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Healing through cancer

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Title:
Healing through cancer the use of complementary therapies by breast cancer survivors
Creator:
Long, Mari Elisa
Publication Date:
Language:
English
Physical Description:
272 leaves : ; 28 cm.

Subjects

Subjects / Keywords:
Breast -- Cancer -- Patients -- Rehabilitation ( lcsh )
Alternative medicine ( lcsh )
Alternative medicine ( fast )
Breast -- Cancer -- Patients -- Rehabilitation ( fast )
Genre:
bibliography ( marcgt )
theses ( marcgt )
non-fiction ( marcgt )

Notes

Thesis:
Thesis (Ph. D.)--University of Colorado at Denver, 2003.
Bibliography:
Includes bibliographical references (leaves 261-272).
General Note:
Department of Health and Behavioral Sciences
Statement of Responsibility:
by Mari Elisa Long.

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Source Institution:
University of Colorado Denver
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Auraria Library
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All applicable rights reserved by the source institution and holding location.
Resource Identifier:
55535796 ( OCLC )
ocm55535796

Full Text
HEALING THROUGH CANCER: THE USE OF COMPLEMENTARY
THERAPIES BY BREAST CANCER SURVIVORS
by
Mari Elisa Long
B. A., California State University at Sacramento
M.A., California State University at Sacramento
A thesis submitted to the
University of Colorado at Denver
in partial fulfillment
of the requirements for the degree of
Doctor of Philosophy
Health and Behavioral Sciences
2003


2003 by Mari Elisa Long
All rights reserved.


This thesis for the Doctor of Philosophy
degree by
Mari E. Long
has been approved
by
Lori A. Crane
tf- 2-V- 63
Date


Long, Mari Elisa (Ph.D., Health and Behavioral Sciences)
Healing Through Cancer: The Use of Complementary Therapies by Breast Cancer
Survivors
Thesis directed by Associate Professor Kitty Corbett
ABSTRACT
This study explored the use of complementary therapies by breast cancer
survivors. Semi-structured, in-depth interviews were carried out with 18 women
diagnosed with breast cancer and living in the geographic area that encompasses
Denver, Colorado Springs, and Pueblo, Colorado. Transcriptions were analyzed
using a modified grounded theory approach characterized by constant
comparative analysis of data, a flexible coding scheme, and the generation of
theory based on concepts grounded in the data Use of complementary therapies
by breast cancer survivors were found to be part of a larger process of healing
through cancer by restoring ones sense of coherence, through a coping process
that includes information seeking, reframing and/or finding meaning in the cancer
experience, controlling the effects of cancer and conventional treatment, helping
the body fight/prevent cancer, and restoring balance and energy. The healing
process takes place within personal and environmental contexts that influence
choices and decisions, the results of which can alter aspects of the context within
IV


which further healing occurs. As breast cancer survivors engage in the healing
process, they develop 1) a new, enhanced, or reinforced understanding of their
illness, beliefs, values, feelings, and goals; 2) a sense of being able to manage
their illness and life experiences; and 3) a sense of meaning in these experiences.
This process can reinforce or result in a holistic personal philosophy of health,
illness, and healing that incorporates a strong spiritual perspective and a clearer
sense of self in the world. This study indicates that healing from a life-
threatening illness is a proactive process that involves all dimensions of the
individual (i.e., body, mind, and spirit), and begins as soon as the individual is
diagnosed. Health care providers who work with breast cancer patients will
benefit by recognizing that they are dealing with individuals in transition who are
active agents of their own healing, a process in which complementary therapies
may be an integral part.
This abstract accurately represents the content of the candidates thesis. I
recommend its publication.
Signed
K. Corbett


DEDICATION
To my father for his love and presence in my life, my children as they strive to
make their dreams a reality, the magnificent women who participated in this study
for their generosity, courage, and dedication to their fellow cancer survivors, and
all of the heroic individuals who are traveling the healing road.


ACKNOWLEDGEMENT
It has been a privilege to have the support of the exceptional individuals who
agreed to be on my dissertation committee. I want to express my heartfelt
gratitude to my advisor, Kitty Corbett, for her guidance, encouragement, and
reassurance throughout this research project. Her support has been invaluable.
I also want to thank Craig Janes, Lori Crane, and Linda Krebs for their insightful
comments and advice, as well as their time and interest in this research. I must
also express gratitude to my husband, Greg, for being my anchor, and for being
willing to grow with me throughout this process.


CONTENTS
Figures....................................................xiv
Tables.....................................................xv
CHAPTER
1. INTRODUCTION....... 1
Purpose of the Study..................................3
Background............................................5
Summary...............................................9
2. DEFINITION OF TERMS.....................................11
Definitions Related to Illness and Cancer Survival...11
Disease and Illness............................11
Cancer Survivor................................11
The Cancer Experience..........................12
Definitions of Conventional Medicine and Complementary
and Alternative Medicine (CAM)...................... 12
Conventional Medicine..........................13
Alternative Medicine...........................13
Complementary Medicine.........................14
vm


3. REVIEW OF THE LITERATURE
23
Cancer Survival.... ......................................23
Cancer, Stress, and Coping................................24
The Transactional Model of Stress and Coping.......28
The Salutogenic Model of Health.................... 33
Conceptualization of the Illness Experience...............47
The Sociocultural Context of Illness and Healing.........49
Globalization of Medicine............................... .57
Medical Pluralism...... ..................................61
Summary...... 74
4. METHODS......................................................78
The Grounded Theory Method................................78
A Modified Grounded Theory Approach.......................85
The Study Sample..........................................87
Data Collection...........................................89
Data Coding and Analysis..................................95
Open Coding Results.................................99
Selective Coding Results........................ 109
Establishing Scientific Rigor............................115
Summary................................................ 118
5. PARTICIPANT PROFILES....................................... 120
IX


The Participants...............................................120
Participant 1: Linda....................................120
Participant 2: Katie....................................122
Participant 3: Louise...................................123
Participant 4: Rita.....................................125
Participant 5: Diane....................................126
Participant 6: Tina.....................................127
Participant 7: Lisa.....................................128
Participant 8: Lynn.....................................130
Participant 9: Ten......................................131
Participant 10: Becky...................................133
Participant 11: Jenny...................................134
Participant 12: Christine...............................136
Participant 13: Ann.....................................137
Participant 14: Cathy...................................138
Participant 15: Marie...................................140
Participant 16: Joanne..................................141
Participant 17: Fiona...................................142
Participant 18: Toni....................................145
6. ENGAGING IN THE HEALING PROCESS....................................147
Types of CAM Used by Study Participants and Reasons


for CAM Use............. ..................................147
The Coping Strategy.......................................153
Information Seeking................................153
Refraining and Finding Meaning.....................156
Helping Body Fight or Prevent Cancer...............158
Controlling the Effects of Cancer and Conventional
Treatment..........................................158
Restoring Balance and Energy.......................161
Personal and Environmental Resources......................165
Sources of Information about CAM..........................167
Health, Illness, and Healing Defined......................168
Participant Definitions of Health..................169
Participant Definitions of Illness.................170
Participant Definitions of Healing.................172
Summary...................................................174
7. SYSTEMIC MODEL OF HEALING THROUGH BREAST
CANCER.........................................................176
Useful Concepts from Cognitive-Motivational-Relational
Theory........................................... ....176
Useful Concepts from the Sahitogenic Model................180
Insights from the Research on Spirituality and Healing....183
Life-Threatening Illness and Healing......................186
xi


Pulling the Concepts Together. .................. .... 190
Summary............. .............................196
8. RUMINATIONS, IMPLICATIONS, AND LIMITATIONS...........197
Discussion........................................197
CAM Use, Biomedicine, and Order of Resort...198
CAM Use, Sense of Coherence, and Healing....202
Networks Large and Small....................206
The Language of Health, Illness, and Healing.. ..210
CAM Use and Spirituality.....................217
A Model of Healing...........................221
Major Findings...............................224
Implications for Health Care......................230
Limitations.......................................240
Future Research...................................243
Summary...........................................245
APPENDIX
A DEFINITIONS OF CAM MODALITIES USED
BY THE STUDY PARTICIPANTS....................248
B. PRELIMINARY QUESTIONNAIRE.....................252
C. INTERVIEW GUIDE...............................254
D. CONSENT FORM..................................255
xii


E. ATLAS.TT NETWORK DIAGRAMS............257
REFERENCES.....................................261
Xlll


LIST OF FIGURES
Figure
4.1 Coding Process...............................................101
4.2 Coping Strategy..............................................113
4.3 Personal and Environmental Contexts..........................114
7.1 Systemic Model of Healing Through Breast Cancer..............192
xiv


LIST OF TABLES
Table
4.1 Data on Individual Study Participants........................... 91
4.2 Characteristics of Study Participants: Summary. ..................92
4.3 Preliminary Code List......................................... 103
4.4 Codes from the Second Phase of Open Coding..................... 108
4.5 Coding Levels 1 and 2......................................... Ill
4.6 Coding Levels 3 and 4.......................................... 112
6.1 CAM Used and Reasons for Use...... 149
xv


CHAPTER 1
INTRODUCTION
The use of complementary and alternative medicine, or CAM, has been
increasing dramatically in popularity and use over the last 15 to 20 years in the
United States and abroad, especially among cancer patients (Astin, 1998;
Tagliaferri, Cohen & Tripathy, 2001). One study found that between 1987 and
1992 the use of complementary therapies by cancer patients increased by 63.9%
(Abu-Realh et al., 1996). It is emerging as a significant health care issue, so
much so, that in 1998 the Congress established the National Center for
Complementary and Alternative Medicine (NCCAM) as an additional arm of the
National Institutes of Health, in order to stimulate, develop, and support research
on CAM across several diseases and conditions for the benefit of the public
(OCCAM Web site, 2002). That same year, the Office of Cancer Complementary
& Alternative Medicine (OCCAM) was established to coordinate and enhance the
activities of the National Cancer Institute in the field of CAM. The concern over
use of CAM has increased as a result of a growing body of research indicating
that it is becoming increasingly widespread, along with the knowledge that many
patients do not talk to their physicians about such use (Cauffield, 2000).
1


An emphasis has been placed on the importance of research to establish or
refute the effectiveness of CAM. Many studies have been motivated by concern
for the possible harmful effects that such practices may have on the health of
those who use them, particularly individuals suffering from life threatening
diseases, such as cancerdiseases that require timely and controlled medical
intervention. There is also a concern that the use of certain types of CAM may
interfere with the effectiveness of conventional treatments, or indirectly keep
patients from starting effective conventional treatments (Cassileth, 1999).
The choice to focus on breast cancer survivors was driven by two main
factors. One reason is that breast cancer is the most frequently diagnosed non-
skin cancer in women in the United States, with over a quarter of a million new
cases predicted for 2003 (American Cancer Society, 2003). More than 211,000 of
those cases will be women with invasive breast cancer, and approximately 56,000
will be cases of in situ breast cancer. While nearly 40,000 women will die of
breast cancer, likely all 211,000 will experience the physical, mental and
emotional suffering that comes with the diagnosis and treatment of this disease.
Secondly, the literature indicates that breast cancer survivors tend to be frequent
users of CAM.
2


Purpose of the Study
The purpose of this study was to explore and evaluate the use of
complementary therapies by breast cancer survivors in their efforts to deal with
the cancer experience. The specific aims of the study were to:
1. better understand the context within which cancer survivors
decide to use complementary therapies;
2. explore breast cancer survivors reasons for using such
therapies and their experiences using them;
3. shed light on the issue of directionality regarding certain
characteristics previously attributed to individuals who use
complementary therapies (e.g. what comes first, the holistic mindset or the
use of complementary therapies?); and
4. generate an interpretive explanation of, and develop theory
regarding, the use of complementary therapies by breast cancer survivors.
Much of the current data on the use of CAM is derived from survey
research. While such methods allow for larger numbers of subjects and a greater
opportunity to generalize findings, they are less effective for understanding
context and the meaning of experiences. Qualitative research methods are useful
for exploring and interpreting the meanings people attach to the experiences of
3


health and illness (Rice & Ezzy, 1999). Health care decision making is an
inherently complex process, involving a number of personal, social, and
situational factors that are difficult, if not impossible, to identify and analyze
using quantitative methods. Personal values, beliefs, goals, desires, and
expectations can influence health care choices, as can the availability of particular
health care resources, and ones knowledge regarding those resources.
Additionally, these factors can change over time, and according to ones
experiences. Collecting narratives of health care decision making is the only way
to capture the unique combination and interaction of the factors involved. While
quantitative methods are more appropriate for testing theory, qualitative methods
lend themselves to discovery and theory building, by allowing for concepts and
analytical categories to derive from the data, rather than forcing the data to fit into
predetermined categories of response.
This study utilized qualitative methods of data collection and analysis.
These methods are best suited to exploring context, process, and subjective
meanings and experiences. In order to understand how and why people make
health care choices, such as the use of CAM, it is necessary to talk directly with
them. Data were collected using semi structured interviews, and analyzed using
an approach appropriate for theory developmentan approach informed by
grounded theory methodology. This approach and its theoretical underpinnings
are presented in more depth below. Although a retrospective qualitative approach
4


produces narrative indelibly colored by the experiences and attitudes of the
present, it does get closer to establishing a history of what occurred.
Results from this study can enhance our understanding of the needs and
expectations of breast cancer patients/survivors and can assist those who want to
develop comprehensive and sensitive cancer support programs. The study can
provide valuable information to physicians, and other health care workers, who
desire to establish and maintain open, productive lines of communication and
understanding with the cancer patients they serve. Finally, results from this
research can help address some of the gaps in the existing literature on both
physical and psychosocial aspects of the cancer experience as they relate to the
use of complementary therapies by breast cancer patients/survivors. In order to
more fully understand and help those living through the cancer experience, it is
important to bridge this gap between what is objectively known and what is
subjectively perceived.
Background
The prevalence of CAM use in the United States is high and has increased
substantially over the past 20 years. National survey research (Eisenberg, et al.,
1998) has found that the prevalence of CAM use increased by 25% between 1990
and 1997. In 1997 an estimated 4 in 10 Americans used at least one type of
alternative medicine, and for adults aged 35 to 49 the estimate was 50%
5


