UBC Theses and Dissertations

UBC Theses Logo

UBC Theses and Dissertations

The relationship of belief in control and commitment to life to cancer patients' inclination to use unproven.. 1990

You don't seem to have a PDF reader installed, try download the pdf

Item Metadata

Download

Media
UBC_1990_A5_7 S54.pdf [ 5.27MB ]
UBC_1990_A5_7 S54.pdf
Metadata
JSON: 1.0098041.json
JSON-LD: 1.0098041+ld.json
RDF/XML (Pretty): 1.0098041.xml
RDF/JSON: 1.0098041+rdf.json
Turtle: 1.0098041+rdf-turtle.txt
N-Triples: 1.0098041+rdf-ntriples.txt
Citation
1.0098041.ris

Full Text

THE RELATIONSHIP OF BELIEF IN CONTROL AND COMMITMENT TO LIFE TO CANCER PATIENTS' INCLINATION TO USE UNPROVEN CANCER THERAPIES By BARBARA JEAN SKINN B.Sc.N., University of Western Ontario, 1983 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING i n THE FACULTY OF GRADUATE STUDIES The School of Nursing We accept t h i s thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA March 1990 © Barbara Jean Skinn, 1990 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department The University of British Columbia Vancouver, Canada DE-6 (2/88) A b s t r a c t The purpose of t h i s study was t o e x p l o r e the r e l a t i o n s h i p o f b e l i e f i n c o n t r o l and commitment t o l i f e t o the a d u l t cancer p a t i e n t ' s i n c l i n a t i o n t o use unproven cancer t h e r a p i e s . A convenience sample of 40 l u n g cancer p a t i e n t s completed the W a l l s t o n ' s M u l t i d i m e n s i o n a l H e a l t h Locus of C o n t r o l S c a l e , Crumbaugh's Purpose i n L i f e S c a l e , H i r a t z k a ' s A l t e r n a t i v e Therapy S c a l e , and a p a t i e n t i n f o r m a t i o n s h e e t . The m a j o r i t y o f p a r t i c i p a n t s e x h i b i t e d a s t r o n g i n t e r n a l l o c u s o f c o n t r o l o r i e n t a t i o n and a s t r o n g commitment t o l i f e . B e l i e f i n c o n t r o l , commitment t o l i f e , and the degree of i n c l i n a t i o n t o use unproven cancer t h e r a p i e s were not s i g n i f i c a n t l y a s s o c i a t e d . However, age was n e g a t i v e l y c o r r e l a t e d w i t h i n c l i n a t i o n t o use unproven cancer t h e r a p i e s . The m a j o r i t y o f p a r t i c i p a n t s had heard of f i v e o r more unproven cancer remedies, and e x h i b i t e d a s t r o n g i n c l i n a t i o n t o use these unorthodox t h e r a p i e s . The most f r e q u e n t l y used unproven t h e r a p i e s were a n t i - m edicines - imagery, f a i t h - h e a l i n g , megadose v i t a m i n s , and taheebo. The r i s i n g p o p u l a r i t y o f these a n t i - m e d i c i n e s has been r e p o r t e d i n the l i t e r a t u r e . The f i n d i n g s were d i s c u s s e d i n r e l a t i o n to t h e o r e t i c a l expectations, other research studies, and the methodological problems inherent i n the study. Implications of the findings f o r nursing p r a c t i c e , theory, and education were suggested. Recommendations f o r further nursing research were made. XV Table of Contents Abstract i i Table of Contents i v L i s t of Tables v i i L i s t of Figures v i i i Acknowledgements i x CHAPTER ONE: Introduction Background 1 Statement of the Problem 3 Purpose of the study 4 Significance of the Study 4 Conceptual Framework 5 Cognitive Appraisal 7 Coping Strategies 10 Adaptational Outcomes 10 Reappraisal 11 Summary 11 Research Objectives/Hypotheses 11 D e f i n i t i o n of Terms 12 Assumptions 14 Limitations 15 Overview of the Thesis Content 15 CHAPTER TWO: Review of Selected L i t e r a t u r e Introduction 17 Person Factors that may Influence I n c l i n a t i o n to Use Unproven Cancer Therapies 17 B e l i e f i n Control 18 Commitment to L i f e 24 Unproven Cancer Therapies 28 Summary of L i t e r a t u r e Review 36 CHAPTER THREE: Methodology Introduction 38 Research Design 38 Sampling Procedure 38 V Data C o l l e c t i o n Instruments 41 Wallston's Multidimensional Health Locus of Control Scale 41 Crumbaugh's Purpose i n L i f e Scale 44 Hiratzka's Adapted Al t e r n a t i v e v Therapy Scale 45 Patient Information Sheet 47 Medical Records 47 Procedure f o r Data C o l l e c t i o n 48 P i l o t Test 49 Consent and Human Rights Considerations 49 Data Analysis 51 CHAPTER FOUR: Presentation and Discussion of Results Introduction 53 Cha r a c t e r i s t i c s of the Sample 53 Demographic Ch a r a c t e r i s t i c s of the Sample 53 Health C h a r a c t e r i s t i c s of the Sample 54 Intent of Treatment(s) 56 Findings 57 Awareness of and I n c l i n a t i o n to Use Unproven Cancer Therapies 58 Awareness of Unproven Cancer Therapies 58 In c l i n a t i o n to Use Unproven Cancer Therapies 59 Be l i e f i n Control 64 Hypothesis 1: The cancer patient's degree of i n c l i n a t i o n to use unproven cancer therapies i s p o s i t i v e l y associated with an i n t e r n a l of locus of co n t r o l . 66 Commitment to L i f e 67 Hypothesis 2: The cancer patient's degree of i n c l i n a t i o n to use unproven cancer therapies i s p o s i t i v e l y associated with commitment to l i f e . 67 Supplementary Objectives 68 Reasons to Consider or to Use Unproven Cancer Therapies 69 Reasons Not to Consider or Use Unproven Cancer Therapies 70 Cost 70 Sources of Information about Unproven Cancer Therapies 71 A n c i l l a r y Analyses 73 Discussion of the Results 75 Char a c t e r i s t i c s of the Sample 76 Awareness of and I n c l i n a t i o n to Use Unproven Cancer Therapies 77 Awareness of Unproven Cancer Therapies 77 In c l i n a t i o n to Use Unproven Cancer Therapies 80 B e l i e f i n Control 86 The Relationship between B e l i e f i n Control and the Degree of I n c l i n a t i o n to Use Unproven Cancer Therapies 88 Commitment to L i f e 91 The Relationship between Commitment to L i f e and the Degree of I n c l i n a t i o n to Use Unproven Cancer Therapies 93 Supplementary Objectives 94 Types of Unproven Cancer Therapies Inclined to be Used or Used by Cancer Patients 94 Sources of Information about Unproven Cancer Therapies 99 Cost 100 A n c i l l a r y Analyses 101 Summary 103 CHAPTER FIVE: Summary, Conclusions, Implications, and Recommendations Introduction 107 Summary 107 Conclusions 112 Implications for Nursing Practice 113 Implications for Nursing Education 117 Implications for Nursing Research 117 Implications for Nursing Theory 119 REFERENCES 121 APPENDICES A: Wallston's Multidimensional Locus of Control Scale 136 B: Hiratzka's Adapted Alt e r n a t i v e Therapy Scale 138 C: Patient Information Sheet 142 D: Patient Information and Consent Form 144 E: Wallston's Multidimensional Health Locus of Control Scores by Subject 147 V1X L i s t of Tables Table I Age of Study Participants 54 II Time since Diagnosis i n Months 55 III Awareness of Unproven Cancer Therapies Scores 60 IV Awareness of and I n c l i n a t i o n to Use Unproven Cancer Therapies Scores 61 V Summary of Multidimensional Health Locus of Control Scores 65 VI Median, Mean, and Standard Deviation f o r the Multidimensional Health Locus of Control Subscales 65 VII Purpose i n L i f e Scores 68 VIII Sources of Information about Unproven Therapies 72 VX11 L i s t o f F i g u r e s F i g u r e 1 Conceptual framework f o r the study Ac knowledgement s I would l i k e to thank the Canadian Cancer Society for the Maurice Legault Fellowship which provided me with the f i n a n c i a l support that allowed me to pursue my Master of Science i n Nursing degree and to complete t h i s research project. I extend my thanks to the members of my thesis committee, Dr. Ann H i l t o n (chairperson) and Ethel Warbinek for t h e i r patience, encouragement, and guidance throughout my long and strenuous search f o r answers to the research hypotheses and objectives herein. My h e a r t f e l t gratitude and love goes to my roommate, Barb, whose friendship, sense of humour, and patience kept me sane throughout t h i s research project, and even made me laugh when I l o s t my notes, my patience, my s e l f - c o n t r o l , and my perspective. I am also indebted to Wayne and Glen, two of my dearest fr i e n d s , who offered me constant reassurance, support, and advice. Without these three i n d i v i d u a l s , I would have been quite alone and lonely throughout t h i s past year. Many thanks go to Michele Deschamps, and the s t a f f at the Tuesday afternoon chemotherapy and follow-up c l i n i c - Karen, Majehda, Dana, and Tracey. These women offered me encouragement, support, and t h e i r valuable insights into unproven cancer therapies. In addition, many thanks to the s t a f f at the Ottawa Regional Cancer Centre who helped me meet my completion deadline. F i n a l l y , I would l i k e to acknowledge the in d i v i d u a l s who so generously p a r t i c i p a t e d i n t h i s study. 