of such therapies, patients may still be willing to try NWM and will be encouraged to make such decisions themselves.

In addition to NWM use, some people with cancer believe there are certain diet taboos in Asian culture. Therefore, even where a health care professional says “you can eat anything”, cancer patients still tended to follow diet taboos. As Mr. Chen reflected in the following account:

He (the doctor) said you can eat anything; it’s fine. Nothing you can’t eat. (You) can eat anything. Western doctors are like that. (They) ask you to take care of your nutrition status and don’t be fussy about food…I still think that it has credibility (寧可信其有) (diet taboos)…

The Chen et al. (2005) study on attitudes of patients with malignant brain tumours towards food and alternative treatment found that 7.1% of participants had diet taboos before being diagnosed with cancer and 77% of participants had diet taboos after cancer diagnosis. More than two thirds (77%) thought meat and sea food were “poison”, especially duck and goose’s meat. This concept of diet taboos among 219

people with cancer came from themselves, family and friends (p. 62).

Some health care professionals reject NWM treatments, while others adopt an open attitude and support cancer patients’ use of NWM. Mr. Wei made the following comment:

He (the doctor) said if I got used to it, ok, no hazard, it was fine. 牛樟

菇 (Niu Zhang Gu), Dr. ╳ knew this. He usually listened to patients. He did not reject. He did not reject.

Ms. Han portrayed her doctors’ open attitudes towards NWM:

I had asked Dr. X, I asked if there was any conflict (between Chinese medicine and Western medicine). He said no. He said if you felt any better, then you could take, (you) just needed to take two medicines at separate times…(When I was) in ╳╳ (hospital), they (the doctors) are also the same. They felt if you didn’t feel uncomfortable in the body then it is helpful for yourself. They suggested to me to try. They won’t reject, always encourage (us to try).

Further, Ms. Zhang’s husband also stated: 220

The Western medicine doctor said that Chinese medicine is not ineffective. But nobody does serious testing (of Chinese medicine). Otherwise, there are many Chinese medicine secret remedies. Nobody does the serious test…Dr. X also said he listened to what patients use and he would write down what patients said. If patients wanted to, he also introduced Chinese medicine to the patients.

Because the participants in this study were receiving treatment in hospital, many noted that they would listen to the doctors and cooperate with them because they had come to the hospital. For example, Mr. Wei stated:

I thought my disease, since I trust this consultant, when he treated me, I followed his instructions as much as possible. I would tell him if I ate something in day to day life. At least I understand if there is any impact or conflict. Doctor also had a better understanding of my life style. He had a better understanding when he treated me. (We) cooperate with each other.

Ms. Zheng also made the following comments about this issue:

Anyway I waited for doctors, whatever the doctor asked me to do, I do it. I only need to cooperate. I then get well. Don’t think too much… 221

This is similar to Ms. Zhang thoughts:

Now, my thoughts in my mind, since we came here; (we) listened to the doctor. These are my thoughts. Otherwise, it is uncomfortable to live here.

The above data suggests that professional relationships are not essential in determining perceptions of NWM and the role that such therapy plays in the treatment of cancer. People have complex interactions with Western health care professionals. When it comes to Western medicine treatment, cancer patients may adhere to the directions of a doctor. However, cancer patients make decisions about the use of NWM often regardless of a doctor’s opinion.

One study which investigated 453 outpatients in a comprehensive cancer centre regarding the use of complementary and alternative medicine (CAM) found that almost 74% of patients were willing to know more about CAM, and 90% of this group preferred to source from books or pamphlets and 50% from doctors (Richardson et al., 2000, p. 2509). Although some studies show that almost two thirds (74%) of people do not discuss NWM with their health care professionals (Lim 222

et al.’s, 2005, p. 19), around 50% of patients in a US study stated they would like to listen to their doctor’s opinions regarding NWM (Richardson et al., 2000, p. 2509). In this study, professional relationships and practices do not seem to play a vital role in cancer patients’ use of NWM. All participants in this study were treated in Western hospitals. It is notable that no matter whether they discussed NWM with their health care professionals or not, many decided to use NWM in some form.