(Eisenberg et al., 1998). Use was distributed widely across all sociodemographic
groups. In addition, the results showed that roughly 1 in 5 individuals (15 million
adults) taking prescription medications were also taking herbs, high-dose
vitamins, or both. This is so, in spite of a lack of adequate empirical evidence to
set any firm conclusions as to the usefulness or safety of these therapies. These
same results showed that in 1997, visits to alternative practitioners exceeded total
visits to all primary care physicians, and total out-of-pocket expenditures related
to CAM therapies amounted to at least $27.0 billion (Eisenberg, 2003).
Clearly, the use of CAM is a substantial part of the American health care
picture. The results of a recent study exploring patient decision making regarding
the use of alternative medicine showed that the most prominent barriers to using
alternative medicine were cost, access, and time (Boon, et al., 1999). This might
be an indication that many more patients would actually be using CAM if they
could.
Studies of the reasons people use CAM often seem to produce as many
questions as they answer. For example, one national study (Astin, 1998) found,
contrary to one of the researchers original hypotheses, that there was no
correlation between use of CAM and dissatisfaction with conventional medicine.
In other words, people who used CAM as an adjunct (complementary approach)
to biomedicine did not express dissatisfaction with conventional medicine. Only
6


those few who used CAM as a true alternative to conventional treatment showed
dissatisfaction with conventional medicine.
The vast majority of individuals who use CAM do so in a complementary
sense (Astin, 1998, Robinson, et al., 2002). In the Astin study, the following
variables predicted use of CAM: 1) more education; 2) being part of a value
subculture termed the cultural creatives(Ray, 1997); 3) having had a
transformational experience that changed ones worldview; 4) having poorer
overall health; 5) having a holistic health philosophy, whereby the consideration
of body, mind, and spirit is important to the treatment of health problems; and 6)
reporting particular health problems, (e:g., back problems, urinary tract problems,
and chronic pain). A major conclusion of the study was that the majority of CAM
users appear to be doing so because they find the CAM modalities they use to be
more Congruent with their beliefs, values, and philosophical orientations toward
life and health than conventional medicine, rather than due to dissatisfaction with
conventional medicine.
The Astin study (1998) included people who suffered from a wide variety
of illnesses. It did not specifically include or identify cancer patients. There is
some reason to believe that cancer patients, given the life-threatening and likely
anxiety producing nature of their disease, might have different motivations for,
and experiences with, CAM. In particular, the questions presented to participants
in the Astin study were not framed in a way that would have permitted
7


understanding the causal relationship between certain precursors, for example,
philosophy of health, and decisions to Use CAM. A study subject may indicate
that she has a holistic philosophy toward health, but in a retrospective study we do
not know if that philosophy was a precursor to the use of CAM, or a result of that
use, unless questions are asked in such a way that the ensuing responses make that
distinction. Even if it is a precursor to CAM use, we do not know if it is a long-
standing perspective of the individual, or a result of having been diagnosed with
cancer. A similar causal question comes up in terms of the correlation between
the use of CAM and having had a transformational experience that changed ones
worldview. Diagnosis of a life threatening illness may be that kind of
transformational experience.
A major finding of the CAM literature that relates to these dynamics is
that the majority of patients who use CAM are not dissatisfied with conventional
medicine. This lack of dissatisfaction may not necessarily indicate that people
feel that conventional medicine meets all of their needs, but that they only expect
so much out of it (Astin, 1998). When asked if they are dissatisfied with
conventional medicine, some people may answer no, suggesting that they are
satisfied with the conventional treatment they received; however, they may still
have physical, psychosocial, spiritual or emotional needs (including anxiety and
distress) that they just accept will have to be met in other ways. The fact may be
that they are satisfied with conventional treatment, even though it leaves a great
8


deal to be desired in terms of meeting all of their needs. A recent study supports
this (Paltiel et al., 2001). The results indicated that the use of CAM was
associated with needs unmet by conventional medicine, incomplete trust in the
physician, and changed outlook or beliefs since die diagnosis of cancer. This is in
line with literature on strategies of resort, indicating that the use of CAM may be
part of a sequential process of searching for satisfaction by those patients whose
conditions are least responsive to whatever care they sought first (Katz, 2000).
A large and diverse group of alternative and complementary therapies is
used by cancer patients in both developed and underdeveloped countries
(Cassileth et al., 2001). This indicates that there is more going on than a number
of naive, hopeful and overly optimistic cancer patients being enticed into using
unproven remedies. The widespread use of CAM may actually represent positive
and rational behavior, rather than resistance to biomedicine or ignorance. It may
represent a kind of active coping behavior in which patients proactively identify,
and use, available resources they believe to be health enhancing (Sollner et al.,
2000).
Summary
The purpose of this study was to explore and evaluate the use of
complementary therapies by breast cancer survivors in their efforts to deal with
the cancer experience, using qualitative methods to discover the subjective
9


meanings and experiences of the study participants. The specific aims of the
study were to gain a better understanding of the context within which cancer
patients decide to use complementary therapies, to assess directionality regarding
certain characteristics previously attributed to those cancer patients who use
complementary therapies, and to generate an interpretive explanation of) and
develop theory regarding, the use of complementary therapies by breast cancer
survivors.
The upcoming chapters provide background information about previous
research that informs this study;, the research design and process, and the findings
and implications of the research study. Chapter 2 provides a review of literature
pertinent to the topic of CAM use by cancer patients. Chapter 3 describes
sampling and data collection methods used in the study, and includes participant
information from preliminary questionnaires they filled out before their
interviews. Chapter 4 describes the methods of data organization and analysis
that were used, including the specific outcomes of the coding and analysis
process. Chapter 5 begins with brief profiles of each of the eighteen study
participants. It then presents the theoretical findings that ultimately led to the
development of an explanatory model of healing through breast cancer, which is
described in depth in Chapter 6. Finally, Chapter 7 includes an overview of study
findings, including the hypotheses that were generated, implications for the health
care field, limitations of the study, and suggestions for future research.
10


CHAPTER 2
DEFINITION OF TERMS
The definitions of terms in this chapter are provided to enhance
clarification of meaning for the reader. They derive from the literature on CAM
and other areas of research and theory relevant to the present study.
Definitions Related to Illness and Cancer Survival
Disease and Illness
Kleinman (1980, p. 72) defines disease as the malfunctioning of biological
and/or psychological processes. Illness, on the other hand, refers to the
psychosocial experience and meaning of perceived disease. It is created by
personal, social, and cultural reactions to disease, and includes ...communication
and interpersonal interaction, particularly within the context of the family and
social networks.
Cancer Survivor
The definition of cancer survivor used in this study is drawn from one
used by the National Cancer Institute. According to this definition a person is
considered to be a cancer survivor from the time of the cancer diagnosis
11


throughout the rest ,of his or her life. The term is more inclusive than cancer
patient, which refers to the time that the person actually spends undergoing
treatment, or under direct medical supervision. The time spent as a patient is just
one part of the overall experience of the cancer survivor (NCI, 1995).
The Cancer Experience
The term cancer experience is used frequently in this thesis. It refers to
an individuals total experience with cancer. It is both temporal and dimensional.
It includes diagnosis, conventional and unconventional treatment experiences, and
coping experiences, as well as physical, mental, emotional, and spiritual
dimensions of the overall experience. The term represents what the individual has
been through since, and as a result ofj having been diagnosed with cancer. The
cancer experience is dynamic and evolving. What it includes one day may have
changed to some degree by the next.
Definitions of Conventional Medicine and Complementary
and Alternative Medicine CAM
The use of alternative forms of medicine is not unusual. Many of the
approaches which have been referred to as alternative, complementary, non-
conventional, unconventional, questionable, unorthodox, or simply
CAM are mainstream therapies in other parts of the world. Neither are such
12


approaches new to Western systems of medicine. In fact, prior to the
consolidation of medical authority in the United States, which took place between
1850 and 1930, allopathic medicinethe precursor of biomedicinewas one of
numerous medical approaches practiced in the United States, including
naturopathy and homeopathy (Stanr, 1982).
Complementary and alternative medicine is a group of diverse medical
and health care systems, practices, and products that are not presently considered
to be part of conventional medicine in the United States. The list of what is
considered to be CAM changes continually, as those therapies that are proven to
be safe and effective become adopted into conventional health care, and as new
approaches to health care emerge (NCCAM Web site, 2002):
Conventional Medicine
Conventional medicine, or mainstream medicine, includes health practices
that are widely accepted and practiced by United States-based health
professionals, such as medical doctors (M.D.s), physical therapists, psychologists,
psychiatrists, and registered nurses (NCCAM Web site, 2002).
Alternative Medicine
Alternative medicine is used in place of conventional medicine (NCCAM
Web site, 2002). Alternative medicine is a term that refers to methods, therapies,
13


or approaches that are inconsistent with the biomedical model (a predominantly
anatomic, biochemical model) and includes practices and elements such as
acupuncture, homeopathy, dietary supplements, herbs, aromatherapy, and
massage (Colorado HealthSite, 2002). In terms of cancer care, these include
treatments other than surgery, radiation, and chemotherapy that are commonly
used for the treatment of cancers (Cassileth, 1996).
Complementary Medicine
Complementary medicine refers to alternative medicine used in
conjunction with, or as a complement to, conventional treatment (Colorado
HealthSite, 2002). The National Center for Complementary and Alternative
Medicine classifies CAM into the following five categories (NCCAM Web site,
2002):
1. Alternative Medical Systems Alternative medical systems are built
upon complete systems of theory and practice. These systems have
usually evolved apart from, and prior to, the conventional medical
approach used in the United States. Examples are homeopathic
medicine, naturopathic medicine, Chinese medicine, and Ayurveda
(NCCAM Web site, 2002).
2. Mind-Bndv Interventions. Mind-body medicine uses a variety of
techniques aimed at enhancing the minds capacity to affect body
14


functions and symptoms. Examples include meditation, prayer, and
mental healing, as well as art, music, and dance therapies.
3. Biologically Based Therapies. CAM therapies that use substances
found in nature, such as herbs, foods, and vitamins.
4. Manipulative and Bodv-Based Methods. Manipulative and body-
based therapies are based on manipulation and/or movement of one or
more parts of the body. Examples include chiropractic, osteopathic,
and massage therapies.
5. Energy Therapies. Energy therapies involve the use of energy fields,
and are subdivided into 1) biofield therapies, which aim to affect
energy fields that surround and penetrate the human body (e.g., Reiki,
qigong, and therapeutic touch); and 2) bioelectromagnetic-based
therapies, which involve the unconventional use of electromagnetic
fields (e.g., pulsed fields, magnetic fields, and alternating or direct
current fields).
The literature on CAM can be very confusing, due to the plethora of terms
that have been created to refer to the many unconventional forms of medicine
available. Kaptchuk and Eisenberg (2001b) have recently developed a taxonomy
that organizes the domains of unconventional medicine to include a wide array of
therapeutic practices. They point out that a taxonomy balances distinction with
commonality to create a useful system, but that no one taxonomy will suit all
15


forms of analysis or comparison. While there are some overlaps in their
taxonomy, it is useful in terms of this study.
According to Kaptchuk and Eisenberg, unconventional medicine is
divided into two categories. The first one, which is also the broader category, is
referred to as complementary and alternative medicine (CAM), and encompasses
a wide range of practices that are utilized by the general public. The second
category, called parochial unconventional medicine, is narrower and consists of
the healing practices of specific ethnic and religious groups, such as Puerto-Rican
spiritualism, Appalachian folk beliefs, and Pentecostal Christian faith healing.
The broad category CAM has been further divided into the following five
sectors (Kaptchuk & Eisenberg, 2001b, pp. 197-200):
1. Professionalized or Distinct Medical Systems. This category includes
those healing practices that are organized into medical movements
with distinct theories, practices, and institutions, with a body of
literature that helps guide therapy and practice, as well as sharpen
distinctions between different forms of practice! Examples are
chiropractic, acupuncture, homeopathy, naturopathy, massage, and
dual-trained MDs.
2. Popular Health Reform. This category includes alternative dietary and
lifestyle practices often, but not always, advocated by untrained
16


laypersons. Examples are vegetarianism, macrobiotics, eating only
organic food, botanicals, nutritional supplements, and mega-vitamins.
3. New Age Healing. This category includes overlapping religious and
healing movements. The New Age movement promotes unrestricted
self-expression and emphasizes a fluid spirituality. Adherents include
individuals from a wide range of spiritual belief systems. New Age
beliefs resist any separation between spirituality and physical health or
faith and medicine. Examples are esoteric energies, crystals, magnets,
spirits, mediums, Reiki, and qigong.
4. Mind-Body Healing. This category includes modalities that rest on the
belief that mental forces are the preeminent forces health. Therapies
include the use of visualizations, affirmations, intentions, meditations,
emotional release techniques, biofeedback, hypnosis, guided imagery,
and relaxation techniques.
5. Non-Normative Scientific Enterprises. These therapies can include
sophisticated pharmacologic agents, and often revolve around a well-
known proponent who can have legitimate scientific or medical
credentials, but advocates theories and practices that are not
recognized as valid by the general scientific community. Examples
are chelation, iridology, antineoplastons, hair analysis, and Hulda
17