1 CHAPTER ONE Background to the Problem The Canadian Cancer S t a t i s t i c s estimates that 120,000 new cases of cancer, including skin cancer, were registered i n Canada during 1988 (Canadian Cancer Society, 1988). Fortunately, improved diagnostic and reporting techniques, and superior cancer treatment methods have decreased the mortality rate and increased disease-free s u r v i v a l time and/or l i f e expectancy f o r various types of cancers (Canadian Cancer Society, 1988). Yet, despite these modern advances, cancer remains a dreaded disease, associated with invasive treatments, unexpected recurrence, prolonged s u f f e r i n g , and premature death. The emotional impact of a cancer diagnosis prompts some patients to seek out and use unproven cancer therapies (Brown, 1977; Faw, Ballentine, & vanEys, 1977; Burkhalter, 1978; M i l l e r & Howard- Ruben, 1983; Cas s i l e t h , Lusk & Strouse, 1984; Eidinger & Schapira, 1984; Hiratzka, 1985; Smith, 1985; Uretsky & B i r d s a l l , 1986; Brigden, 1987; Noble, 1988). Unproven cancer therapies are defined as "diagnostic and treatment methods which have not been assessed through the standard s c i e n t i f i c process, and 2 fo r which there i s inadequate information on which to judge t h e i r safety and effectiveness" (Evers, 1987, p.2). Several terms such as unorthodox cancer treatments, unconventional cancer therapies, a l t e r n a t i v e therapies, nontraditional cancer methods, and unproven cancer therapies are often used interchangeably. In t h i s t h e s i s , the term unproven cancer therapies w i l l be used. Although many patients who use unproven cancer therapies continue with conventional therapies, some abandon the t r a d i t i o n a l route for an unproven cancer therapy which promises a r e l i a b l e cure (Cassileth et a l . , 1984). In addition to t h i s r i s k , the use of al t e r n a t i v e cancer therapies which include medications, vitamins, d i e t s , psychic surgery, and mechanical devices may r e s u l t i n physical harm, emotional upheaval, f a l s e hope, and substantial economic loss (Brown, 1977; Burkhalter, 1977; Gardner, 1980; Martin, S t o l f i , & Sawyer, 1983; McNaull, 1985; Brigden, 1987). I t i s estimated that two b i l l i o n d o l l a r s are spent annually i n North America on a myriad of unorthodox cancer treatments (Cancer Control Agency of B r i t i s h Columbia, 1987). Several authors have speculated as to why cancer 3 patients are attracted to unconventional therapies. These speculations encompass lack of information about cancer treatment methods, a sense of hopelessness, impatience with and suspicion of the health care system, fear of death, and f r u s t r a t i o n with treatment side e f f e c t s (Brown, 1975; Brown, 1977; Burkhalter, 1978; Patrick, 1981; Noble, 1988). Moreover, the need for control has been i d e n t i f i e d as a possible reason for cancer patients to use or consider using an unproven cancer therapy. As a head nurse i n an ambulatory care cancer c l i n i c , I have watched cancer patients explore, seek out, and d i l i g e n t l y use various unproven cancer therapies. Some of these patients confirmed that the need to co n t r o l t h e i r own destiny compelled them to investigate and u t i l i z e unproven cancer therapies, while others claimed that t h e i r " w i l l to l i v e " was the compelling force. These assertions about factors that seemed to motivate t h e i r use of unproven therapies prompted t h i s research study. Statement of the Problem The anxiety and dread that may be experienced by cancer patients, t h e i r f a m i l i e s , and t h e i r friends create a s i t u a t i o n i n which the assurance of a quick, 4 r e l i a b l e , and painless cure i s d i f f i c u l t to disregard. A l i m i t e d number of studies indicate that many ind i v i d u a l s with a cancer diagnosis are proponents of unproven cancer therapies (Faw et a l . , 1977; C a s s i l e t h et a l . , 1984; Eidinger & Schapira, 1984; Hiratzka, 1985; Mooney, 1987). However, l i t t l e i s known about the factors that may be i n f l u e n t i a l i n t h e i r decision to use these unproven cancer therapies. I t i s not known whether b e l i e f i n cont r o l and commitment to l i f e are variables of importance to cancer patients' i n c l i n a t i o n to use unproven cancer therapies. Purpose of the Study The purpose of t h i s study was to investigate the r e l a t i o n s h i p of b e l i e f i n control and commitment to l i f e to the adult cancer patient's i n c l i n a t i o n to use unproven cancer therapies and to explore other d e s c r i p t i v e information regarding the use of unproven cancer therapies. Significance of the Study Despite the lack of s c i e n t i f i c information, the use of unproven cancer therapies has been considered an acceptable a l t e r n a t i v e by numerous cancer patients and t h e i r families (Faw et a l . , 1977; C a s s i l e t h et 5 a l . , 1984; Eidinger & Schapira, 1984; Hiratzka, 1985; Mooney, 1987; Noble, 1988). This research project aimed to provide some ins i g h t into the factors that influence the cancer patient's propensity toward use of unorthodox treatments. With increased understanding of the person who i s i n c l i n e d to use unproven cancer methods, the nurse w i l l be i n a better p o s i t i o n to f a c i l i t a t e decision-making and provide appropriate patient education and emotional support. In addition, the nurse w i l l be i n a better p o s i t i o n to explain to t h i s "high r i s k " group the dangers inherent i n using c e r t a i n unproven cancer therapies and i n delaying or abandoning conventional treatment i n favour of an unorthodox treatment. Conceptual Framework The conceptual framework used for t h i s study was the cognitive theory of psychological stress and coping constructed by Lazarus and Folkman (1984) (see fig u r e 1). According to t h i s theory, coping arises from cognitive appraisal of the transaction between the person and the environment. As a r e s u l t of appraisal processes, coping strategies are selected from a v a r i e t y of coping options, and then u t i l i z e d , which i n turn influence the adaptational PERSON Commitments Purpose in Life (PIL) Beliefs - about cancer - about control - about God or fate Primary Appraisal (What is at stake?) Irrelevant I I Harm / Loss - • E N V I R O N M E N T Cancer Extent of Cancer Conventional Treatment(s) Time since diagnosis COGNITIVE APPRAISAL Stressful Challenge Secondary Appraisal Coping Options (Inclinations to use unproven cancer therapies) Benign-Positive Threat REAPPRAISAL COPING RESOURCES COPING CONSTRAINTS COPING STRATEGIES (use / non-use of unproven cancer therapies) OUTCOMES - function in work and social living -moral or life satisfaction -somatic health Figure 1: Conceptual Framework for the study: Belief in Control, Commitment to life, and cancer patients' use and / or inclination to use of unproven therapies. Notes: Adapted from Copjng withjhe uncertainties_qfj^reast can (p. 7), by A. Hilton (1987). Doctoral Dissertation, The University of Texas at Austin. Copyright: 1987" A. Hilton 7 outcomes. Reappraisal follows and a l t e r s the o r i g i n a l appraisal. This study examined the r e l a t i o n s h i p between the person factors of b e l i e f i n con t r o l and commitment to l i f e , and the patient's coping option of i n c l i n a t i o n to use unproven cancer therapies. Lazarus and Folkman (1984) define psychological stress as "a p a r t i c u l a r r e l a t i o n s h i p between the person and the environment that i s appraised by the person as taxing or exceeding his or her resources and endangering his or her wellbeing" (p.19). This d e f i n i t i o n s t i p u l a t e s that d i f f e r e n t persons experience d i f f e r e n t types and degrees of psychological s t r e s s . In order to understand these differences, the examination of the process of coping i s e s s e n t i a l . Cognitive Appraisal Cognitive appraisal consists of two components: (1) the evaluation of what i s at stake i n the encounter (primary appraisal); and (2) what coping options are avai l a b l e (secondary appraisal) (Lazarus & Folkman, 1984). Primary appraisal i d e n t i f i e s whether the encounter i s i r r e l e v a n t (the encounter has no implication for the person's wellbeing), 8 benign-positive (outcome i s construed as p o s i t i v e ) , or s t r e s s f u l . Secondary appraisal i s the evaluation of the e f f i c a c y and usefulness of a l l coping options and a v a i l a b l e resources i n order to e f f e c t i v e l y manage the threat or challenge. Personality factors (person factors) and the actual s i t u a t i o n c h a r a c t e r i s t i c s ( s i t u a t i o n factors) influence any appraisal. The person factors of commitments and b e l i e f s determine what i s important fo r well-being i n a given encounter. Commitments define what i s important to a person and thereby d i r e c t the choices made (Lazarus & Folkman, 1984b, p.298). Commitment implies an enduring motivational q u a l i t y , and the very strength of commitment can impel a person toward a course of action that can reduce threat and help sustain coping e f f o r t s i n the face of obstacles. For example, the " w i l l to l i v e " i s often seen as c r i t i c a l for s u r v i v a l i n cases of l i f e - t h r e a t e n i n g i l l n e s s and i s formed by each i n d i v i d u a l ' s p a r t i c u l a r commitments such as family, unfinished work and/or "beating the odds". B e l i e f s are preexisting notions about r e a l i t y which shape a person's perception of his/her environment (Lazarus & Folkman, 1984, p.63). 9 According to Lazarus and Folkman (1984b), general b e l i e f s about personal control have to do with feelings of mastery and confidence — t h e extent to which people assume they can control events and outcomes of importance (p.299). One of the constructs of control which has been researched extensively i s that of locus of co n t r o l . Locus of control i s the or i e n t a t i o n that one has about the o r i g i n of control - i n oneself, others, or chance. The best known formulation i s Rotter's (1966) concept of i n t e r n a l versus external locus of c o n t r o l . An i n t e r n a l locus of control r e f e r s to the b e l i e f that events are contingent upon one's own behaviour, and an external locus of control refers to the b e l i e f that events are not contingent upon one's actions, but upon chance, fate, luck, or powerful others. Rotter (1966) conceived that these general b e l i e f s about co n t r o l have t h e i r greatest influence when the s i t u a t i o n i s ambiguous and novel. Besides ambiguity and novelty, other properties of a s i t u a t i o n such as duration, imminence, p r e d i c t a b i l i t y , and temporal and event uncertainty i n t e r a c t with person factors and consequently, appraisal of harm, threat, or challenge ensues. Coping Strategies Lazarus and Folkman (1984) define coping as "... constantly changing cognitive and behavioural e f f o r t s to manage s p e c i f i c external and/or i n t e r n a l demands that are appraised as taxing or exceeding the resources of the person" (p.142). Coping strategies a r i s e from cognitive appraisal but also depend upon the a v a i l a b i l i t y of coping resources, the constraints that i n h i b i t resource u t i l i z a t i o n , and the degree of experienced threat. Coping strategies may be emotion- focused or problem-focused. Adaptational Outcomes The fundamental consequences of both coping and cognitive appraisal are adaptational outcomes. Lazarus and Folkman (1984b) i d e n t i f y three basic types of outcomes: functioning i n work and s o c i a l l i v i n g i n which the i n d i v i d u a l f u l f i l l s various s o c i a l roles and i s s a t i s f i e d with his or her interpersonal r e l a t i o n s h i p s ; morale or l i f e s a t i s f a c t i o n which refe r s to the i n d i v i d u a l ' s feelings about him/herself and his/her conditions of l i f e ; and somatic health which refe r s to mental and p h y s i c a l health. Reappraisal Reappraisal refers to a changed appraisal based on new information from the environment and/or the person. Reappraisal follows an outcome and i s the basis f o r further coping, thereby generating a c y c l i c a l process. Summary The cognitive theory of psychological stress and coping (Lazarus & Folkman, 1984) proposes that person and s i t u a t i o n factors are antecedents to cognitive appraisal. Appraisals, both primary and secondary, are c r i t i c a l i n determining the e f f e c t of an encounter on a person's well-being. As a r e s u l t of the appraisal processes, coping strategies are selected from a v a r i e t y of coping options and u t i l i z e d . This study explored the r e l a t i o n s h i p between the person factors of b e l i e f i n control and commitment to l i f e , and the patient's coping option of i n c l i n a t i o n to use unproven cancer therapies. Research Objectives/Hypotheses In the proposed study, the main objective was to t e s t the following hypotheses: 1. The cancer patient's degree of i n c l i n a t i o n to use unproven cancer therapies i s p o s i t i v e l y associated w i t h an i n t e r n a l l o c u s o f c o n t r o l . 2. The cancer p a t i e n t ' s degree of i n c l i n a t i o n t o use unproven cancer t h e r a p i e s i s p o s i t i v e l y a s s o c i a t e d w i t h commitment t o l i f e . In a d d i t i o n , the secondary o b j e c t i v e s were t o ; 1. e x p l o r e the reasons why some cancer p a t i e n t s have t r i e d o r have c o n s i d e r e d t r y i n g unproven cancer t h e r a p i e s . 2. To e x p l o r e the reasons why some cancer p a t i e n t s have not t r i e d o r would never c o n s i d e r t r y i n g unproven cancer t h e r a p i e s . 3. To e x p l o r e the p a r t i c i p a n t s ' s o u r c e ( s ) o f i n f o r m a t i o n about unproven cancer t h e r a p i e s . 