While Western medicine treatment has become more institutionalised in Taiwan, NWM exists in Taiwanese people’s day to day life and is present in the community. People are able to share information about such therapies in informal ways, without considerable effort. These community connections may therefore contribute to the decisions of Taiwanese people with cancer to use NWM. Decisions about use of these two treatments (Western medicine and NWM) appear to occur at different levels. On the one hand, the decision to use Western medicine seems to be based on the authority bestowed upon western trained medical professionals. On the other hand, where decisions regarding NWM are made, this is more likely to occur within a family or community context. We see, therefore, two quite distinct decision making processes at work.

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Summary

Three levels of social relationships and how they related to each other have been discussed in this chapter. The analysis suggests why and how people with cancer use or not use NWM. These social relationships, which include family connections and community connections inform the decision making process of people with cancer in using NWM. In addition, how and why professional relationships and practices are important was also explored.

Next, the final chapter will address the core category and theoretical propositions of this study.

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CHAPTER 8 Taken-For-Grantedness “Because after all we are Chinese…”

Because of the long and entrenched history of Chinese medicine in Taiwan, people have traditionally incorporated such knowledge into their health care. As was argued earlier, with the appearance and growing acceptance of Western medical practices, multiple medical approaches have become more and more popular. Yet, despite the strong foundations of Western medicine in the treatment of cancer in Taiwan, the use of Chinese medicine has persisted and developed (Lin, 1992, p. 114).

Within this context, this study explored the processes of decision making that underlie the use of non Western medicine by people in Taiwan with cancer. The existence of a range of medical beliefs and systems of health care has long been characteristic of East and Southeast Asia (Kunstadter & Kleinman, 1975, p. 739) and particularly Hong Kong and China (Lee, 1975, pp. 231-235). An early review of a number of studies in Asia by Kunstadter and Kleinman (1975) highlighted the 225

existence of choices for those with disease between systems of medical beliefs and behaviours. None of these studies, however, extended to an exploration of the processes whereby people in East and Southeast Asia make decisions on health care therapies and regimes (p. 740). In the absence of subsequent studies on this issue within Chinese communities, this study provides insight into the processes by which people with cancer adopt various health practices and in particular, the use of NWM.

The core category that emerged from the study, a ‘‘taken-for-grantedness’’ in decision making about the use of NWM, reflects the meanings as constructed and articulated by the participants. These meanings, in turn, envelop the key categories of philosophical beliefs and social relationships which set the conditions for the actions of participants. The core and key categories and their constitutive knowledge thus provide the bases for understanding how the social meanings of using NWM are constructed and how people with cancer mediate the social processes of decision making regarding the use of NWM.

The study analysis applied the Strauss and Corbin (1998) premise of “moving between induction and deduction” to develop these understandings. That is, the study sought to induce what is going on within the data by reading the data and engaging

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with assumptions related to the data. The deductive phase constituted grounding the interpretation of the data in existing research and literature to validate the interpretation (pp. 136-137). Hence, from the point at which the core category (“taken-for-grantedness”) emerged from the analysis, a deductive process has been undertaken in theoretically linking the core category and its key categories and subcategories.

The study findings extend knowledge on and understandings of how and why Taiwanese people with cancer use NWM. As shown in figure 1, there are numerous connections between the two main categories, philosophical beliefs and social relationships and interactions which manifest in dynamic ways.

Furthermore, in seeking to explore how and why people with cancer in Taiwan use NWM, the study concludes with some theoretical propositions about the underlying social processes.