Clarks regimen for .cancer. This type of CAM typically appeals to
individuals with potentially catastrophic illnesses, such as cancer.
CAM thus encompasses a continually evolving body of medical
approaches and practices, and the line between them and conventional practices
has moved throughout the history of the U.S. medical system, and continues to do
so. What fuels this dynamic process? Partially, it is the need to survive and
flourish. This process becomes easier to see during crises. Crises allow us to see
the power of human need to create and recreate systems of meaning and action. A
breast cancer diagnosis can be a crisis event. It can disturb the equilibrium of
everyday life experience and necessitate a period of conscious personal change on
any of the following levels: psychological, emotional, physical, spiritual, and
philosophical. This study provides a useful illustration of how, under such
circumstances, CAM use is a complex and multilayered phenomenon. This
thesis, in one sense, reflects the experiences of 18 women who have gone through
such a crisis event. In another sense, it is example of health care utilization at the
local level, a phenomenon that is both personal and a sociocultural.
Kaptchuk and Eisenberg (2002b) point out that, although it is not settled
whether self-help groups should be regarded as CAM, to the extent that they are
not conventional they can automatically be described as alternative. In this study
breast cancer support groups are regarded as complementary therapies to the
extent that they are not part of conventional breast cancer treatment protocols, and
18


are frequently accessed through friends or acquaintances, rather than through the
conventional medical system. Support groups are also attended as a result of
personal choice, in order to receive a level and type of support that the cancer
survivor does not receive through conventional medical care.
Yoga and acupuncture are good examples of overlap in some of the
categories of this taxonomy. Both yoga and acupuncture derive from non-
Westem medical systems, so they fall into the taxonomic category of
ethnomedicine (part of what Kaptchuk & Eisenberg refers to as parochial
unconventional medicine), but can also be considered as energy therapies, or
practices within professional medicine systems.
Sharma (1992, pp. 47-53) has devised a general typology of those who use
unconventional medicine in Britain that is pertinent to the present study. The first
type refers to the Earnest Seeker, one who is desperately searching for
treatment for a specific illness when he or she feels that biomedicine has nothing
left to offer. The second type of user is the Stable User, one who has an
ongoing relationship with a practitioner of some form of alternative medicine for
everyday conditions. Finally, there is the Eclectic User, who explores both
biomedical and non-biomedical forms of medicine.
The acronym, CAM, although widely used in the scientific literature, can
be misleading. It seems to lump alternative and complementary therapies
together, suggesting that they do not differ significantly. On the other hand, it is
19


also misleading to consider them as referring to completely different types of
treatment modalities. In an effort to more thoroughly clarify the distinction
between the two, it should be explained that complementary and alternative
therapies are largely (though not always) the same types of treatment or practices,
but used in mutually exclusive ways.
All use of CAM involves alternative therapeutic methods, though use of
alternative methods need not be complementary to conventional treatment.
Because use patterns are sufficiently complex to render such a distinction
meaningless, a more useful definition of complementary and alternative medicine
should consider the personal and social contexts of use. For instance, for some
individuals, the ingestion of particular herbal mixtures may be just a daily practice
for the purpose of general health benefits such as internal cleansing; however,
when they are ingested for the purpose of detoxification by a person who is
undergoing conventional treatment for cancer, perhaps as suggested by a fellow
cancer survivor in a support group, this practice then becomes a complementary
therapy, at least for that individual at that particular time. If such a practice is
used by a cancer patient as a replacement for conventional treatment, then it
becomes an alternative method of treatment. A rejection of conventional
treatment is a far more radical step for culturally mainstream Americans, and
likely has complex social and psychological antecedents. As one would expect,
20


studies have shown that the vast majority of individuals who use alternative
therapies, use them as complementary therapies (Astin, 1998).
There is another, though less common, way in which the terms have been
used. According to this way of defining complementary and alternative medicine,
when non-mainstream (i.e., non-conventional) methods of treatment are used in a
manner independent of (i.e., not in an integrated fashion), or instead of
conventional treatment, they are regarded as alternative therapies.
Complementary therapies, on the other hand, are non-conventional treatments that
are applied as adjuncts to conventional treatment in an integrated fashion
(Cassileth, 1999). This puts particular emphasis on the importance of the
integration of the non-conventional treatments with the conventional treatments in
order for the non-conventional treatments to be considered as complementary to
the conventional treatments.
Most of the studies cited in the previous sections, and throughout the
remainder of this thesis, have used the term alternative, complementary, and
CAM interchangeably, recognizing that the use of alternative therapies as a
replacement for conventional treatment is not at all common. In order to maintain
consistency between this paper and the current literature, and to avoid confusion
within this paper regarding the citation of sources from the literature that had used
the term CAM, this study also uses the term CAM throughout. However, any
reference to CAM related to the data from the present study refers to the use of
21


CAM in a complementary sense only, as each of the study participants had also
received conventional breast cancer treatment. A preferred term, in the authors
opinion, would be complementary therapies. The replacement of the word
medicine with the word therapies would reflect the fact that the individuals
who use such methods may not always think of them as forms of medicine; rather,
they may regard them as therapeutic methods of self-care that are used in addition
to conventional treatment.
For a list of the types of CAM and their definitions used by the breast
cancer survivors who volunteered to participate in this study, see APPENDIX A.
These definitions do not represent all types of CAM used by the general
population, or all types of CAM found to be used by breast cancer
patients/survivors in other studies. The definitions also do not provide detailed
explanations of the therapies, some of which may be quite complex if explained in
their entirety. The definitions are basic explanations provided to enhance
understanding and continuity for the reader regarding C AM used by the
participants of this study.
22


CHAPTER 3
REVIEW OF THE LITERATURE
In addition to the literature on CAM use described in the background
section above, this research was informed by the literature on cancer survival,
stress and coping, chronic illness, and the sociocultural context of illness,
including pluralistic medical systems, the globalization of medicine, and
spirituality and healing. The literature on CAM use by cancer patients tends to
link the dynamics of stress and coping, the meeting of physical, social and
psychological needs, and the social and cultural contexts of illness and medical
care.
Cancer Survival
Cancer survival is a growing area of interest and research. The term
cancer survivor has for some time been defined in terms of length of survival.
Five years post-diagnosis is often used as the point at which an individual
becomes a cancer survivor. Increasingly common, however, is the practice of
considering a person to be a cancer survivor from the moment of diagnosis. This
perspective regards cancer survival as an ongoing process of healing and
adjustment (Gambosi & Ulreich, 1990), recognizing that there are physical,
23


emotional, and psychosocial needs that must be addressed at various points in the
process.
Cancer survival has been described by Mullan (1985) as having three
phases, or seasons: disease diagnosis and treatment, extended survival with fear of
recurrence, and long-term or permanent survival with a subsided fear of
recurrence. Hassey-Dow (1990) built on this theory of cancer survival by
developing suggestions for assisting cancer survivors at each phase of the process.
The suggestions included providing support, encouraging communication of
feelings and emotions, educating and coaching the individual, and assisting the
individual in setting goals.
Cancer. Stress and Copine
It is well established that the cancer experience is stressful. In fact, a
diagnosis of cancer places extraordinary demands on the coping ability of the
individual, due to the potential severity of the disease, and the fear and stigma that
accompany it (Fredette, 1995; Weisman, 1979). There is a relationship between
how people experience an illness and the social and cultural meanings inherent in
metaphors used to describe that illness. That the metaphorization of the body and
bodily experiences is commonplace is understandable. As Scheper-Hughes and
Lock (1987) points out, the body is, at once, both a physical and symbolic artifact;
therefore, The body in health offers a model of organic wholeness; the body in
24


sickness offers a model of social disharmony, conflict, and disintegration.
Reciprocally, society in sickness and in health offers a model for
understanding the body (p. 8).
Sontag (1978) critically examines and questions the use of metaphors to
describe cancer and the use of cancer to describe other human phenomena.
Although it acknowledges that the use of disease as metaphor is a common
cultural practice, it points out the danger of taking metaphors too seriously.
Sontag (1978) argues that the metaphors and myths regarding cancer add greatly
to patients suffering. Through the use of conceptual images of cancer, such as it
eating away at or consuming a person, or creeping up on a person, metaphors
have the effect of transforming cancer into a frightening, inescapable scourge.
Sontag (1978) points out that diseases for which there are no known cures
get attributed to the persons behavior, lifestyle, personality, or emotional nature,
a practice that puts the blame on the victim. Although this practice has, at times,
been used with the intention of empowering the individual by making him think
that he can control such diseases by controlling his own behavior and emotions,
the tactic can, according to Sontag, have the effect of blaming the patient for his
affliction, and instilling shame and guilt, which may keep the person from seeking
treatment and/or social support.
Some of the psychosocial stressors experienced by cancer survivors
include fear of cancer recurrence, fear of death, changes in personal and health
25


provider relationships, adjustment to physical symptoms and disabilities,
isolation, the need for social support, and economic problems (Fredette, 1995).
Given this, coping, strategies are essential to positive cancer survivorship
(Halstead & Femsler, 1994), so it seems natural to turn to some theories about
stress and coping for insight and useful concepts.
There are ample studies to suggest that individuals diagnosed with cancer
suffer psychological distress. A longitudinal study found that there was a decline
in the mental health status of newly diagnosed cancer patients (Ell et al., 1989).
The study examined both short- and long-term psychological adaptation post-
diagnosis. Even though illness-related factors improved among the more
psychologically distressed patients in the study, lack of improvement in
psychosocial resources was associated with continued poorer psychological
adaptation. Such studies show the dual dimensions of the cancer experience:
physical and psychosocial.
There is a need for social support that may not be met in the course of
conventional treatmenta situation that may cause continued distress and poor
quality of life. In one study focusing on the needs of newly diagnosed cancer
patients, 96% reported needs around physical problems, and 33% reported needs
related to psychological distress (Whelan et al., 1997). Two other studies showed
similar findings (Sanson-Fisher et al., 2000; Steginga et al., 1998). These studies
indicate that psychological distress is a common part of the cancer experience and
26


should be addressed along with physical needs, especially considering the fact
that psychosocial support has been associated with longer survival among women
with localized or regional stage breast cancer (Maunsell et al., 1995).
Some researchers regard CAM mainly as a form of parapsychiatry,
arguing that individuals tend to seek it for relief from psychological distress, and
suggesting that it fills the gap between conventional medicine and the use of
psychiatrists, who are more likely to prescribe drugs that will affect the physical
workings of the brain than to try to understand the complexities of the mind
(Kelwala, 1998). Though this may be true for some individuals, it may also be
true that certain forms of psychological distress may be related to physical
suffering, or that psychological suffering stimulates some individuals to seek
alternative forms of care for other symptoms.
It may be that cancer patients are turning to CAM in order to get both
physical and psychosocial needs met that physicians who practice conventional
medicine scarcely have time to address. Conventional western medicine focuses
primarily on cure, and in the very limited time that the system tends to allow
physicians to spend with patients, some of these needs tend to get overlooked or
left for other professionals to address.
The increase in CAM use may also reflect the desire of patients to have
different kinds of relationships with their health care providers. Research on the
disclosure of CAM use by breast cancer patients suggests that there are
27


differences in the relationships between cancer patients and their conventional
doctors and their relationships with CAM practitioners. A recent study (Adler &
Fosket, 1999) found that only 54% of patients disclosed their use of CAM to their
physicians. In comparison, 94% discussed details of their biomedical treatments
with their alternative practitioner, indicating that they felt more at ease
communicating with their alternative practitioners, and expected more disinterest
and negative responses from their conventional physicians. They also viewed
CAM as irrelevant to (i.e., not affecting) their conventional treatment. As a result,
they may not feel that it is worth bringing up with their conventional doctors,
especially if that means taking the risk of getting a negative reaction.
The Transactional Model of Stress and Coping
One of the most widely used theoretical perspectives related to health
behavior touches on the above mentioned dynamics: the Transactional Model of
Stress and Coping (Lazarus & Folkman, 1984). The purpose of the model is to
better understand how individuals cope with stressful experiences. The dynamics
of coping involve 1) the persons appraisal of the threatening or harmful nature of
the stressor; 2) his or her resources and ability to control the situation; and 3) the
capability to manage the negative emotional reactions that accompany it.
Lerman and Glanz (in Glanz, Lewis & Rimer, 1997, p. 116) discuss the
fundamentals of this theory. Primary and secondary appraisal, coping effort,
28