4. To assess the c o s t o f the unproven cancer t h e r a p y ( i e s ) t h a t have been t r i e d by the p a r t i c i p a n t s . D e f i n i t i o n s of Terms F o r the purpose of t h i s study, the f o l l o w i n g d e f i n i t i o n s were used: Cancer: a group of d i s e a s e s w i t h r e l a t e d c l i n i c a l f e a t u r e s which, i f u n t r e a t e d , r e s u l t i n death. A t the c e l l u l a r l e v e l , cancers are d i s e a s e s o f abnormal c e l l growth, abnormal c e l l f u n c t i o n , and abnormal c e l l d i f f e r e n t i a t i o n . Cancer c e l l s have the a b i l i t y to invade surrounding tissues and metastasize (Caiman & Paul, 1978). B e l i e f i n Control; the o r i e n t a t i o n by which an i n d i v i d u a l assumes he/she can control important events and outcomes occurring i n his/her l i f e space (Rotter, 1966). B e l i e f i n control w i l l be operationalized by Wallston's Multidimensional Health Locus of Control Scale which measures both i n t e r n a l and external locus of control orientations (Wallston et a l . , 197 6) (Appendix A). Internal Locus of Control: the tendency to believe that one can influence the course of events (Rotter, 1966) . External Locus of Control: the tendency to believe that the course of events i s i n the hands of others or c o n t r o l l e d by fate, chance, or surrounding forces (Rotter, 1966). Commitment to L i f e : a sense that l i f e has meaning (Lazarus and Folkman, 1984). Commitment to l i f e w i l l be operationalized by Crumbaugh's Purpose i n L i f e Scale (Crumbaugh, 1968). Conventional Cancer Therapies: surgery; chemotherapy, and radiotherapy administered according to protocols followed by the Cancer Control Agency of B r i t i s h Columbia (CCABC). Unproven Cancer Therapiest treatment methods which have not been assessed through the standard s c i e n t i f i c process, and for which no adequate information e x i s t s on which to judge t h e i r safety and effectiveness (Evers, 1987). Types of unproven cancer therapies w i l l be operationalized by Hiratzka's (1985) Al t e r n a t i v e Therapy Scale. The scale has been adapted to include those unproven cancer therapies which have been i d e n t i f i e d as the most popular and current therapies a v a i l a b l e i n B r i t i s h Columbia (Cancer Control Agency of B r i t i s h Columbia, 1987b) (Appendix B). I n c l i n a t i o n to use unproven cancer therapies; the mental d i s p o s i t i o n toward use of unproven cancer therapies. Dispo s i t i o n implies only the d i r e c t i o n a t t r a c t i o n and not the f i n a l choice (Webster's Dictionary, 1972). I n c l i n a t i o n to use w i l l be operationalized by Hiratzka's A l t e r n a t i v e Therapy Scale (Hiratzka, 1985) (Appendix B). Assumptions 1. The diagnosis of cancer i s appraised as a s t r e s s f u l event by each i n d i v i d u a l . 2. Research subjects w i l l respond to the research q u e s t i o n n a i r e h o n e s t l y and t o the b e s t of t h e i r a b i l i t y . L i m i t a t i o n s 1. The f i n d i n g s o f t h i s study are not g e n e r a l i z a b l e beyond t h i s study's s m a l l , convenience sample. 2. The f i n d i n g s of t h i s study are l i m i t e d t o those p a t i e n t s a t t e n d i n g the l u n g chemotherapy and f o l l o w - up c l i n i c a t the ambulatory c a r e department a t the Cancer C o n t r o l Agency of B r i t i s h Columbia (CCABC) i n Vancouver, B.C. 3. The unproven cancer t h e r a p i e s s e l e c t e d f o r t h i s s tudy may not adequately r e p r e s e n t the e n t i r e l i s t o f the most p o p u l a r and c u r r e n t t h e r a p i e s t h a t are used by c ancer p a t i e n t s i n B r i t i s h Columbia. Overview of the T h e s i s Content T h i s t h e s i s i s comprised of f i v e c h a p t e r s . In Chapter One, the background t o the problem, c o n c e p t u a l framework, purpose, and r e s e a r c h o b j e c t i v e s and hypotheses are p r e s e n t e d . In Chapter Two, a review of s e l e c t e d l i t e r a t u r e i s p r e s e n t e d u s i n g two major s e c t i o n s : the use of unproven cancer t h e r a p i e s , and the person f a c t o r s of b e l i e f i n c o n t r o l and commitment t o l i f e which have been i d e n t i f i e d as v a r i a b l e s t h a t may i n f l u e n c e the degree of i n c l i n a t i o n to use unproven cancer therapies. Chapter Three addresses the research methodology including a de s c r i p t i o n of the research design, data c o l l e c t i o n instruments, data c o l l e c t i o n procedure, e t h i c a l considerations, and s t a t i s t i c a l procedures used i n data analysis. In chapter Four, the d e s c r i p t i o n of the sample, findings, and discussion of the r e s u l t s are presented. The summary, conclusions, implications for nursing p r a c t i c e , education, and theory, and recommendations f o r future research are presented i n Chapter Five. CHAPTER TWO Review of Selected L i t e r a t u r e Introduction The review of the l i t e r a t u r e i s reported using two major sections. The f i r s t section deals with person factors which have been i d e n t i f i e d as variables that may influence i n c l i n a t i o n to use of unproven cancer therapies and has been subdivided into two major sections: b e l i e f i n c o n t r o l and commitment to l i f e . The second section focuses on a discussion of the l i t e r a t u r e pertinent to the use of unproven cancer therapies. Person Factors that may Influence I n c l i n a t i o n to Use Unproven Cancer Therapies Brown (1975) examined the reasons for "cancer quackery's" success, and delineated three c l a s s i f i c a t i o n s for people who seek "the delusions of cancer quackery" (p.24). These c l a s s i f i c a t i o n s were: the miracle seeker, the impatient, and the straw grasper. Brown's l a t e r work (1977) reinforced the reasons that patients embrace these unproven cancer therapies. She contends that fear, f r u s t r a t i o n , and the inadequacy of the health care team i n the p r o v i s i o n of psychological support to cancer patients and t h e i r families lead these patients "into the hands of a quack" (p.104). From s i m i l a r perspectives, Burkhalter (1977, 1978), Lehrer, (1979), L e v i t t , Guralnick, Kagan, & G i l b e r t (1979), Glucksberg (1980), Patrick (1981), Holland (1982), M i l l e r & Howard-Ruben (1984), and Brigden (1987) elaborated on common q u a l i t i e s and types of unproven cancer remedies, and t h e i r a t t r a c t i o n . These authors i d e n t i f i e d many reasons why people may turn to unproven cancer therapies. These reasons included desperation, feelings of hopelessness, skepticism about the standard treatments, anger, impatience, fear of pain and disfigurement, fear of death, and suspiciousness of doctors and drugs. Furthermore, the majority of these authors d i d not advocate or support the use of unproven cancer therapies. B e l i e f i n Control Control can be defined as the b e l i e f that an i n d i v i d u a l has at his/her disposal a response that can influence the aversiveness of an event (Thompson, 1981). Thompson (1981) i d e n t i f i e d a f o u r f o l d typology of co n t r o l : behavioural c o n t r o l , cognitive c o n t r o l , information c o n t r o l , and retrospective 19 c o n t r o l . Behavioural control can a f f e c t the aversiveness of an event by terminating the event, decreasing i t s p r o b a b i l i t y and i n t e n s i t y , or changing i t s duration or timing. Cognitive c o n t r o l , e i t h e r avoidant or nonavoidant, can also mitigate the aversiveness of an event. Information control provides the i n d i v i d u a l with information about an anticipated aversive event, whereas retrospective control a s s i s t s the i n d i v i d u a l i n deciding whether or not the aversive event could have been c o n t r o l l e d , and i f i t can be i n the future. Rotter (1966) o r i g i n a l l y hypothesized the construct of locus of control to describe the o r i e n t a t i o n by which in d i v i d u a l s are able to control the important events occurring i n t h e i r l i f e space. Internal locus of