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Philosophical beliefs

Social relationships

Traditional Chinese Philosophy

Family Connections

Religious Practices

Community Connections

Chinese Proverbs

Professional Relationships and Practices

Taken-for-Grantedness

Figure 1: Taiwanese People with Cancer and Non-Western Medicine (NWM) Use 228

Taken-for-Grantedness

The core category “taken-for-grantedness” encapsulates the context (or the conditions for) and social meanings of NWM use in this study. This is well reflected in Ms. Chu’s statement: “Because after all we are Chinese, (we) still believe in Chinese medicine”. The context here is one where Traditional Chinese Medicine and Western medicine coexist in Taiwan. Thus the study has sought to interpret the ways in which people make sense of these coexisting systems and to pose a theorisation of the ways people with cancer, as active participants in their social worlds, negotiate the various systems of care. The findings of this study explored the context within which people use Western medicine and NWM and the forms and patterns of NWM use. The patterns of usage varied considerably and thus suggest that the interactions between people with cancer and their use of NWM are complex.

The dominant tendency in this study was for the concurrent use of Western medicine and NWM in the cancer treatment journeys. Furthermore and importantly, for many, NWM was not understood solely as a therapy “complementary” to Western medicine but rather as a therapy that has its own distinct value. This is so because, unlike Western medicine, NWM was used according to views grounded in long standing

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philosophical beliefs about health and healthcare. The coexistence of Western medicine and NWM by people with cancer thus takes on a particular meaning. Significantly, there is a taken-for-grantedness about the use of NWM which reflects a level of autonomy in decision making. This contrasts notably with the use of Western medicine which is most obviously linked to the expertise of the medical profession. The use of NWM therapies for cancer is, therefore, a result of actions grounded in the world of the participants far more so than the world of professionals.

Hence, the negotiations were mediated through deeply embedded and enduring belief systems. From this study we see that the sense of taking NWM for granted is reflected in philosophical beliefs, including traditional Chinese philosophy, religious practices and Chinese proverbs and self destiny, all of which appear as integral to everyday life in Taiwan.

Social relationships are also an important component of the interpretive process which surrounds the use of NWM by people with cancer. These social relationships include family connections and community connections. Significantly, professional relationships with Western practitioners do not appear to be as important as family and social relationships when it comes to decisions over the use of NWM among

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Taiwanese people with cancer.

Interactions within different social dimensions determined how and why NWM might or might not be used. People used NWM not simply because of its perceived effectiveness, but more so because of a taken-for-grantedness of philosophical beliefs, family connections and community connections. Human relationships and collectives are essential forms of human activity and society and the individual are understood as inseparable. Each social dimension considered in the study analysis was a different phase of a social process that contributed to the ways in which people responded to their diagnoses and health care.

Implications of the Findings

There are a number of potentially significant implications to be drawn from the study. First, the study results show that health care professionals may be unaware of cancer patient’s use of NWM. From a clinical point of view, it could thus be argued that it is appropriate for health care professionals to have knowledge of NWM use. This view is based on the notion that NWM may be harmful, and as such, health care professionals will need to inform patients of potential risks. Indeed, several recent 231

studies are emphatic about the need for both instruction on NWM and the integration of NWM into health care curricula and the health care system (Wyatt and Post-White, 2005, p. 216; Zhang, 2000, p. 139). Within this particular discourse it is a given that the basis for regulation is evidence based research for which the randomised controlled trial is considered the benchmark. Indeed, this is a standard that is largely accepted uncritically as appropriate for NWM (Cardini, et al., 2006, p. 282; Feng, et al., 2006, pp. 219-220).

However, while issues of patient safety and good clinical outcomes are important concerns, they did not appear to predominate in this study. Participants were concerned about doing their best in their situations and there was little concern that NWM would compromise wellbeing. Indeed, Traditional Chinese Medicine uses a very different structure and process from Western medicine and it may not be appropriate to apply the same standards for evaluating the two systems (Chi, 1996, p. 1345). From this perspective, communication with patients about risks of treatments will always be problematic since the methods used to define and determine such risks cannot be agreed. However, promoting open communication about treatment decisions is likely to be important to support and clarify these where requested.