coping style, social support, and adaptation are key concepts of this theory.
Primary appraisal has to do with a person s judgment about the severity of threat
and controllability of an event or situation. It focuses on the features of the
stressful situation itself. Secondary appraisal, on the other hand, refers to a
persons assessment of his or her coping resources and options. Lazarus
emphasizes the importance of keeping in mind the functional value of the
coping process can seldom if ever be divorced from the context in which it
occurs (Lazarus, 1990, p. 105). Coping efforts focus on either problem
management or emotional regulation, and are referred to as problem-focused
coping and emotion-focused coping respectively. Coping styles refer to
dispositional characteristics of the individual, stable traits that drive appraisal and
coping efforts. Coping styles can have a direct effect on coping behavior and
emotional and physical outcomes of a stressful event. Optimism, information
seeking, and beliefs about the locus of control of events are examples of coping
styles.
Research on information seeking has led to the concepts of monitoring, or
the active seeking of information, and blunting, the avoidance of information.
Similarly, research on locus of control has led to the concepts of internal locus of
control, or the belief that events can be personally controlled, and external locus
of control, the belief that events and circumstances are more likely to be
controlled by factors outside of the individual. These characteristics are important
29


to coping efforts because those with an internal locus of control tend to be more
motivated to take action, while those with an external locus of control are more
likely to rely on outside guidance and direction.
Social support is another significant concept within the Transactional
Model of Stress and Coping. Social support provides opportunities for disclosure
of feelings, the exchange of ideas, and the recognition that there is help and
concern for the individual. These, in turn, can decrease the sense of personal risk
and severity, alleviate the sense of isolation, enhance the individuals perception
that he or she can cope with the situation, and facilitate comparisons that can help
build a more positive pierspective.
It is not stress itself that influences adaptational outcomes; it is the way in
which individuals cope with the stress (Lazarus, 1990, p. 98). According to
Lazarus, coping is defined as constantly changing cognitive and behavioral
efforts to manage specific external and/or internal demands that are appraised as
taxing or exceeding the resources of the person (Lazarus, 1990, p. 99). As
mentioned earlier in this paper there are two broad categories of coping: problem-
focused coping and emotion-focused coping. Problem-focused coping refers to a
person taking action to change the circumstances of a stressful encounter, while
emotion-focused (cognitive) coping regulates emotional distress by affecting what
is causing the stress, or by changing its meaning. As a result of this process,
30


emotional distress is alleviated, because the harmful or threatening relationship is
rendered subjectively benign (Lazarus, 1990).
How a person copes with a stressful situation depends on the type of
encounter faced by that person and his or her appraisal of it. Several types of
coping, however, do tend to be more productive, as they are related to
constructive action: positive reappraisal and planful problem solving. Lazarus
(1990) points out that these forms of coping are related to optimism, a personality
trait (or coping style) that other researchers have shown to correlate with positive
long-term adaptation (Scheier & Carver, 1987; Peterson, Seligman & Vaillant,
1988). Findings from a study of a short-term psychoeducational intervention for
cancer patients suggest that active coping behaviors can lessen the psychological
distress caused by stressful illness, decrease the amount of psychosocial
adjustment needed, improve the quality of life, and may even be associated with
longer survival times (Fawzy, 1995). A Canadian study found that women with
breast cancer who used CAM scored high on the use of problem-solving coping
and low on the use of escape/avoidance coping, suggesting a rational approach to
dealing with distress (Edgar et al., 2000).
Regardless of whether particular CAM approaches are proven effective for
alleviating conditions such as nausea, pain, anxiety or palliation, they may be
important as choices, as a way to take an active part in ones care. Perhaps they
are also a means of transforming the frightening, complex, often painful or
31


uncomfortable, and foreign world of serious illness and modem medicine into a
more bearable and comprehensible one.
Coping efforts can result in the containment of uncomfortable feelings, the
building of self-esteem, the maintenance of social relationships, self-actualized
well-being, and the generation of hope (J.F. Miller, 1992). All of this suggests an
improved quality of life through coping efforts. There is a connection between
quality of life, life satisfaction, and the ways that people cope with stress (Lazarus
& Folkman, 1984). A common finding across the cancer literature is that hope is
important to the process of coping with cancer (Rustoen, 1995). Hope goes hand
in hand with motivation (Nowotny, 1989, Pierce, 1981). One will not take coping
action without some level of hope, and coping efforts, in turn, serve to generate
hope.
Another study showed an association between the new use of CAM,
impaired quality of life, and greater psychosocial distress among patients with
breast cancer (Burstein et al., 1999). According to the results of that study,
patients who used alternative medicine reported higher levels of distress, on
average, than those patients who did not, and new use of alternative medicine was
independently associated with poorer scores on measures of mental health,
depression, fear of recurrence, and physical symptoms. These results were met
with a number of counterarguments emphasizing that the associations reported in
the study should not be misconstrued. For instance, the above results do not
32


necessarily mean that the use of CAM results in distress and lower quality of life
for breast cancer patients (Astin, 1999; Erast, 1999; Pouwer, 1999; Rubes, 1999).
It may be that, over time, alternative approaches actually alleviate such
symptoms, rather than contributing to them. Even if breast cancer patients who
are new users of alternative medicine do experience higher levels of distress, it
may be the distress that leads them to seek out the alternative approach in the first
place. The choice to use CAM may represent a proactive coping attempt to
alleviate psychosocial symptoms, and improve quality of life (Sollner et al.,
2000).
The Salutoeenic Model of Health
Aaron Antonovskys salutogenic model of health is particularly useful for
understanding the data from the present study, and provides an alternative
theoretical approach to understanding the basis for health, and the relationship of
stress and coping to health. In Health. Stress, and Coping (1979), Antonovsky
traces the evolution of his salutogenic model, which is further conceptualized in
Unraveling the Mvsterv of Health (1987). Early on, he became interested in the
concepts of stress and adaptability, which he considered to occur at
psychological, social, and cultural levels (1979, p. 5). A study he and several
colleagues carried out on menopause-adaptation among women in five Israeli
subcultures led to a major insight that became a central element in his thinking
33


about stress: the crucial variable in successful adaptation was not the content of
culture and social structure but its relative stability over time. This insight was
reinforced further when he realized that, although the concentration camp
survivor subgroup of the study sample of menopausal women was, as a whole,
less well adapted, it still contained more than a few women who were well
adapted, in spite of having lived through such a horrendous and inhumane
experience (1979, p. 7). This indicated that these individuals had or did
something that allowed them to adapt better to stressors. What they had were
what Antonovsky eventually termed generalized resistance resources, any
characteristic of the person or environment that can facilitate effective tension
management (1979, p. 99).
The salutogenic model is based on the recognition that stressors are an
ever-present part of human existence (1979, p. 70), and that no one is in a perfect
state of health. Antonovsky states the following (p. 9):
The hard data indicate that at any one time, at the least one third
and quite possibly a majority of the population of any modem
industrial society is characterized by some morbid, pathological
condition, by any reasonable definition of the term.
This means that significant departures from the clinical picture of health are,
statistically, far from unusual (p. 15). Everyone, according to this perspective, is
in the process of physical or psychological breakdown, and there is no objective,
sharp division or cut off point between healthy and sick. This is in contrast to the
34


pathogenic model, which is based on the perception of a fundamental dichotomy
between healthy and sick people (1979, p: 3), and the assumption that the living
organism is characterized by self-regulatory, homeostatic processes which
periodically become disregulated (Antonovsky, 1987).
Antonovsky makes an analogy between the ubiquity of stressors in human
existence and the Second Law of Thermodynamics, which posits an inevitable
increase of positive entropy, or disorder, within closed systems (1979, p. 120).
The continual increase in entropy in closed systems dooms them to proceed
toward maximum entropy, which is death. Although this law concerns closed
systems, it is still a useful analogy for human organisms, which are open systems.
The advantage of open systems is that they can take in negative entropy (order)
from the internal and external environments. Open systems, defined as having
borders permeable to energy, matter, and information, are thus by definition not
irrevocably doomed to death (Antonovsky, 1987, p. 167). This also means that
they are always in a state of nonequilibrium, continually balancing entropy and
negentropy, always in a state of dynamic homeostasis, which refers to the process
whereby the parts of a system contribute to maintaining the functioning of the
system when it experiences disturbances (1987, p. 167).
Antonovsky makes the distinction between disease, the prevention and
cure of which is the concern of all medicine, and dis-ease (illness), or the problem
of breakdown. He perceives health and illness as representing points on a
35


continuum, which he refers to as the health easj/dis-ease continuum or the
breakdown continuum (1987, p. 3). If a person is in a state of low breakdown,
he or she is on the healthy end of the continuum. The goal of salutogenically-
oriented research is to understand why certain people or groups of people tend to
function toward the low end of the breakdown continuum. According to this
perspective, it is more useful, when seeking to understand health and illness, to
study the location of an individual on this continuum; therefore, the emphasis of
research would be on factors that promote movement of the individual toward the
healthy end of the continuum. A key question within the salutogenic perspective
is, why, under similar conditions, do some people, or groups of people, tend to be
healthy while others tend more toward the dis-ease end of the continuum?
This orientation is very different from the conventional pathogenic model,
whereby the focus is on disease, and the question might be, why do some people,
or groups of people, get sick? Since the breakdown approach to understanding
health emphasizes that ones place on the continuum is a subjective phenomenon,
a persons location on the continuum must be determined by subjective criteria.
Movement along the continuum is closely related to who defines the situation.
According to Antonovsky (1979, pp. 57-64), there are four facets of
breakdown: pain, functional limitation, prognostic implication, and action
implication. Pain, which is a subjective phenomenon, must be defined by the
individual whose breakdown status is being measured. The researcher or clinician
36


must ask the individual whether or not she is experiencing pain, and to what
extent. Functional limitation refers to a persons subjective opinion as to whether
or not, and to what extent, the state or condition of their health prevents them
from carrying out the activities of living that they feel it is appropriate for them to
engage in. Prognostic implication rests on professional, institutionalized
knowledge, and is determined by the opinions of formal authorities within the
disease care institutions of the society within which the individual lives, such as
physicians in Western societies. These formal authorities make prognoses based
on a given set of signs and symptoms. Action implication refers to actions that are
recommended by health professionals in a particular society for a particular
condition. Though the norms may differ widely between cultures, once a health
condition of concern has been diagnosed, all cultures have appropriate action
responses for dealing with the conditions. According to Antonovsky, once a
breakdown classification has been made, the next step would, ideally, be for the
clinician to make an action recommendation to the suffering individual and let the
individual decide what he or she wants to do.
In Antonovskys view, the belief that conquering disease can be
accomplished by conquering one disease after another is an illusion, since
pathogens are ubiquitous and will forever cause problems to which individuals
will have to adapt. Although he concedes that research on the etiology of disease
is indeed useful for curing and preventing particular diseases with which people
37


suffer, the key concern in terms of promoting health, according to the salutogenic
model, is not so much the control of individual disease states but the
understanding and promotion of what helps people to adapt to stressors. In the
dichotomous orientation of biomedicine, the pathology gets most of the attention,
rather than the person and his or her total experience of illness. In Antonovskys
words, Salutogenesis, by contrast, opens up, or even compels us to examine,
everything of import about people who are ill, including their subjective
interpretations of their state of health (1979, p. 37).
Antonovsky defines stressors as demands to which there are no readily
available or automatic adaptive responses (1987, p 28), and that, consequently,
lead to a state of tension. He states the following (1979, p. 70):
In response to a stressor, the organism responds with a state of
tension. This state can have pathological, neutral, or salutary
consequences. Which outcome results, depends on the adequacy
and efficiency of tension management. Poor tension management
leads to the stress syndrome and movement toward dis-ease on the
continuum. Good tension management pushes one toward health
ease.
Antonovsky points out that whether a given phenomenon, experience, or
stimulus can be regarded as a stressor depends on the meaning of the stimulus,
and on the automatic homeostasis-restoring mechanisms available to the person.
In addition to the definitions above, Antonovsky defines a stressor as a
characteristic that introduces entropy (disorder) into the system (e.g., a person), a
38


life experience characterized by inconsistency, under- or overload, and exclusion
from participation in decision making. He states that the pathogenic orientation
invariably sees stressors as pathogenic, as risk factors, which at best can be
reduced, inoculated against, or buffered (1987, p. 7) but, according to the
salutogenic model, it is unmanaged, or inappropriately managed tension that is the
problem, more than the stressors that cause the tension. It is, therefore,
important to distinguish between tension, the response of the organism to
stressors, and stress, the state of the organism in response to the failure to manage
tension well and to overcome stressors. Tension may even be salutary; stress is
related to dis-ease (1979, p. 10). The therapeutic implications of each of these
orientations are distinctly different (Antonovsky, 1987, p. 9, emphasis in
original):
The pathogenic orientation leads researchers, practitioners, and
policy makers to concentrate on the specific disease diagnosed or
on prevention of specific diseases, particularly among high-risk
individuals or groups... Salutogenesis, more pessimistic, leads us to
focus on the overall problem of active adaptation to an inevitably
Stressor-rich environment. The key term becomes negative
entropy, leading to a search for useful inputs into the social system,
the physical environment, the organism, and lower-order systems
down to the cellular level to counteract the immanent trend toward
entropy. Not accidentally and of considerable import, it opens the
way for cooperation between biological and psychosocial
scientists. When one searches for cures for particular diseases, one
tends to stay within the confines of pathophysiology. When one
searches for effective adaptation of the organism, one can move
beyond post-Cartesian dualism and look to imagination, love, play,
39