control i n d i v i d u a l s perceive that the event or reinforcement i s contingent upon t h e i r own behaviour while i n d i v i d u a l s with an external locus of control perceive that fate, chance, surrounding forces, or the control of powerful others are responsible f o r the event (Rotter, 1966; Phares, 1973; MacDonald 1971; Lefcourt, 1973; Wallston & Wallston, 1976). Phares (1976) presented evidence that power i s a motivational concept that i s r e l a t e d to the locus of control concept. Power can be understood as a kind of confidence or a b e l i e f i n the e f f i c a c y of one's e f f o r t s , and therefore, "internals seem to enjoy a greater p o t e n t i a l for power" (Phares, 1976, p.71). However, Phares (1976) pointed out that an i n t e r n a l locus of control i s not s u f f i c i e n t to a t t a i n power or influence over the environment. Individuals must be motivated to achieve a given reward, and reasonably confident of the success of t h e i r e f f o r t s . Powerlessness i s the antonym of power. M i l l e r (1983) and Sheppard (1985) defined powerlessness as the perception of an i n d i v i d u a l that his/her own actions w i l l not s i g n i f i c a n t l y a f f e c t an outcome. Powerlessness i s s i t u a t i o n a l l y determined, and i s generated when one or more of the power sources — physical stamina, self-concept, knowledge, energy, motivation and b e l i e f systems — are compromised. Nagy and Wolfe (1983) found that c h r o n i c a l l y i l l p a tients, who experienced repeated contacts with medical care services, exhibited high Chance and high Powerful Other locus of control orientations. Dennis (1987) studied 70 medical-surgical patients i n order to determine i f t h e i r perception of control over impending events helped to mediate stress reactions. She found that the patients developed cognitive control strategies i n order to a s s i s t them i n getting well/going home. These strategies included seeking knowledge and c e n t r a l information about t h e i r i l l n e s s , treatments, and prescribed l i f e s t y l e changes. Jamison and colleagues (1986) studied the psychological impact of cancer on locus of c o n t r o l i n teenagers and found that adolescent cancer patients scored s i g n i f i c a n t l y lower on i n t e r n a l locus of control than t h e i r healthy peers. In another study, Kerber (1987) examined the r e l a t i o n s h i p between locus of control and recent l i f e changes ( i e : recurrence) i n adults with cancer and found that locus of control was not s i g n i f i c a n t l y correlated with disease-free i n t e r v a l . Brockopp, Hayko, Winscott, and Davenport (1988) studied 71 cancer patients' perceptions of personal c o n t r o l i n r e l a t i o n to t h e i r psychosocial needs. The researchers found s t a t i s t i c a l l y s i g n i f i c a n t r e l a t i o n s h i p s between personal control and the adult cancer patients' psychosocial needs for information, honesty, expression of anger, and a discussion of issues r e l a t e d to death and dying. H a l l a l (1982) studied the r e l a t i o n s h i p of health locus of control to the practice of breast s e l f - examination (BSE) as a ea r l y breast cancer detection method (N = 207). Her study found that p r a c t i c i n g BSE was not s i g n i f i c a n t l y correlated with a higher score on the Internal subscale of the Multidimensional Health Locus of Control (MHLC) Scales but that p r a c t i c i n g BSE was negatively c o r r e l a t e d with obtaining a higher score on the Powerful Other subscale. Studies on control have been conducted that concentrated on indivi d u a l s with breast cancer. Dodd (1983) found that health locus of control was not s i g n i f i c a n t as a moderating variable i n measuring s e l f - c a r e behaviours used by breast cancer patients (N=30) to manage the side e f f e c t s of chemotherapy. In contrast, Brandt (1987) found that the locus of control for 31 women receiving chemotherapy for breast cancer indicated a tendency toward e x t e r n a l i t y . Brandt also found a s i g n i f i c a n t c o r r e l a t i o n between hopelessness and external locus of c o n t r o l (r = .37, p < 0.05). Participants who exhibited more external locus of control tended to express greater hopelessness. H i l t o n (1987) studied 227 women with breast cancer and found that most of these women (73.1%) f e l t that they had l i t t l e control over the cause of t h e i r cancer. In addition, 70.5% f e l t they could not have prevented the growth of t h e i r cancer. The majority of the study group did not f e e l that the cause of t h e i r cancer could have been influenced by others. In contrast, 72.2% of the subjects perceived they had considerable control of t h e i r cancer's course and recurrence. Taylor, Lichtman, and Wood (1987) interviewed 78 breast cancer patients and found that 56% f e l t they personally had some degree of control over the course of t h e i r cancer. However, the subjects believed that other factors could influence the course of the disease. Seventy-eight percent of the subjects believed that one of these other factors was the physician or treatments, while 10% believed God was another important factor. These findings i n d i c a t e that the patients see themselves, as well as others, c o n t r o l l i n g t h e i r s i t u a t i o n rather than themselves alone or others alone. Only one study was found i n the l i t e r a t u r e that addressed the r e l a t i o n s h i p between locus of c o n t r o l and self-use of unproven cancer therapies. Hiratzka's (1985) exploratory study was c a r r i e d out to determine i f a r e l a t i o n s h i p existed between health locus of control and adult cancer patients' knowledge and attitudes toward unproven cancer therapies (N = 125). A s i g n i f i c a n t p o s i t i v e c o r r e l a t i o n was found between cancer patients' i n c l i n a t i o n to use unproven cancer therapies and the degree of i n t e r n a l i t y of t h e i r health locus of control (r = 0.24, p = <0.01). In addition, p o s i t i v e c o r r e l a t i o n s were found between the knowledge scores and both Internal (r = 0.30, p = <0.001) and Powerful Other (r = 0.22, p = <0.014) locus of control or i e n t a t i o n s . Commitment to L i f e Crumbaugh (1968) defined purpose i n l i f e as the degree to which an i n d i v i d u a l experiences a sense of meaning. S i m i l a r l y , Lazarus and Folkman (1984b) i d e n t i f i e d that committed persons have a generalized sense of purpose i n l i f e and can i d e n t i f y what i s important and unimportant to t h e i r wellbeing. They asserted that " c l i n i c i a n s often dealing with people i n health c r i s e s often use the expression v w i l l to l i v e ' to r e f e r to what we c a l l a commitment" (p.298). Many popular books about the cancer experience focus on purpose i n l i f e . Dosdall (1986), a cancer patient and author, wrote that having something to l i v e f o r keeps a person "on track" or involved with l i f e . His own personal experience taught him the value of s e t t i n g goals, planning for the future, and the power of the mind over the body. Simonton and colleagues (1974), who are renowned for t h e i r s e l f - awareness techniques to help cancer patients cope with cancer, were fascinated by the discovery that "the cancer patients who continued to do wel l , for one reason or another, had a stronger " w i l l to l i v e " " (p.5). They pointed out that the w i l l to l i v e i s stronger when there i s something to l i v e f o r . Furthermore, they contended that goal s e t t i n g helps patients focus on t h e i r reasons f o r l i v i n g and reestablishes t h e i r connection with l