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A further and related implication points to the dominance within the current literature of the concept of the integration of Western medicine and NWM or, in other words, the mainstreaming of NWM within western medical system (Algier et al., 2005; Scott et al., 2005; Wyatt and Post-White, 2005; Zhang, 2000). The findings of this study give support to a more critical input into discussions on integration. For example, the process of integration of NWM and Western medicine will see healthcare knowledge increasingly become the privileged domain of health care professionals and thus subject to the institutional constraints that characterise Western medicine. Yet, where the authority of medical practitioners is broadened to incorporate NWM so the autonomy of patient decision making in the use of NWM will be eroded. Furthermore, integration implies institutionalisation, regulation and perhaps the exclusion of some therapies. Finally, tensions may be created by efforts to integrate these two systems and may result in, not only political struggles for dominant positions within health care, but confusion and contradictions for individuals who already face significant stressors.

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Limitations of This Study

Symbolic interactionist research proposes that data and its findings are “here and now”; “here” is located, “now” is timed. Thus, analysis of this kind is seen as localised and concrete matter (Blumer, 1969, p. 131). In addition, a human’s social life and formation is mediated through an interpretive process and this process is contextualised.

But as we see from the above, the findings of this study may not be readily generalised. Rather, this study provides a contextualised view of why and how people with cancer act and how they interact with others in the particular social contexts of eastern countries and associated family and community perspectives.

There is also the methodological issue in this study of saturation. It was earlier argued that the study did not seek to achieve saturation. Rather, the concept of theoretical saturation was applied in the analytical process and not in respect of sampling. This may be considered a retreat from the traditional method and particularly that of Strauss and Corbin. However, as has been argued previously, the original intent of Glaser and Strauss (1967) was to define “saturation” as becoming possible only after 234

numerous research studies had been undertaken on the same phenomenon and within similar contexts (p. 62). Seemingly, Glaser and Strauss well understood the problematic of drawing a line in knowledge development, a point which has been obscured in subsequent grounded theory texts. Clearly, one study is not able to achieve saturation.

In addition, the participants of this study were all recruited from Western medicine hospitals. To some degree, therefore, these participants were accepting of Western medical treatments, even though they were using some forms of NWM. The participants of this study did not include those who chose not to be treated in the Western medicine system. It is noted that the processes for patients who reject western treatments altogether may result in different emphases in terms of influences on the construction of meaning. However, the strength of the study sample was that its characteristics allowed for an exploration of a complex process of incorporating quite distinct health care regimes.

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Recommendations for Future Research

There is a dearth of qualitative research that explores the use of NWM among people with cancer. From the findings of this study, we understand that people engage in decision making processes regarding Western medicine and NWM in a variety of ways. The Taiwan Public Health Report (2001) has indicated that the goal in the development of Chinese Medicine is to reform Chinese Medicine so that it becomes a more institutionalised process and thus encourages the integration of Chinese and Western medicines (p. 35). It would be worthwhile to explore people’s perceptions regarding institutionalised NWM settings, such as solely Chinese Medicine hospital or clinics.

In addition, this study has focused only on people with cancer who were hospitalised in Western hospitals and, therefore, an exploration of the broader population in the community is indicated. Further, this study concentrated on Taiwanese people with cancer. Most of the findings of the study appear to be specific to Eastern culture, such as traditional Chinese philosophy and religious practice (Buddhism, Taoism and folk beliefs are more Eastern oriented). Therefore, it is recommended that similar studies be undertaken in Western countries, such as Australia, to determine if there are 236

significant differences between the two cultures that shape decision making processes related to NWM use. It is also recommended that studies be undertaken exploring Taiwanese health care professionals’ perspectives and understandings of the use of NWM among people with cancer.

Conclusion

The social process that emerged from this study presents an explanation of the conditions within which the use of NWM was interpreted by Taiwanese people with cancer. The study explored how philosophical beliefs and social relationships and all that these entail presented as the contexts that conditioned, although did not determine, decision making. This study has thus provided an opportunity to explore the various patterns of co-existence of NWM and Western medicine as experienced by Taiwanese people with cancer and the social processes with which Taiwanese people engage when using NWM in their cancer treatment journey.