meaning, will, and the social structures that foster them. Or, as 1
would prefer to put it, to theories of successful coping.
Other key concepts in the salutogenic model are what Antonovsky calls
generalized resistance resources, or GRRs and sense of coherence, or SOC.
A generalized resistance resource is any characteristic of the person, the group, or
the environment that can facilitate effective tension management (1979, p. 99).
The sociocultural and historical context, idiosyncratic factors, and chance are the
sources of generalized resistance resources. Societies and subcultures create
cultural images of the world and particular social conditions, such as patterns of
childrearing and social organization. The extent to which those images and
conditions are clear and lead to predictability and comprehensibility determines
the extent to which being a member of those societies or Subcultures provides
contexts conducive to building generalized resistance resources that allow us to
perceive our internal and external environments as meaningful, predictable, and
ordered (pp. 151-152).
Specific resistance resources (SRRs) also play a role in tension
management. Specific resistance resources are those resources that are useful in
particular situations of tension. Antonovsky points out that general resistance
resources determine the extent to which specific resistance resources are available
to people in a society (1979, p. 99). The example he uses is that of being literate
or having wealth, which makes available many specific resistance resources, such
40


as knowing ones way around a hospital bureaucracy. A pluralistic medical
system would be a generalized resistance resource, while a breast cancer support
group is an example of a specific resistance resource.
Generalized resistance resources can be physical-biochemical, such as
immunopotentiating mechanisms; material, such as wealth; cognitive and
emotional, such as information, knowledge, and ego-identity; valuative-
attitudinaL, such as coping styles and coping strategies; interpersonal-relational,
such as social ties and social networks; and macrosociocultural, such as religion
and social structure (1979, pp. 103-119). According to Antonovsky, The extent
to which our lives provide us with GRRs is a major determinant of the extent to
which we come to have a generalized, pervasive orientation that I call a strong
sense of coherence (1979, p. 122).
The sense of coherence is a crucial element in an individuals basic
personality structure that is shaped, tested, reinforced, and modified over the
course of ones life, and it is one of the major factors that determine whether, and
how, a person will take action to manage tension: Antonovsky defines the sense
of coherence as follows (1987, p. 19):
The sense of coherence is a global orientation that expresses the
extent to which one has a pervasive, enduring though dynamic
feeling of confidence that (1) the stimuli deriving from ones
internal and external environments in the course of living are
structured, predictable, and explicable; (2) the resources are
available to one to meet the demands posed by these stimuli; and
41


(3) these demands are challenges, worthy of investment and
engagement.
Ones sense of coherence, like health, represents a position on a
continuum, and is a global orientation, a way of looking at the world. A person
does not need to see their entire objective world as coherent in order to have a
strong sense of coherence. In Antonovskys words (1987, p. 22):
The crucial issue is whether there are spheres of life that are of
subjective importance to the person. .If there are, then the question
arises whether the person sees these important areas as
comprehensible, manageable, and meaningful.
Ones sense of coherence represents a dispositional orientation rather than a
response to a specific situation:
The strong-SOC person will tend to seek to impose structure on the
situation, even when to the outside observer there is little structure;
will tend to search for what seems to him to be the appropriate
GRRs and SRRs that may facilitate coping with the situation; will
tend to consider options within his canon; will tend to believe in
self-efficacy; and will tend to accept the challenge of the situation.
The weak-SOC person, in contrast, will manifest the tendency to
see chaos, to feel hopeless and burdened.. .In other words, the SOC
will be applied, as a dispositional orientation, in a concrete
situation as an emotional and cognitive appraisal of the situation.
(Antonovsky, 1987, p. 186)
The concept of sense of coherence comes very close to Banduras (1977)
concept of self-efficacy. For instance, Antonovsky states that A salutogenic
orientation.. .can lead to working with the patient to engage in goal-oriented
behavior that promises success, thereby strengthening the sense of coherence
(1979, p. 125). Similarly, perceived self-efficacy is strengthened through mastery
42


experiences, that is, experiences in which an individual has an opportunity to
actually perform an action and witness the desired outcome. Antonovsky points
out the similarities between Banduras self-efficacy theory (1977), stating that
Banduras three conditions for efficacious behavior are very similar to the three
components of the SOC (1987, p. 59):
First, there is the belief that the intended outcome of a given
behavior is of value to one (that is, meaningfulness); second, the
belief that performing the behavior will indeed lead to that
outcome (that is, comprehensibility); and third, the belief that one
can successfully perform that behavior (that is, manageability).
Although there are similarities between Banduras self-efficacy theory and
the concept of SOC, self-efficacy is not defined as a global, dispositional
orientation to life. According to Bandura (1977) self-efficacyones perception
that one can cany out the necessary action(s) to bring about a desired outcome
is largely behavior specific.
The core components of a sense of coherence are comprehensibility,
manageability, and meaningfulness and are defined by Antonovsky as follows
(1987, pp. 16-18):
1. Comprehensibility: This refers to the extent to which one perceives the
stimuli that confront one, deriving from the internal and external environments, as
making cognitive sense, as information that is ordered, consistent, structured, and
clear, rather than as noisechaotic, disordered, random, accidental, inexplicable.
43


2. Manageability: This refers to the extent to which one perceives that
resources are at ones disposal that are adequate to meet the demands posed by the
stimuli with which one is confronted. These can be resources that are under ones
own control, or controlled by legitimate others who one feels one can count on.
3. Meaningfulness: This refers to the extent to which one feels that life
makes sense emotionally, that at least some of the problems and demands posed
by living are worth investing energy in, are worthy of commitment and
engagement, and are challenges that are readily taken on. Even when one is
presented with an unhappy experience, he or she will willingly take up the
challenge, will be determined to seek meaning in it, and will do his or her best to
overcome it with dignity.
A person with a strong sense of coherence has confidence and faith that,
for the most part, things will work out well. Having a strong sense of coherence
does not necessarily mean that one is in control, although it does involve one as a
participant in shaping ones life experiences and fate. The important thing is that
power is located where it is legitimately Supposed to be, and this legitimacy
assures that issues will be resolved in ones interests (1979, p. 128). Interestingly,
Antonovsky points out that the internal-external locus of control concept and
scale that are frequently used in research on stress and coping reflect a culture-
bound conceptualization of the sense of manageability. In this regard, he states
the following (1987, p. 52):
44


This culturally narrow scale posits only two alternatives: either/
control matters or someone else or something out there does. It
posits a fundamental mistrust in power being in the hands of
anyone else.. .But these are only two alternatives. One may be
very high on my manageability [component].. .when there is a
strong trust in legitimate others as well as in oneself. This does not
mean that one has no responsibility; quite the contrary is true. It
does mean that power need not be in one's own hands, except the
power to accord or withdraw the legitimacy of others.
The following excerpt from Health. Stress, and Coping (1979) serves as a
brief summary of the salutogenic model and demonstrates how the model
incorporates elements of sociocultural, behavioral, and psychoanalytic theories
(pp. 187-189):
If a strong sense of coherence is to develop, one's experiences
must be not only by and large predictable but also by and large
rewarding, yet with some measure of frustration and punishment.
The outcome depends on the underload-overload balance.
One emerges from childhood, then, with some formed
albeit tentative sense of coherence. In adolescence, the crucial
stage of ego identity, tentativeness begins to be transformed into
definitiveness. If ones experiences continue to be by and large cut
of the same cloth as earlier experiences, ones sense of coherence
is reinforced.
Entering young adulthood, one has acquired, as it were, a
tentative level of the sense of coherence, a picture of the way the
world is.. .By the time a decade or so has passed, if not sooner, the
tentativeness has been transformed into a considerable degree of
permanence. One selects and interprets experiences to conform to
the established level of the sense of coherence. It is unlikely, then,
that one's sense of coherence, once formed and set, will change in
any radical way. Fluctuations will be minor.
We can point to two major ways in which an adults sense
of coherence can undergo fairly significant transformations. First,
there is the cataclysmic stressor.. .which transforms a great variety
of life experiences, often in a brief period of time, through a
45


considerable change in ones GRRs. One has had no hand, no
choice, in this experience and often no preparation for it.
Whatever ones previous level of sense of coherence, this is
inevitably a major disruption of ones life, particularly when there
has been no anticipatory socialization. Slowly and painfully, one
can choose experiences that, offering meaningful stimuli, rebuild
ones sense of coherence.. .No less can the opposite pattern
characterize ones life.. .Movement toward the strong end of the
continuum always requires hard work.
As mentioned in the previous section of this thesis, Lazarus and Folkman
(1984) developed the transactional model of stress and coping. Within that model
they introduced the concept of coping strategies and emphasized that people use
different coping strategies, depending on the stress situation they face.
Antonovsky (1979, p. 112) also includes the concept of coping strategies in the
salutogenic model, but emphasizes that .. .coping strategies are always conducted
in a historical-cultural as well as in a situational context. Coping strategies, as
defined by Antonovsky, are overall plans of action for overcoming stressors,
plans that are characterized by rationality, flexibility, and farsightedness. He
argues that the more a coping strategy is high on these characteristics, the more
effective a generalized resistance resource it will be.
The extent to which life provides people with generalized resistance
resources is a major determinant of the extent to which they will come to have a
strong sense of coherence (Antonovsky, 1979, p. 122). Peoples everyday lives
can also create resource deficits (RDs), and leave them with a disadvantage in
terms of managing particular sources of tension. Major psychosocial generalized
46


resistance resources create life experiences characterized by consistency,
participation in shaping outcome, and an underload-overload balance and, thus,
give rise to, or reinforce, a strong sense of coherence (1987, p. 28). A strong
sense of coherence is essential to managing tension effectively, and managing
/
tension effectively is essential to maintaining good health.
Conceptualization of the Cancer Experience
The conceptualization of experience is another process relevant to both
how individuals cope with cancer and the use of CAM. The results of a
qualitative study by Brown and Carney (1996) to explore the beliefs among breast
cancer patients who use CAM found that beliefs about the cause of illness were
similar between a group of patients who used conventional therapies alone and a
group that used both conventional and unconventional therapies. On the other
hand, the study showed beliefs about recovery varied between the groups.
Interestingly, the study found that patients who used both conventional and
unconventional therapies perceived their beliefs to be recently formed and largely
influenced by their cancer experiences, while those in the conventional group had
long-standing beliefs. These results seem to counter the assumption that certain
long standing beliefs predispose particular individuals to choose to use CAM;
rather, they indicate that cancer patients may undergo a transformation from their
47


long standing beliefs as a result of their cancer, or that their beliefs may even be
influenced by the use of CAM.
Subjective meanings of illness can be discovered through the use of
narratives, or the development of ethnographies of patients in terms of their
illness experiences (Kleinman, 1988). The results of such a process are
multidimensional, providing not only useful information for the physician, but
also an opportunity for the patient to frame or reframe the disease experience. It
may be that the process of framing/reframing leads to the use of CAM, or that it is
a consequence (intended or not) that cancer patients get from the use of particular
types of CAM.
A similar concept to illness narratives is that of pathographies, or personal
stories of illness. Pathographies are interpretations of the illness experience,
explanations of the process of change one goes through in learning to live with
a
serious illness, which can be partially built around mythic concepts, as in the use
of common metaphors of battle, journey, death, and rebirth (Hawkins, 1999).
Pathographies are individuals attempts to orient themselves in the world of
sickness through the reestablishment of order or coherence, the achievement of a
new balance between self and experience, and the creation of meaning within the
illness experience (Hawkins, 1999). This suggests a human tendency (or need) to
build a new perspective when the order and meaning of ones life is interrupted by
48


serious or chronic illness. It may be that this process is necessary for complete
healing to take place.
There is evidence that the physical and psychosocial adjustment that many
cancer patients experience as a result of being diagnosed with cancer and going
through treatment can, for some, lead to personal growth, a process that has been
referred to as Social-Cognitive Transition (Brennan, 2001). A study by Thomas
and Retsas (1999) lends further support to this contention. The study states that
people with terminal cancer develop a spiritual perspective that strengthens their
approaches to life and death (p. 191) and that they develop their spiritualness as
they make sense of and come to terms with their diagnosis (p. 194). It is part of
what the study refers to as a process of transacting self-preservation. If this is
true for other cancer patients as well, it is possible that a more holistic perspective
is developed as a result of coping with the cancer experience, and might be
present prior to the use of CAM. This would suggest an alternate explanation to
the one that assumes a long-standing holistic philosophy of health that
predisposes them to use CAM.
The Sociocultural Context of Illness and Healinp
The body, illness, and healing are subjectively experienced and influenced
by social and cultural factors. Scheper-Hughes and Lock (1987) urges the reader
to consider the body as simultaneously a physical and symbolic artifact, as both
49


naturally and culturally produced, and as securely anchored in a particular
historical moment and emphasizes the constant exchange of meanings between
the natural and social worlds (p.7). It also points out the fact that
conceptualizations of the body influence ways in which health care is planned and
delivered in Western societies and suggests three perspectives of the body that are
useful for understanding the cultural sources and meaning of health and illness.
The first, is as a physical body (the lived self), separate from other individual
bodies. The second, is as a social body, one that represents the body as a symbol
by which to conceptualize nature, society, and culture. The third perspective is
that of the body politic, which has to do with the regulation and control of
individual and social bodies (populations) in an effort to produce docile bodies
and pliant minds in the service of some definition of collective stability, health,
and social well-being (p. 8).
Kleinman (1980) states that Constructing illness from disease is a
central function of health care systems, a coping process, and the first stage of
healing.. .It is both a psychosocial and cultural adaptive response (p. 72).
' *
Similarly, healing takes place within a sociocultural context that shapes the
choices and resources available to the people in a society. According to
OConnor (1995, p. 4):
In the United States, as in any complex society, there is an
encompassing officialthat is, authorized and authoritative
culture, which coexists with any number of distinctive cultural
50