i f e . Cousins (1979) maintained that the w i l l to l i v e was a phy s i o l o g i c a l r e a l i t y with therapeutic c h a r a c t e r i s t i c s . Cousins wrote that "there i s always a margin within which l i f e can be l i v e d with meaning and even with a c e r t a i n measure of joy, despite i l l n e s s " (p.203). From a physician's perspective, Siegel (1986) recorded many experiences of exceptional cancer patients who sustained a w i l l to l i v e and achieved t h e i r personal goals. Although various publications describe the purpose i n l i f e of i n d i v i d u a l cancer patients, l i t t l e s c i e n t i f i c research has s p e c i f i c a l l y investigated purpose i n l i f e i n people with cancer. M i l l e r and Nygren (1978) compared the coping strategies of 10 cancer patients before and a f t e r they attended a structured educational program t i t l e d "Learning to l i v e with cancer". They found that focusing on the p o s i t i v e aspects of l i f e and rethinking the reasons for l i v i n g were two strategies u t i l i z e d both before and a f t e r the classroom sessions. Lewis (1982) found that higher l e v e l s of personal control were s i g n i f i c a n t l y associated with more purpose i n l i f e and meaningfulness (N = 57). She also found that the re l a t i o n s h i p between time since diagnosis and purpose i n l i f e was not s t a t i s t i c a l l y s i g n i f i c a n t . A desc r i p t i v e study by Kesselring and colleagues (1985) reported that 9 Swiss cancer patients (N = 45) had few expectations for l i f e / f u t u r e , whereas 21 were accepting of the diagnosis and aware of future p o s s i b i l i t i e s . In contrast to t h i s study, Dodd and colleagues (1985) found that a l l 40 Egyptian study p a r t i c i p a n t s perceived that the meaning of having cancer was uniformly bleak ( i e : s u f f e r i n g , hopelessness, death). Another study by Thorne (1985) of eight Canadian families reported that a major key to success at minimizing cancer's impact on future o r i e n t a t i o n was to plan for the future. H i l t o n (1987) examined how women with breast cancer (N=227) perceived t h e i r purpose i n l i f e and found that 65.2% had d e f i n i t e purpose and meaning i n l i f e ; 27.8% were i n the indecisive range; and 5.7% lacked c l e a r meaning and purpose. She also found that the subjects i n her study used more Making Self/Things Better as a coping strategy i f they had higher purpose i n l i f e . This strategy included a c t i v i t i e s such as exercise, prayer, problem analysis, and rediscovering what i s important i n l i f e . Owen (1989), i n a q u a l i t a t i v e study on nurses' perceptions on the meaning of hope i n patients with cancer, concluded that meaning i n l i f e or commitment to l i f e may be one of the precursors to f e e l i n g hopeful. The s i x c l i n i c a l nurse s p e c i a l i s t s , who were interviewed by Owen, believed that commitment to l i f e was one of the s i x elements or subthemes i n a conceptual model of hope. The other f i v e subthemes were: energy, peace, personal a t t r i b u t e s , future r e d e f i n i t i o n , and attainable goals. Unproven Cancer Therapies Janssen (1979), and M i l l e r and Howard-Ruben (1983) reviewed the h i s t o r y of cancer quackery and the major unorthodox remedies: Koch's treatment, Harry Hoxsey's herbal to n i c , krebiozen, and l a e t r i l e . The therapeutic e f f e c t s of the above treatments were explored i n these a r t i c l e s , and each treatment was exposed as a "health hoax" (Janssen, 1979, p. 528). For example, s c i e n t i f i c analysis of Koch's treatment showed i t to be d i s t i l l e d water of extraordinary- p u r i t y — i t contained one part of i t s alleged active ingredient, the chemical glyoxylide, and one t r i l l i o n parts of water. I t was pointed out that even though there was no evidence that Koch's treatment had any therapeutic e f f e c t , over three thousand health p r a c t i t i o n e r s had promoted i t s use during the 1940's. Koch's treatment i s currently i l l e g a l i n both Canada and the United States but can be obtained i n Mexico and through some underground h o l i s t i c p r a c t i t i o n e r s ( M i l l e r & Howard-Ruben, 1983). M i l l e r and Howard-Ruben (1983) l i s t e d over one hundred d i f f e r e n t v a r i e t i e s of unorthodox cancer treatments that have been or are current l y a v a i l a b l e . In 1984 they published a second a r t i c l e that explored the current trends i n unproven cancer therapies and the implications for patient care. These current trends include Simonton's psychotherapy, immuno-augmentative cancer therapy (IAT), and dimethyl sulfoxide (DMSO). I t i s i n t e r e s t i n g to note that L a e t r i l e was c i t e d as the most commonly known and consistently marketed unorthodox medication. There i s a long h i s t o r y of adversity and controversy i n the area of unproven cancer therapies (Brown, 1975; Gardner, 1980; Glymour & Stalker, 1983; Behney, 1987). An excellent i l l u s t r a t i o n of the controversy that surrounds the use of unproven cancer therapies was provided by Siegal's (1986) account of the l e g a l i z a t i o n of L a e t r i l e i n the United States. L a e t r i l e was l e g a l i z e d i n twenty-seven states as a r e s u l t of public pressure that persuaded the l e g i s l a t o r s to disregard the tenacious opposition of the medical profession, and the Food and Drug Administration (Siegal, 1986). Public pressure also prompted the National Cancer I n s t i t u t e (NCI) to i n i t i a t e a c l i n i c a l t r i a l designed to study the effectiveness of L a e t r i l e . I n i t i a l l y , NCI refused to conduct a study of L a e t r i l e because i t was viewed as unethical to administer "an almost c e r t a i n l y useless drug" to cancer patients when drugs that had been proven to be useful were available (Siegal, 1986, p.82). The NCI study concluded that L a e t r i l e i s a to x i c , cyanide-laden drug which i s not e f f e c t i v e as a cancer treatment (Martin, 1977; Inglefinger, 1977; American Cancer society, 1977; Siegal, 1986). Despite these research findings, the public continues to p e t i t i o n f or the l e g a l i z a t i o n of L a e t r i l e throughout Canada and the United States. Many authors, health care professionals, and the general public disagree about the c l a s s i f i c a t i o n of treatments as e f f e c t i v e or i n e f f e c t i v e , and about who has the r i g h t to determine the r i s k s and benefits of av a i l a b l e therapies (Gardner, 1980; Salsbury & Johnson, 1981; Ca s s e l i t h , 1982; L i s t e r , 1983; Martin et a l . , 1983; Pi t a r d , 1985; Oldham, 1985; "Rights of Patients", 1985; "Presidential I n i t i a t i v e " , 1986; J a r v i s , 1986; Rogers, 1987). "Presidential I n i t i a t i v e "(1986), reported that "...by what l e g a l or moral r i g h t do we abide a system that t e l l s huge numbers of gravely i l l Americans they cannot t r y these [new medical] therapies u n t i l a bunch of people [Food and Drug Administration] say so?" (p.6). Rogers (1987) wrote that "cancer patients f o r whom the conventional therapies have been exhausted have the r i g h t to seek unconventional treatment as the l a s t r e s o r t " (p.406). In contrast to these views, Martin and colleagues (1983), Siegal (1986), and J a r v i s (1986) presented several f a l l a c i e s that surround the use of a l t e r n a t i v e cancer therapies, and concluded that these treatments must not be made ava i l a b l e to the public u n t i l t h e i r effectiveness i s s c i e n t i f i c a l l y proven. Salsbury and Johnson (1981) summarized the