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Appendix I: Participant Information Sheet QUT Participant Information Sheet

Title of Project:

Exploring the use of non Western medicine by people with cancer in Taiwan: a grounded theory study

Researcher:

Wang, Shou-Yu (Cindy) Phone: 002-61-7-32631097 (Australia) (04) 26335636

(Taiwan)

I am an international student from Taiwan and enrolled in a Doctor of Philosophy (PhD) study offered by Queensland University of Technology, Brisbane, Australia. This project is being conducted as part of the course requirements for this degree. The purpose of this study is to explore the use of non Western medicine by people with cancer in Taiwan. The findings of this study may be published, however, no names or information which could identify any individual or organization will be recorded.

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If you agree to participate in this study, you will be asked to participate in an interview conducted by the researcher. During the interview, you will be asked to discuss your opinions about non Western medicine and views about using non Western medicine.

The interview will be audio taped and may last up to one hour. The interview will be conducted at a time and place convenient to you. You can stop the tape at any time if you do not want the specific content to be audio taped. These tapes will be transcribed without using any names or identifying features. Furthermore, the tapes will be erased after the study. Only the researcher and her research supervisor (Associate Professor Patsy Yates, Ms Carol Windsor and Associate Professor Chouh-Jiaun Lin) will have access to this information, so that your confidentiality can be assured.

The potential benefits of this study are an increased understanding about cancer patients’ uses of non Western medicine. This may assist in developing health care professionals’ understanding of how they can more effectively care for patients with cancer.

There are no known risks associated with beings involved in this study. If any

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problems or concerns arise during the study, the researcher can refer you to appropriate sources of help. If you experience any distress as a result of participation in this project, you can contact the Hospital Counselling service on (04) 26625111-2152 (Kuang Tain Hospital), (04) 2205 2121-4252 (China Medical College Hospital) for assistance, free of charge. In addition, you also can contact the researcher if you have any questions about the project, or the Secretary of the QUT Human Research Ethics Committee on 002-61-7-3864 2902 if you have concerns about the ethical conduct of the project.

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昆士蘭科技大學 研究說明

研究主題

研究者

臺 灣 地 區 癌 症 病人使用非西醫療法之探討：紮根理論研究

王守玉 電話 (04) 26335636

本人目前於澳洲布理斯本昆士蘭科技大學進修博士班課程， 此項研究計劃是本 人之博士論文主題， 此項研究計劃的目的在於探討臺 灣 地 區 癌 症 病人使用非 西醫療法的過程。此研究結果也許刊登於期刊或出版，但將不會出現任何名字或 機構名稱。

如果您同意參與此項研究，您將參與一次與研究者的會談。在會談當中，您將被 問及您對使用非西醫療法的看法和使用它們的觀感。會談將持續最長一小時，且 將進行錄音，會談會在您覺得方便的時間及地點舉行。當任何會談內容您不想被 錄音時，您可以隨時按下錄音停止鍵；在不提及名字的前提下，這些錄音帶的內 容將被謄寫下來作為資料分析之用。而在研究結束後這些錄音帶資料將被消除， 且在研究計畫過程中，只有研究者及其指導教授會接觸這些資料，因此您的個人

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資料絕對保密。這項研究將有助於增加了解癌 症 病人使用非西醫療法的過程， 同時有助於醫療專業人員了解如何更加有效率的照顧癌 症 病人。

參與本研究目前沒有已知的危險，如果在參與本研究期間有任何問題發生，研究 者將會轉介您到適當的單位尋求幫助。如果您因參與本研究而導致苦惱或情緒低 潮, 您可免費聯絡光田醫院社工室，電話: (04) 26625111-2152, 或中國醫藥大 學附設醫院社工室, 電話: (04) 2205 2121-4252, 尋求協助。此外，如果您對此 研究有任何問題，您可聯絡研究者。再者，如果您對此研究有任何倫理上的問題， 您可聯絡昆士蘭科技大學倫理委員會秘書室，電話: 002-61-7-3864 2902。

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Appendix II: Consent Form

QUT Consent Form

Title of Project:

Exploring the use of non Western medicine by people with cancer in Taiwan: a grounded theory study

Researcher:

Wang, Shou-Yu (Cindy) Phone: 002-61-7-32631097 (Australia) (04) 26335636

(Taiwan)

I agree to participate in Miss Wang, Shou-Yu’s (Cindy) research project entitled “Exploring the use of non Western medicine by people with cancer in Taiwan: a grounded theory study”.