subsets. The sanctioned practices, values, and institutions of the
official culture are backed by considerable social, economic, and
political power. Among these official values is the singular
prestige accorded to science and its associated professions, and the
sanction of formal education and academically legitimated
research procedures (with a strong emphasis on scientific
experimentation) as the primaryif not the solevalid means of
knowledge. Among the official institutions is the single authorized
and legitimated system of health care.. .The conventional medical
system enjoys the approval, cooperation, and protection of the
countrys legal system and other supporting social institutions:
government licensing and regulatory bodies, third party payment
systems, preferred access to federal and private research monies,
high prestige and social status and their concomitant benefits,
including professional associations with substantial lobbying
power and professional publications with influential reputations for
authority. By contrast, all other health belief systems in the United
States are unofficial and can be described collectively as being
unconventional.
Kleinman (1980) points out that although the modem conventional
medical profession claims dominance over the medical field as a whole, and its
claim is sanctioned by government, in actual practice it accounts for only a small
percentage of what goes on in that field.. .the biomedical reductionism and
technological fixes it employs are inadequate to understand and treat most
problems in health care (p. 381, emphasis in original). Kleinman suggests that,
in order for the medical professions to be widely effective, they must be reshaped
to include health and illness, and the everyday context of sickness and care, rather
than merely focus on disease. Considering the fact that health care systems are
socially and culturally constructed and, as such, they are forms of social reality,
51


he argues that for this to occur, social science must be brought into medicine (p.
35).
Kleinman (1980, p. 49) considers health care systems in terms of a model
based on localities (communities, neighborhoods, families), a model that
describes integrated local systems composed of sectors, clinical relationships, and
roles, in which clinical reality is differently construed. He emphasizes that it is
the system as a whole that heals. Kleinman conceptualizes health care as a local
cultural system composed of three overlapping parts: the popular, professional,
and folk sectors (1980, p. 50, emphasis in original). Each sector has a different
way of explaining and treating illness, and of defining and ordering patient-health
care provider relationships.
The popular sector is the largest sector and includes the individual, family,
social network, and community beliefs and activities. Although people also seek
help from the folk and professional sectors, it is within popular culture that illness
is at first defined and health care choices initiated. This sector encompasses lay
and non-professional forms of health care.
The professional sector encompasses the organized healing professions, or
modem scientific medicine, including professional medical organizational
structures and services. Though this may be changing to some extent, the
professional sector tends to require that its form of clinical reality be accepted as
the only legitimate clinical reality (Kleinman, 1980, p. 58).
52


The folk sector encompasses many different non-professional, non-
bureaucratic, specialist beliefs and practices, some closely related to the other two
health care sectors. Folk healing, such as shamanism, ritual healing, and folk
remedies would be included in this sector.
Each of these sectors has its own types of therapeutic intervention and
avenues for referral, and address particular types of illness and aspects of the
illness experience (OConnor, 1995, p. 64). Ill people tend to move freely
between the three sectors of health care. At times, they may make use of
resources from all three sectors at the same time. This is likely so because each
sector alone cannot provide equal relief for both physical and emotional suffering
(Helman, 1994). The structural components of the sectors interact as patients
move from one sector to another during their illnesses experiences, and the
popular sector links the more differentiated folk and professional sectors
(Kleinman, 1980, p. 60).
According to Kleinman, cross-cultural research has shown that there are
general health care functions common to all health care systems, although he
stresses that there is a great deal of variation in the mechanisms that perform these
functions within different systems. Each of the health care sectors (popular,
professional, and folk) contributes, to some degree, to the following core clinical
functions (1980, p. 71, emphasis in original):
1. The cultural construction of illness as psychosocial experience
53


2. The establishment of general criteria to guide the health care seeking
process, and to evaluate treatment approaches that exist prior to, and
independent o£ individual episodes of sickness
3. The management of particular illness episodes through communicative
operations, such as labeling and explaining
4. Healing activities per se, which include all types of therapeutic
interventions, from drugs and surgery to psychotherapy, supportive care,
and healing rituals
5. The management of therapeutic outcomes, including cure, improved
functioning, treatment failure, recurrence, chronic illness, impairment, and
death
Kleinman (1980, p. 72) defines disease as the malfunctioning of biological
and/or psychological processes. Illness, on the other hand, refers to the
psychosocial experience and meaning of perceived disease, and includes
communication and interpersonal interaction, particularly within the context of
the family and social networks.
What Kleinman feared and fought against with the writing of Patients and
Healers in the Context of Culture was what he described as the total separation
of medicine as an organized practice from the personal and social context of
sickness and care (1980, p. 383). His solution to the problem is the integration
of biomedical and ethnomedical frameworks. Such a medical model would
54


include social and cultural questions and methods, and would be a new
comparative science of sickness and healing to which both biomedical analysis
and cultural analysis contribute. The focus would be the meaning context of
illness and health care, with the goal being the cross-cultural understanding of
clinical categories and praxis. The means of doing this would be to study the
everyday context of health and illness in the popular sector, and to focus on the
non-professional side of the health field, especially its positive adaptive features.
Kleinman feels strongly that we need a radical shift in the way health care in
society is organized and practiced, and that the structure and function of the
popular sector must be changed in order to enhance its adaptive efficacy.
Kleinmans suggestions regarding the integration of biomedical and
ethnomedical frameworks are his answer to the problem of the lack of
understanding of biomedical physicians regarding the sociocultural aspects of
illness, and their reluctance to address the psychological and emotional needs of
their patients. Although his aims are useful, such integration risks the
incorporation of ethnomedicine into the conventional medical system and,
therefore, the loss of control over what ethnomedical interventions can
legitimately include.
Given that popular remedies have historically been consistent with their
social and cultural contexts, it has been suggested that the cultural paradigms
regarding health beliefs and practices may be changing (Cassileth, 1989). The
55


recent rise in the number of people who use CAM may reflect this paradigmatic
shift. Given this, the use of CAM may not be the action of rebellion against the
use of conventional medicine, as some might suggest. It may just be an example
of the use of additional, available cultural resources to get needs met.
On the other hand, does behavior change regarding health care choices by
people in a society necessarily require a change in the larger cultural paradigm
regarding health and illness? Perhaps need is also an important driving force. A
case has been made in the medical anthropology literature that belief systems do
not necessarily have to be changed in order for health-related behavior to change
(Foster & Anderson, 1978: 244):
In feet, as we will see, a remarkable thing about changing health
practices is the extent to which this can occur in the absence of
understanding of the underlying scientific rationale for so doing.
Traditional peoples are skillful in reconciling new practices with old
beliefs.
They are referring here to modifications in health care practices among
traditional peoples, rather than people from modem, complex societies;
however, this can be extended to all peoples. People from different cultural
contexts are not so different in their capacity to make behavioral modifications
when necessary or desired, without having to adopt a profound change in belief
systems. People everywhere are fundamentally pragmatic in response to crises.
56


Globalization of Medicine
The globalization of medicine is another force that determines what health
care resources are available to the people within a society and, thus, the health
care choices they make. Above all, the globalization of medicine is a social
process. There are many reasons that people in one culture use a practice that
originates in another. The forces that make a particular resource available to an
individual as a therapeutic choice can originate at macro or micro levels of
sociocultural context. While individuals have physical, emotional, psychological,
and spiritual needs that they may be motivated to address, the amelioration of
such needs occurs within a sociocultural context that makes particular resources
readily available, and others not so available. The forces that influence what
resources people have access to, including non-Westem medicine, are,
increasingly, global forces, such as marketability and mass media representations
(Hog & Hsu, 2002; Janes, 2002).
The infusion of medical practices from one culture to another has to do
with sociocultural processes, such as the acquisition of knowledge through
various channels, national and local. It also has to do with individual agency,
which rests on personal motivation and efficacy. As will be discussed later in this
thesis, women who are diagnosed with breast cancer read fervently, join support
57


groups, and talk to other women, so knowledge acquisition is a continual part of
the healing process. Throughout the cancer experience, they are exposed to new
information, some of which has to do with resources available to them that might
help them to heal, depending on their personal needs.
The literature on the globalization of medicine is important to a
comprehensive understanding of how breast cancer survivors in the U.S. come to
use CAM. A number of the most common forms of CAM used (e.g.,
acupuncture, yoga, certain dietary practices, qigongs Reiki) originated in Asian
countries. According to Hog and Hsu (2002), medical practices being utilized
within new cultural contexts, such as Asian medicine used in Western
sociocultural contexts, tend to be recontextualized and transformed in the
recipient culture. Divorced of its original context, a therapeutic practice tends to
be used creatively by the individual, whether practitioner or patient. The reasons
for, and ways in which acupuncture was originally practiced in China, therefore,
may be different from the reasons for, and ways in which it is practiced in the
U.S., and from one individual to another. In other words, newly incorporated
extra-cultural medical practices are locally adapted. Janes (2002, p. 286) ponders
whether the set of practices that in an historical sense has come to constitute
Tibetan medicine will be recognizable much longer in these increasingly variable
global constructions. Interestingly, the participants in the present study did not
mention Tibetan, or even Asian, medicine per se, but did make use of massage,
58


herbal remedies, and acupuncture, and did use the concepts of balance,
energy, and holism, all of which derive from Asian medicine.
This transformation of extra-cultural medical practices can result in the
use of such practices by people who dont fully understand the belief systems and
ideologies that generated them. The present study supports this, as will be
discussed later in this thesis. One possible reason for this is that people tend to
identify and use therapeutic modalities for specific ailments, rather than as a
whole system of healing. Another reason is that, when Asian medical practices
are introduced into Western sociocultural contexts, the medical technologies and
medicines inherent in those practices become commodities in the capitalist
context. In this way, they become not only healing resources for patients, but also
economic resources for practitioners (Hog & Hsu, 2002). Since the use of
commodities is economically driven, practitioners are likely to perform particular
practices, even for patients who do not have, or take, the time to understand the
underlying philosophies or larger cultural ideologies from which the practices
originate.
The point here is that the forces are many that result in the use of CAM by
people in the U.S. The use of CAM, like the use of all medical practices, takes
place in a context of tension between macro-social processes and micro-social
events (Janes, 2002). This tension is referred to in Hog and Hsu (2002) as a
countervailing creativity, a concept that refers to the interdependency between
59


individual agents healers, doctors, patients and larger networks such as clinics,
the health care system, and the general socio-political context, which challenges,
counteracts, complements, and sometimes also exploits the routine of the medical
establishment (p. 206). As Janes explains (2002, p. 281), the social imagination
(imagination as social practice), a practice through which groups of people define
and attempt to solve problems, is:
.. .anchored historically to the contexts in which it takes social and
ideological form. What this means in the context of medical
pluralism is that the multitude of social and epidemiologic
processes that affect the structure of health care and the needs and
desires of its users give a particular force to the imagination, and a
direction to the discourses it produces... Imagination provides
people with a new language for articulating suffering, its causes
and consequences, and thus plays an important role in constructing
local pluralistic practices from global possibilities.
Not all new medical practices are taken up because they are in harmony
with the practices of the culture that is adopting them. Sometimes they are
counter to it and, thus, attractive. Janes (2002), for instance, describes Asian
medicine as a paradise lost that is often incorporated into the new locality
precisely because of its otherness. At other times, newly adopted medical
practices are congruent with a growing popular ideology about health and illness.
We know from anthropological and sociological research on religion and
spirituality that individuals in modem western cultures are increasingly eclectic in
their choice of religious and spiritual beliefs and practices, including beliefs and
practices that help them attain health and well-being. Many people in the U.S.
60


tend to use a mix of alternative medical approaches from a wide range of cultural
traditions, and in the U.S. as a whole, there are multiple meaning systems, each of
which has different implications for understanding, describing, and finding
meaning in illness and health (McGuire, 2002, p. 410). As Ohnuki-Tiemey
(1984) pointed out nearly two decades ago, it is not necessary for people to adopt
new systems of belief and practices in their entirety in order for them to select
useful and coherent beliefs and practices from other cultural traditions.
Janes (2002) points out that Tibetan medicine (incorporating Buddhist
philosophical elements, such as the belief in the importance of balance to health)
entered an epidemiological context in the West characterized by a growing
prevalence of chronic diseases and diseases common in an aging population.
These are diseases biomedicine was not fully prepared to address. It was, and
increasingly is, a context ripe for testing the waters of non-Westem medical
philosophies and practices.
Medical Pluralism
Most societies provide numerous means for people to seek help or help
themselves, when they are dealing with physical or emotional discomfort. In
other words, they exhibit health care pluralism. Health care pluralism refers to
the existence within the same society of diverse ways of explaining, diagnosing
and treating disease and illness, approaches that may be based on very different
61