two major c o n f l i c t i n g views regarding the use of unproven cancer therapies. They explained that "Group One" i s fundamentally opposed to these therapies and supports the standard and experimental treatments that are offered by the NCI, the American and Canadian Cancer S o c i e t i e s , and the major cancer centres. "Group two" supports treatments that are nontoxic and "natural", and consider the standard cancer treatments t o x i c . This group i s represented by such organizations as the International Association of Cancer V i c t o r s and Friends, and the Cancer Control Society. In addition to these two views, Salsbury and Johnson (1986) delineated that there i s also a gray area: an overlap of the approaches favoured by the two groups. The gray area i s the r e s u l t of several treatment components being accepted by both groups but used i n d i f f e r e n t ways. The authors described the difference as responsible versus ir r e s p o n s i b l e use, and they u t i l i z e d the Simonton's method to describe t h i s difference. They proposed that the Simonton's method i s responsibly used when i t i s used as a supportive therapy; the method i s i r r e s p o n s i b l y used when i t i s offered as a primary therapy. In conclusion, the authors stated that the cancer patient should " f i n d a medically q u a l i f i e d (Group One) cancer s p e c i a l i s t who i s sympathetic to the value of these other areas, and work out a treatment plan that i s acceptable to both" (p.163). Although many a r t i c l e s have been written that discuss unproven cancer therapies, very l i t t l e research has been conducted that investigated the actual use of these unorthodox therapies. Furthermore, the studies that have addressed the use of unorthodox cancer therapies have u t i l i z e d convenience rather than random sampling, and consequently, the samples may not be representative of the population because not every element of the population had an opportunity for s e l e c t i o n (Burns & Grove, 1987). Faw and colleagues (1977) surveyed patients and/or parents of p e d i a t r i c cancer patients to determine the percentage of patients who were knowledgeable about unproven cancer therapies. Sixty-nine interviews, which were undertaken at an outpatient p e d i a t r i c oncology c l i n i c , revealed that 27 patients (39.1%) had t r i e d , considered, or received recommendations to t r y unproven cancer therapies. The survey also determined that friends and r e l a t i v e s were the usual source of information about unproven cancer remedies. In another study, C a s s i l e t h and colleagues (1984) reported that 40% of patients, who used both conventional and unconventional therapies, discontinued conventional care e n t i r e l y i n favour of a l t e r n a t i v e regimes a f t e r an average of 8 months on standard therapy. The remaining 60% of patients pursued both kinds of treatment simultaneously. The researchers i d e n t i f i e d s i x common types of unorthodox treatments that were used by the study subjects. These s i x types were ( i n descending order of frequency): metabolic therapy, d i e t therapies, megavitamins, mental imagery, s p i r i t u a l or f a i t h healing, and "immune" therapy. In addition, the researchers noted that time since diagnosis d i d not substantively influence patients' views or behaviour. The findings of C a s s i l e t h and colleagues (1984) were not consistent with the findings of Eidihger and Schapira (1984) who surveyed 315 cancer patients regarding t h e i r views of unconventional therapies. They found that 25% believed that these treatments were e f f e c t i v e i n curing cancer. Seventy percent stated that they would use one of the forms of unconventional therapy i f i t was avail a b l e l o c a l l y . However, only seven percent of the patients were cu r r e n t l y taking or had taken medications to t r e a t t h e i r cancer other than those prescribed by t h e i r physician. Two explanations regarding unconventional use of cancer therapies were proposed by Eidinger and Schapira. F i r s t , patients become desperate when conventional treatments f a i l or are too unpleasant, and are w i l l i n g to t r y any treatment that may o f f e r some hope, e s p e c i a l l y i f i t i s more palatable. Second, unconventional therapies require active p a r t i c i p a t i o n by the patient, and t h i s p a r t i c i p a t i o n has a b e n e f i c i a l e f f e c t . Richardson (1987) compared 56 known unproven cancer therapy users with 56 known non-users i n order to determine i f there was a r e l a t i o n s h i p between the use of unproven therapies and the frequency of contact with physicians and other cancer centre care givers. The researcher found that as the frequency of contact increased (frequency > 20 v i s i t s ) , the proportion of patients using unproven cancer therapies increased. In addition, Richardson's study (1987) found that there was no association between marriage, birthplace, a family h i s t o r y of cancer, smoking, time between date of diagnosis and date of r e f e r r a l , and use of unproven cancer therapies. Mooney (1987) studied unconventional cancer therapy usage i n 71 patients with metastatic disease. She reported that only 18% had used some form of unconventional therapy, and that users were more action-oriented and more knowledgeable about treatment options. 36 Summary of the Li t e r a t u r e Review L i t e r a t u r e , which explores the issue of unproven cancer therapies, focuses mainly on the types of therapies, the reasons why cancer patients use these therapies, and the controversies that surround t h e i r use. Many authors believe that fear, f r u s t r a t i o n , and the inadequacies of the health care system are the prime reasons why patients turn to unorthodox treatment. Moreover, many proponents of unorthodox treatment claim that i n d i v i d u a l s , who have a l i f e threatening disease, have the r i g h t to pursue and use unconventional therapies. S c i e n t i f i c research concerning these therapies i s sparse. Surveys have i d e n t i f i e d the most common types of unproven cancer therapies and the percentage of study p a r t i c i p a n t s who use these therapies. A few research studies have examined the variables of b e l i e f i n control and commitment to l i f e i n i n d i v i d u a l s with cancer. The importance of the var i a b l e of b e l i e f i n control to cancer prevention, the management of treatment side e f f e c t s , and the incidence and/or recurrence of disease appears to be uncertain. Nonetheless, the re s u l t s of various studies suggest that cancer patients see themselves as well as others c o n t r o l l i n g t h e i r cancer s i t u a t i o n . Only one study was found i n the l i t e r a t u r e that explored the r e l a t i o n s h i p between locus of control and use of unproven cancer therapies. Hiratzka's study (1985) found a p o s i t i v e c o r r e l a t i o n between cancer patients' i n c l i n a t i o n to use unproven therapies and an i n t e r n a l locus of control o r i e n t a t i o n (r = 0.24, p = <0.01). Commitment to l i f e has been described by many authors as e s s e n t i a l to the promotion of q u a l i t y of l i f e f o r cancer patients. Research studies indicate that a diagnosis of cancer may cause some patients to consider t h e i r l i v e s meaningless, lacking d i r e c t i o n and purpose, while others consider t h e i r l i v e s meaningful with a d e f i n i t e purpose and goal. No studies were found i n the l i t e r a t u r e that examined the r e l a t i o n s h i p between commitment to l i f e and i n c l i n i a t i o n to use unproven cancer therapies. Research has not addressed the