By signing below, I am indicating that I: • have read and understood the information sheet about this project;

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• have had any questions answered to my satisfaction; • understand that if I have any additional questions I can contact the researcher; • understand that I am free to withdraw at any time, without penalty or comment; • understand that I can contact the researcher if I have any questions about the project, or the Secretary of the University Human Research Ethics Committee on 002-61-3864 2340 or [email protected] if I have concerns about the ethical conduct of the project; •

if I experience any distress as a result of my participation in this project, I can

contact the Hospital Counselling service on (04) 2662 5111-2152 (Kuang Tain Hospital), (04) 2205 2121-4252 (China Medical College Hospital) for assistance, free of charge; and • agree to participate in this project.

Name:

Signature:

Date:

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昆士蘭科技大學 同意書

研究主題

研究者

臺 灣 地 區 癌 症 病人使用非西醫療法之探討：紮根理論研究

王守玉 電話 (04) 2633 5636

本人同意參與王守玉小姐之研究計畫 (研究主題

臺 灣 地 區 癌 症 病人使用非西

醫療法之探討：紮根理論研究) 。

簽署此同意書時，本人已經 ∗ 閱讀並了解此研究之說明； ∗ 問及相關問題並獲得滿意答覆； ∗ 了解如果有其它問題, 本人可聯絡研究者， ∗ 了解可在任何時間無條件下退出此研究計畫， ∗ 了解如果對此研究有任何問題, 本人可聯絡研究者， ∗ 知道如果對此研究有任何倫理上的問題，本人可聯絡昆士蘭科技大學倫理委員 會秘書室，電話: 002-61-7-3864 2340 或 [email protected]；

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∗ 獲知如果因參與本研究而導致苦惱或情緒低潮，本人可免費聯絡光田醫院社工 室，電話: (04) 26625111-2152, 或中國醫藥大學附設醫院社工室, 電話: (04) 2205 2121-4252, 尋求協助； ∗ 同意參與此研究計畫。

姓名 _________________________

簽名 _________________________

日期 _________________________

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Appendix III: The Interview Theme List

The Interview Theme List

1. History of cancer patients use of non Western medicine. ∗ Could you describe your history of using non Western medicine? ∗ Could you talk about the role of non Western medicine in your daily life? ∗ Could you talk about the non Western medicine you use? 2. The relationships between non Western medicine and cancer treatments. ∗ Could you talk about the relationship between non Western medicine and other cancer treatment? 3. Associated events around the treatments of cancer ∗ Could you talk about what affect your decisions to use non Western medicine? 4. Is there anything else that you think is important to understanding your experiences of using non Western medicine during the treatment of cancer that we have not discussed?

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會談主題

1. 癌 症 病人使用非西醫療法的歷程。 ∗ 您能談您使用非西醫療法的歷史嗎？ ∗ 您能談一下非西醫療法在您日常生活中的角色嗎？ ∗ 您能談一下您所使用的非西醫療法嗎？ 2. 癌 症 治 療 與 非西醫療法之間的關係。 ∗ 您能說一下您決定使用非西醫療法的過程嗎？ ∗ 您能談一下非西醫療法與您所使用的其它癌 症 治 療 之 間 的 關 係 嗎？ ∗ 您能聊一下非西醫療法與您在克服及對付癌 症 之 間 的 關 係 嗎？ 3. 與癌 症 治 療 相 關 的 事 項 。 ∗ 您能說一下什麼會影響您使用非西醫療法的決定嗎？ 4. 有任何事件是您覺得在您癌 症 治 療 及 了 解 您使用非西醫療法時是重要的, 但我們並沒有談到的嗎？

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