concepts and assumptions (Helrnan, 1994). Kaptchuk and Eisenberg (2001a)
points out that the presence of alternative medicine is not new in American
oL
medical history. In fact, before the early 19 century, U.S. medicine was a
shifting collection of coexisting options not rigidly or permanently defined (p.
189). Over time, competition for legitimacy and authority between the many
forms of medicine created factions in the system. The body of medical
practitioners who had graduated from medical schools eventually gained power,
boosted by the growing authority of science in Western ideology.
In pluralistic medical systems, one form of health care tends to
predominate as the official health care system, but others are allowed to exist to
the extent that they do not interfere too radically with the official system. Some
alternative practices become integrated into health care systems; but usually only
as a result of accommodation to conventional biomedicine (Cant & Sharma,
1999). Health care systems represent complex social, cultural, and political
systems, and not all parts of health care systems evolve to incorporate new
elements at the same rate. Patients who aspire to use CAM consequently can find
themselves without monetary, medical or social support for such use (Cant &
Sharma, 1999). The widespread use of CAM suggests that, for many, the results
are worth the sacrifice.
In order to understand how individuals in a particular society perceive and
react to illness, one must understand the beliefs, values, and customs regarding ill-
62


health that are part of their wider culture, as well as the social organization of
health and illness in their society (Helman, 1994). In order to study health care
pluralism, one must consider both cultural and social aspects of the types of health
care available to individuals in a particular society. They will likely link up, in
some way, to aspects of the wider cultural and social context (Helman, 1994).
Most societies have pluralistic medical systems. Studies of medical
pluralism in other cultures have yielded interesting and valuable information that
can help us to see the dynamics of medical pluralism in our own culture. A
prominent study of medical pluralism in Japan (Ohnuki-Tiemey, 1984) provides a
look at the use of biomedicine in the context of culture and society. It emphasizes
that the use and interest in new medical practices must be seen within the broader
context of the changing worldview. For instance, a significant factor in the
success of medical pluralism in Japan is the extent to which each medical system
has become embedded in Japanese culture and society. Some approaches used in
Japan are of foreign origin, but they have been integrated into the larger health
care system because the ideas and assumptions upon which they rest have become
thoroughly embedded in popular Japanese folk notions of health and illness. This
integration of new medical practices takes place in most societies (Ohnuki-
Tiemey, 1984), including the United States. Perhaps the underlying philosophies
of the most commonly used types of CAM are, in some ways, not so different
from the philosophies of the individuals who use them. Or perhaps it has to do
63


with the individuals abilities to reframe their illness experiences to fit apparently
useful ideologies behind particular types of CAM.
Survey data from numerous studies indicate that people initially use CAM
to address a particular condition, such as a chronic illness, which conventional
medicine has not dealt with to their satisfaction, rather than due to an ideological
commitment to methods of treatment or communication inherent in CAM
(Sharma, 1994). In the same vein, OConnor states the following (1995 p. 27,
emphasis in original):
When used concurrently, the different systems to which ah
individual has recourse may be selected because each is believed to
deal well with specific features of the health problem..-.This type
of usage reflects a common characteristic of [unconventional]
health belief systems, many of which view conventional medicine
as addressing only symptoms or treating proximate causes of
sickness, while the [unconventional] system is equipped to deal
with critical ultimate causes. Some systems, such as homeopathy
and naturopathy, view disease processes themselves as symptoms,
expressive of but not identical with the actual underlying
problem.. .[an unconventional] system may be experienced as the
system actively promoting the healing, with conventional medicine
added for diagnostic confirmation or mechanical repairs, or used
(by virtue of its many quantifiable tests) as a measuring instrument
by which to chart the progress and efficacy of the primary
([conventional]) therapeutic modality.
OConnor uses the term order of resort to describe this process, and to
replace hierarchy of resort, the term used previously by Romanucci-Ross
(1969). OConnor points out that the term hierarchy of resort may not be the
most accurate way of describing how health care selection processes take place,
64


since it implies replacement of prior options and an upward progression toward
increasingly superior options. This is not always the case, as some options are
used in conjunction with prior options. In addition, the judgment of whether an
option is superior is a subjective one. For instance, conventional cancer treatment
may be accessed before others, or at any other time during the cancer experience.
OConnor suggests, instead, the term order of resort, as it denotes a simple
chronology in the selection of therapeutic modalities, and removes the
implications both of serial replacements and of upward mobility through the
therapeutic ranks (1995, p. 27). Ultimately^ the result of additive health care
selection, according to OConnor, is a broader response to the health problem than
would have been possible by the use of conventional methods alone.
Conventional western medicine does not tend to address personal
experiences of distress and suffering (Kleinman, 1988). As mentioned above, we
know that a cancer diagnosis brings with it distress on multiple levels of
experience: physical, psychological, spiritual, social, and emotional. Eliciting and
understanding such experiences often requires more time than biomedical
practitioners have available to them. It is not uncommon for conventional medical
doctors to offer conventional drugs very quickly and downplay patient complaints
that are not perceived as being of a serious nature, such as the mild depression
that some individuals experience during various phases of cancer treatment and
recovery. Under these circumstances, it is understandable that cancer patients
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would access others forms of therapy available to them that would fill in the gaps,
and allow more time for explanation and discussion. We know from the research
of medical anthropologists that people in medically pluralistic societies use non-
biomedical medical systems to deal with chronic health problems that
conventional medical drugs cannot easily alleviate (Janes, 1999; McGuire, 1988).
Sharma (1994), although writing about conditions within the British
medical system, makes points that are germane to the case of the medical system
in the U.S. One of those points is that, while spending time with and
demonstrating compassion to the patient are considered a part of good
conventional medical practice, many conventional doctors work in conditions
where they can not give much of either (p. 82). Most conventional doctors tend to
work within the confines of medical bureaucracies and the responsibilities
inherent in those contexts, which requires a delicate balance between the
principles of clinical autonomy, the primacy of the patients interests, and his
responsibility to his employers. Sharma explores differences in the equation of
responsibility between conventional practitioners and practitioners of CAM,
suggesting that the difference in the contexts within which they practice changes
the balance of this equation. Most CAM practitioners adhere to activities and
interventions that are in some way holistic, meaning that the patients symptoms
are treated as part of a total health profile, which is based on a wide range of
information about the patient, including the patients personal circumstances and
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- feelings. Although many conventional practitioners may also aspire to provide a
certain level of holistic healing* research has demonstrated that they spend much
less time on the process of examination and history-taking than do CAM
practitioners (p. 87).
Most CAM practitioners, according to Sharma (1994), are self-employed
and, thus, have much more freedom to decide how much time they will spend on
such activities with their patients than do conventional doctors working within
bureaucratic contexts which keep them accountable for their standards of care (p.
92). Sharma makes the point that while some CAM practitioners do work in
group practices, those settings tend to be largely non-hierarchical, with minimum
direct control from either superiors or equals. Her key point is that, in some
important respects the medical encounter in complementary medicine is bound to
be different from that which obtains in orthodox medicine, and for reasons which
are only partly to do with therapeutic ideologies and much to do with the
institutional environment (p. 97). The balance of the relationship, therefore,
between the patient and practitioner hinges on different things, and is
characterized by a different configuration of responsibility.
Another important point that Sharma (1994) makes is that much of CAM
is sold to a private market, wherein the person who uses it is both patient and
consumer. This consumer-provider relationship has implications for the equation
of responsibility. In such a market context, the customer is in control of his or her
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own health and has the freedom to leave the CAM therapist to pursue other
therapeutic avenues* if desired. The CAM practitioner exchanges some control
over the patient for the freedom to control his or her own activities as a healer. As
part of a bureaucratic system, the conventional doctor gives up that kind of
professional freedom and gains greater control of the patient by having access to a
large referral system, which acts like a safety net when the patients problems go
beyond the knowledge and expertise of the doctor.
The extensive use of CAM in the U.S. and throughout the industrialized
world challenges the biomedicial professions long-held assumption that our
societys health care is defined by a single biomedical system. According to
Kaptchuk and Eisenberg (2001a), although the medical community has, until
recently, attempted to ignore or suppress unconventional healing practices, the
popularity of unconventional medicine together with changes in the internal
orientation of the biomedical community has yielded a new dialogue. This
transformation is due to:
.. .an awareness in biomedicine that its institutions (for example,
the AMA, medical schools, the pharmaceutical industry, and the
National Institutes of Health) have a limited ability to set the health
care agenda in the face of a developing consumer-oriented health
care system... This awareness of alternative medicine represents
both a historic continuation of U.S. medical pluralism and a
dramatic reconfiguration away from antagonism and toward a
postmodern acknowledgment of diversity (Kaptchuk & Eisenberg,
2001a, p. 193).
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The fact that so many people, including cancer patients, continue to use
forms of CAM, suggests that, on some level, they work. This touches on the topic
of medical efficacy and what constitutes it. If it refers to well-being on all of the
above-mentioned levels of experience, then biomedicine falls short. If it refers
only to affecting disease pathology, then biomedicine can often claim efficacy,
although it may not deliver what an increasing amount of people are expecting
when they are looking for healing. I£ as some researchers say, the primary
impact of medicine on health is the improvement of quality of life (McKeown,
1980), then it is worth considering the part that CAM might play in this process.
The cultural affirmation of illness is another concept that is relevant to
the understanding of CAM use and its place in Western medical systems. In
Japan, the sense of self-worth of the sick individual is enhanced, while in the
United States patients are depersonalized and isolated (Ohnuki-Tiemey, 1984).
This difference in how patients are dealt with reflects differences in the values and
attitudes toward illness in each of these cultures. The differences in cultural
attitudes toward illness between Japan and the United States are related to the
concept of self in each culture. In Western cultures, the conception of the person
is unique within the context of world cultures: that of a bounded, separate
cognitive entity contrasted against other such entities, as well as his or her social
and natural background (Geertz, 1976, cited in Ohnuki-Tiemey, 1984, p. 213).
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It is not difficult to see that Western ideas about the individual, combined
with the focus of biomedicine on bodily disease rather than illness, have driven
the development of Western medical systems, and influenced the inclusion or
exclusion of certain types of therapy. But the increasing frequency of the use of
CAM may be evidence that there is still a human need for medical approaches
that comprehensively address the various levels of the illness experience (i.e.,
physical, psychological, spiritual and emotional).
In the United States, illness is equated with deviant behavior, and
institutionalized care of the sick is encouraged (Parsons & Fox, 1952, cited in
Ohnuki-Tiemey, 1984). In Japan the psychological support by the family and
others motivates the patient to recover quickly, whereas in the United States,
punishment by institutional-impersonal treatment motivates the sick to become
healthy (Ohnuki-Tiemey, 1984: 215). Ironically, in the United States, the patient
role denies individualism, even though individualism is valued highly within the
culture. Perhaps the place of the patient as a deviant within the society places him
or her on the periphery of normal sociocultural life. As a result, the world of
therapeutic choices available to the patient widens to include the use of peripheral
resources, including alternative forms of therapy. If this is the case, it is not
unreasonable to consider the use of CAM as a way of focusing on self in
recovery, in a culture that has a dominant medical system that focuses on disease.
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It may be a means of integrating psychologically and emotionally supportive
relationships into the illness experience.
McGuire (1988) carried out a study of die use of alternative systems of
health and healing in suburban America. The study focused on the nonmedical
healing groups and healers found in the suburban communities that make up
western Essex County New Jersey, and in surrounding counties in which groups
took place that people from Essex County attended. The groups included in this
geographic area were broken out into the following categories: Christian,
metaphysical, Eastern meditation and human potential, and psychic and occult.
In the McGuire study, most of the members of these groups were initially drawn
to the larger systems of beliefs inherent in the groups, rather than to the health and
illness related beliefs and practices that are part of these systems.
McGuire (1988, P. 6) emphasizes that much alternative healing is not
merely a technique, but entails a complete system of beliefs and practices. What
may draw some people to alternative medical systems is the fact that these
systems do not use the dichotomies so common to modem biomedicine, such as
between practices aimed at curing disease and the meaning-providing aspects of
healing. Western biomedical doctors focus on the cure of disease and are not
prepared to heal illness, while alternative medical systems tend to focus on illness
more than disease.
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McGuire (1988, p. 7) reminds us that it is often overlooked that modem
biomedicine evolved from allopathy, which was once only one perspective within
a heterogeneous set of competing medical perspectives in America. In a sense, it
is not so different now than it was then. She states (p. 9):
It is entirely possible that many middle-class, relatively well-
educated persons were socialized into a set of medical conceptions
that are neither officially acceptable nor internally consistent: a
curious mixture of elements of folk beliefs, religious explanations,
partiidly understood scientific and medical explanations,
superstition, recipe-knowledge for everyday situations, mass media
caricatures, and cocktail-party versions of pop therapeutic
concepts.
She urges us to keep in mind that alternative healers are just some of the
many resources that middle-class individuals use for health and healing. Most of
her interviewees believed that doctors were limited in their healing capacities, and
stated that they saw alternative healing practices as a necessary adjunct to
conventional medicine (p. 161). McGuire asserts that, although the AMA has
portrayed the situation differently, very little of alternative healing directly
conflicts with conventional medical practices (p. 15).
Another important point that McGuire (1988, p. 16) makes is that
[alternative] healing movements may be related to a new mode of individualism,
a new form of connection between the individual and society through self-
transformation and new world images, which include such concepts as holism and
different ideas about moral responsibility. McGuire (p. 6) states that:
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... many studies of marginal medicine in Western societies have
assumed that these systems of belief and practice are characteristic
of the lower classes and poorly educated people, that they are
basically vestiges of earlier folk healing practices, and that they are
likely to wane as education and socioeconomic levels in the society
increase.
On the contraiy, it is McGuires contention that this is a middle-class
phenomenon precisely because it is middle-class individuals who have the time,
opportunity, and resources to assert themselves against the rationalization of
contemporary Western culture.
According to McGuire (1988, p. 245); a certain type of world image was
instrumental to the development and maintenance of early capitalisma model of
social structure and socioeconomics that necessitated a focus on the material
world and the legitimated self. She emphasizes that world image and the
legitimized self have been rationalized to be congruent with the capitalist
socioeconomic system, and middle-class existence may be conducive to the
proliferation of this type of world image. To extend this further, she argues that
people may no longer be willing to adhere to the forms of rationalized bodily and
emotional experience and expression that modem societies have proliferated, and
the use of alternative healing systems, as part of larger alternative belief systems,
may be an attempt to confront this rationalization and create new world images.
In her words (p. 255):
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Successful forms of identity during industrialization were based on
the internalization of authoritatively defined values. Such forms
were appropriate to the rationalized economic sphere, partly
because successful socialization into these forms produced
anonymous; self-responsible individuals who bould fit the
bureaucracy. Individuals internalized specific values, such as
perseverance, dependability, consistency, integrity, and duty, that
were suited to the rationalized economic sphere.
Summary
This chapter provided a synopsis of the literature related to the use of
CAM by cancer survivors, including the literature on stress and coping,
reconceptualization of the cancer experience, medical pluralism, the globalization
of medicine, and the sociocultural context of illness and CAM use. While there is
an extensive and growing body of research on the use of CAM, including those
typically used by cancer patients, there remain gaps in the literature regarding the
subjective experiences of those who have chosen to use them. The goal of this
study was to let breast cancer survivors who have made the decision to use CAM,
and who have experienced the results of their decision, talk about their
experiences, and thereby enhance existing knowledge regarding the needs of
individuals living through the cancer experience.
The importance of recognizing and controlling both the physical and
psychosocial dimensions of the cancer experience, and of dealing with the
symptoms/problems inherent in those dimensions, has been established in the
literature. Cancer patients experience a great deal of psychosocial distress, as
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well as physical symptoms. The Transactional Model of Stress and Coping is
useful for understanding how individuals deal with stressful events and
experiences through their perceptions regarding risk and the use of different types
and styles of coping. The results of effective coping behavior can be the
containment of uncomfortable feelings, establishing a sense of control, and the
improvement of quality of life. CT use may be a part of this process.
One way in which individuals cope with a serious illness is through the
reconceptualization of the illness experience through changed beliefs and the
development of personal meanings. This coping process, as well as all others,
takes place within a sociocultural context that plays a role in how people
experience illness, and in the availability of resources for coping with it. Within
pluralistic medical systems, people have access to healing resources, not only
through the dominant medical system, but also through nonconventional healing
systems and practices. The globalization of medicine increasingly plays a role in
the additional healing modalities that are available to people in modem,
industrialized nations.
The purpose of this study is not to prove or disprove any of the theoretical
perspectives mentioned above; however, the concepts inherent in them have
informed the design of the study. Indeed, it is the literature in these areas that has
generated questions that inspired this research. The studies mentioned above all
add to our understanding of the widespread use of CAM, but they do not fully
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explain individuals experiences using CAM. There are still many questions to be
answered. If the use of CAM is an example of active coping, do the reasons for,
and expectations o£ such use match what the user gets out of the experience?
Expectations are important, because they are part of the cognitive processes that
influence motivation and, hence, behavior. What are the influences and routes of
knowledge that lead to the choice to use CAM? If certain philosophical
orientations to health and illness are associated with the use of CAM, where and
when do those philosophical orientations originate? Are they present before a
person is diagnosed with cancer or do they somehow evolve as a result of the
persons experience with cancer? These questions have not yet been fully
addressed. The results of this study can be used to help answer them.
McGuire shows us that even the most difficult to understand healing
beliefs and practices provide very important functions for their adherents:
meaning, order, and a sense of personal empowerment in the face of upsetting or
even traumatic experiences in life (1988, p. 14). This finding is congruent with
Antonovskys sense of coherence concept, the main components of which are
comprehensibility, manageability, and meaningfulness. Kleinman seems to be
talking about the same phenomenon when he states that, Constructing illness
from disease is a central function of health care systems (a coping function) and
the first stage of healing. That is, illness contains responses to disease which
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attempt to provide it with a meaningful form and explanation as well as control
(1980, p. 72).
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CHAPTER 4
METHODS
The Grounded Theory Method
A modified grounded theory approach to data collection and analysis was
used in this study. The grounded theory method was chosen in order to allow for
the systematic building of theory, and because of its strength in allowing the
concepts and categories inherent in the data to emerge and be clarified by the
study participants themselves, rather than imposing preconceptions on the data.
One of the co-originators of the grounded theory method describes it in the
following way (Glaser, 1992, p. 16):
The grounded theory approach is a general methodology of
analysis linked with data collection that uses a systematically
applied set of methods to generate an inductive theory about a
substantive area. The research product constitutes a theoretical
formulation or integrated set of conceptual hypotheses about the
substantive area under study.
Grounded theory is one of the methods often used by those who take the
epistemological position of constructivism. It is a method that has philosophical
roots in phenomenology, in that it seeks to identify the core social psychological
and/or social structural process within a given social context (Crabtree & Miller,
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1992). Grounded theory is founded on the principles of symbolic interactionism,
a theoretical orientation based on three premises: 1) human beings act toward
things based on the meanings that those things have for them, 2) meanings derive
from social interaction, and 3) these meanings are handled and modified through,
an interpretative process used by the person in dealing with the things that are
encountered (Blumer, 1969, p. 2). In other words, individuals interpret each
others actions and react to the meaning they have attached to those actions, rather
then merely reacting to each others actions. Meanings, then, are social products
formed in and through social interaction (p. 5).
In addition to a focus on socially constructed meanings, symbolic
interatiohists emphasize the important role language plays in thought and the
negotiation of meaning in human interaction. In turn, thought modifies each
individuals interpretation of what is encountered. This theoretical perspective
focuses on the subjective aspects of social life, rather than on the influences of
social systems for the purpose of understanding human behavior. While social
interactionists view individuals as active participants in the construction of their
reality and social world, they also recognize that the meanings that individuals
give to people and things do not emerge in and of themselves. They are strongly
influenced by cultural factors.
When Glaser and Strauss (1967) first introduced the grounded theory
approach they described the process as one through which theory is discovered,
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the idea being that theory emerges from the data as it is analyzed. The goal is to
build or conceptualize theory as data are collected, categorized, coded, and
compared for similarities and differences. According to Strauss and Corbin, who
later expanded the method, Theory consists ofplausible relationships proposed
among concepts and sets of concepts (1998b, p. 168, emphasis in original).
To say that a theory is grounded means that it is generated by (or
grounded in) an iterative process involving the continual sampling and analysis of
qualitative data gathered from concrete settings, such as unstructured data
obtained from interviews, participant observation and archival research
(PidgeOn, 1996, p. 76). In general terms, the grounded theory approach is a
method for the systematic analysis of unstructured qualitative data (p. 79,
emphasis in original), and shares the following with the qualitative paradigm
(p.80):
1. An emphasis on the importance of considering the meaning of
experience and behavior in context and in its full complexity
2. A view of the scientific process as generating working
hypotheses, rather than immutable empirical facts
3. An attitude towards theorizing that emphasizes the grounding of
concepts in data, rather than beginning with a priori theory that is
imposed on the data
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A viable grounded theory will meet four central criteria: fit, work,
relevance, and modifiability (Glaser, 1992, p. IS). If a grounded theory is
carefully induced, its categories and their properties (conceptual characteristics of
categories) will fit the realities of the phenomenon under study in the eyes of
study subjects, practitioners and researchers in the area. A grounded theory that
works explains the major variations, in behavior in the area under study in terms of
the main concerns of the study subjects. If a grounded theory both fits and works,
it has relevance. Finally, a grounded theory should be modifiable when new data
necessitate integration of new categories and properties. A well constructed
grounded theory should also meet two major criteria of scientific inducted theory:
it should have scope and be parsimonious. That is to say, it should account for as
much variation of behavior in the action scene as possible, with as few categories
and properties as possible (Glaser, 1992).
The goal of the grounded theory method is to discover the elements of
theory, rather than test it. The aim is to generate a theory grounded in the data
that accounts for what is going on in the situation of interest. Such a theory,
according to Glaser, should be implicit in the data. In grounded theory, both the
theory and the exact specifics of the method are emergent and develop gradually
as data and interpretations accumulate. For instance, interview questions can be
changed or added to for the purpose of acquiring data that will increase the depth
and breadth of the emerging theory. It is essential that the method be responsive
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to the data by allowing for flexibility of data collection, coding, and hypothesis
building.
The grounded theory method of data analysis has been referred to as the
constant comparative method, due to the fact that one of its primary aspects is
constant comparative analysis, a style of analysis in which data are analyzed they
are collected. Constant comparison is the core process of the grounded theory
method. It begins as soon as data collection starts, and continues throughout the
course of data collection and analysis. The results of constant comparison are
documented in notes and theoretical memos. Coding identifies the components of
the emerging theory, while memos are created to record hypotheses the researcher
has about a category or property, or relationships between categories. This
iterative process of data collection and analysis characterizes qualitative research
as a whole, but it is a particularly important aspect of grounded theory
methodology. Through this process, emerging theory is continually matched
against the data, as it is collected and categorized (Strauss & Corbin, 1998b, p.
159). The goal of this process is conceptual integration.
Near simultaneous data collection and analysis allows preliminary
analyses to be considered and used to guide successive data collection. This
strategy is important for maximizing the depth and breadth of information and for
the development of a comprehensive theory. The constant comparative method
occurs in four stages (Glaser & Strauss, 1967):
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1.. Comparing incidents applicable to each category. Analysis starts by
coding each data incident into as many categories of analysis as possible,
as categories emerge or as data emerge that fit into an existing category.
2. Integrating categories and their properties. As the coding continues,
the constant comparative units change from comparison of incident with
incident to comparison of each incident with properties (conceptual
characteristics) of the category that resulted from initial comparison of
individual incidents.
3. Delimiting the theory. Delimiting occurs at both the level of the theory
and the level of the categories. As the theory solidifies (i.e., modifications
become fewer and fewer as incidents of a category are compared to its
properties) modifications focus mainly on the clarification of the logic,
taking out non-relevant properties of categories, integrating details of
properties into an outline of interrelated categories, and reduction
(developing a smaller set of higher level concepts based on underlying
uniformities in the original set of categories).
4. Writing theory. This process involves collating the memos written
about each category, validating the memos against the coded data if
necessary, and using the memo content to create the major themes of the
theory.
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The grounded theory method uses a purposive sampling technique called
theoretical sampling, which includes finding examples of a theoretical construct
and thereby elaborating and examining it (Kuzel, in Crabtree & Miller, 1992,
p.38). It involves the active sampling of new cases as analysis proceeds. In fact,
this dynamic relationship (constant comparison combined with theoretical
sampling) between data analysis and data collection is a hallmark of the grounded
theory approach. As Pidgeon (1996, in Richardson, p. 78) states, Since the goal
of grounded theory is the elaboration of a conceptually rich, dense and
contextually grounded account, there is no compunction to sample multiple cases
where this would not extend or modify the emerging theory. Accordingly,
sampling is often explicitly driven by theoretical concerns, with new cases being
selected for their potential for generating new theory by extending or deepening
the researcher's emergent understanding.
The grounded theory approach can be used to build either substantive or
formal theory (Glaser & Strauss, 1967). Substantive theory is theory that is
developed for a substantive, or empirical, area of research, such as pain
management, spiritual counseling or, in the case of this study, coping with breast
cancer. Formal theory refers to theory that is developed for a formal area of
research, such as coping in general, or decision making. The goal for this study is
to contribute to the development of substantive theory regarding the use of CAM
by breast cancer survivors.
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Although the goal of the grounded theory method is to generate theory
grounded in the data, it is important to acknowledge that the researcher does not
enter the research process completely free of preconceptions, perspectives, or
theoretical viewpoints that sensitize him or her to certain aspects of the data.
A Modified Grounded Theory Approach
There are several reasons that this study does not follow a pure
grounded theory approach. First, in order to follow grounded theory methods
strictly, it is best to approach a grounded qualitative study with as little prior
reading as possible in the specific area under study, in order to limit the likelihood
of beginning data analysis with preconceived theoretical concepts from the extant
literature. For a graduate student this is impractical, given that throughout a
graduate program, one is intently looking at various bodies of literature for
research ideas. There is a considerable body of extant literature on the subject of
CAM use in general and, within that, a body of literature on the use of CAM by
cancer patients, so it was appropriate and useful to review that literature before
embarking on a study that aimed to see how CAM use by breast cancer patients
may differ from other types of CAM use. In a grounded theory study, literature is
accessed as it becomes relevant. By adhering to the process of constant
comparison, newly accessed literature is compared to the emerging theory in the
same way that other data are compared. Although a range of literature on topics
85