association between b e l i e f i n con t r o l , commitment to l i f e , and the adult cancer patient's i n c l i n a t i o n to use unproven cancer therapies. Therefore, t h i s study was designed to address the gaps i d e n t i f i e d i n the l i t e r a t u r e . CHAPTER THREE Methodology Introduction This chapter describes the research design, sampling procedure, data c o l l e c t i o n instruments, data c o l l e c t i o n procedure, e t h i c a l considerations, and the s t a t i s t i c a l procedures used i n data analysis. Research Design A d e s c r i p t i v e c o r r e l a t i o n a l design was used f o r t h i s study. This type of design allowed the researcher to t e s t functional r e l a t i o n s h i p s among variables (Burns & Grove, 1987). Sampling Procedure O r i g i n a l l y , a convenience sample of 68 subjects was to be selected from the population of adult lung cancer patients who were attending e i t h e r the lung chemotherapy and follow-up c l i n i c or the radiotherapy follow-up c l i n i c at the ambulatory care department at the A. Maxwell Evans C l i n i c of the Cancer Control Agency of B r i t i s h Columbia i n Vancouver. Permission to access these c l i n i c s was obtained from the Lung Tumour Group. However, a f t e r data c o l l e c t i o n was i n i t i a t e d , the researcher learned that access to accrue study part i c i p a n t s was l i m i t e d to patients attending the lung chemotherapy and follow-up c l i n i c . In addition, the number of follow-up patients had declined because of physicians' and patients' summer vacation schedules. Because of these factors, data c o l l e c t i o n continued for ten weeks and resulted i n a smaller sample than o r i g i n a l l y planned. Lung cancer patients were chosen for several reasons. F i r s t , there i s a high incidence of the disease. In 1987, the Cancer Control Agency of B r i t i s h Columbia (CCABC) reported a t o t a l of 1869 incident cases of lung cancer. Second, lung cancer i s a malignancy that a f f e c t s both males and females. In B r i t i s h Columbia, 1198 males and 671 females were diagnosed with t h i s disease i n 1987 (Cancer Control Agency of B r i t i s h Columbia, 1987c). Of t h i s group, approximately 53% attended the CCABC's ambulatory care department f o r treatment and/or follow-up (Cancer Control Agency of B r i t i s h Columbia, 1987c). F i n a l l y , lung cancer would provide a homogeneous group i n r e l a t i o n to a highly threatening s i t u a t i o n . In terms of l i f e expectancy, the majority of patients die within three years of diagnosis (Spiro, 1988; Canadian Cancer S t a t i s t i c s , 1988). Subjects selected for i n c l u s i o n i n the study met the following c r i t e r i a . They a l l : 1) were 20 years of age or older. 2) had a confirmed diagnosis of lung cancer. 3) had attended the ambulatory care department f o r more than one (1) month. 4) were not currently an inpatient i n any ho s p i t a l or any other health care i n s t i t u t i o n . 5) were mentally competent and had no evidence of cerebral metastases. 6) were p h y s i c a l l y and emotionally able to complete the questionnaire. 6) were l i t e r a t e i n the English language (able to read and w r i t e ) . S i x t y - f i v e patients who met the study c r i t e r i a were approached by the researcher and asked to p a r t i c i p a t e i n the study. Fifty-two patients agreed to p a r t i c i p a t e and were given a questionnaire by the researcher. Forty patients (77%) returned the questionnaire. Of the questionnaires returned, the small number of missing responses were substituted by the mode for each item. The f i n a l sample therefore consisted of 40 lung cancer patients. The c h a r a c t e r i s t i c s of the sample w i l l be presented i n Chapter Four. Data C o l l e c t i o n Instruments Three instruments and a patient information sheet were used i n t h i s study. The Multidimensional Health Locus of Control (MHLC) was u t i l i z e d to measure the person factor of b e l i e f i n control (Wallston et a l . f 1976), the Crumbaugh Purpose i n L i f e Test (PIL) was used to measure the person factor of commitment to l i f e (Crumbaugh, 1968), and the Hiratzka's A l t e r n a t i v e Therapy Scale (ATS) was adapted and used to i d e n t i f y awareness of and degree of i n c l i n a t i o n to use unproven cancer therapies. The ATS was also used to e l i c i t data on the reasons why the i n d i v i d u a l s were/were not i n c l i n e d to use unproven cancer therapies, cost of the unproven cancer therapies, and source(s) of information about the therapies. A patient information sheet was used to e l i c i t data on the socio-demographic c h a r a c t e r i s t i c s (age, sex, marital status) and the patient's understanding of the intention of treatment (curative versus p a l l i a t i v e ) . In addition, l i m i t e d information was obtained from the medical records. Wallston's Multidimensional Health Locus of Control (MHLC) The MHLC measures the dimensions of health locus of control b e l i e f s i n adults (Appendix A). The three dimensions are: i n t e r n a l i t y (ILOC), and e x t e r n a l i t y , the l a t t e r which incorporates Chance (CLOC), and Powerful Other (PLOC) (Wallston & Wallston, 1981). The self-administered instrument consists of 18 items, s i x for each dimension. The items are measured on a six-point L i k e r t scale ranging from 1 (strongly agree) to 6 (strongly disagree). The i n t e r n a l consistency was o r i g i n a l l y tested with 115 predominantly middle-class people and ranged from an alpha of 0.83 to 0.86. The three MHLC subscales are e m p i r i c a l l y independent. The Internal and Chance scores are negatively correlated and the Chance and Powerful Other scales have a low c o r r e l a t i o n of 0.2 (Wallston, 1981). Wallston and Wallston (1978) demonstrated the d i f f e r e n t i a l functional u t i l i t y of the MHLC scale over the t r a d i t i o n a l , more generalized I-E scale (Rotter, 1966) by running separate item analyses on 34 items written as f a c e - v a l i d measures of generalized expectancies regarding locus of c o n t r o l . The following c r i t e r i a were used to s e l e c t the items that constituted the f i n a l scale: a) an item mean close to 3.5 which i s the scale midpoint; b) a wide d i s t r i b u t i o n of response alternatives on the item; and c) a low c o r r e l a t i o n with s o c i a l d e s i r a b i l i t y . Using the above c r i t e r i a , 18 pairs of items were selected with the items paired on the basis of meaning. The pairs were then subdivided into three subscales with s i x pairs of items chosen for each subscale - ILOC, CLOC, and PLOC. Then, the pairs were divided to construct two equivalent forms of the MHLC scale (Form A and B). Form B was used i n t h i s study. Alpha i n t e r n a l consistency r e l i a b i l i t i e s f or Form B were reported as follows: ILOC 0.71, PLOC 0.72, and CLOC 0.69. Dodd and colleagues (1985) found that the three subscales of the MHLC instrument demonstrated high r e l i a b i l i t y c o e f f i c i e n t s . The Cronbach alpha r e l i a b i l i t y c o e f f i c i e n t s of the MHLC i n t h e i r study ranged from 0.65 to 0.75. In t h i s study, the i n t e r n a l consistency r e l i a b i l i t y using Cronbach alpha were as follows: ILOC 0.78, CLOC 0.56, and PLOC 0.82. As an i n i t i a l i n d i c a t i o n of pr e d i c t i v e v a l i d i t y , c o r r e l a t i o n s were computed between health status and the MHLC scores. As expected, health status cor r e l a t e d p o s i t i v e l y with ILOC (r = .403, p <.001), negatively with CLOC (r = -.275, p<.01), and d i d not c o r r e l a t e with PLOC (r = -.055) (Wallston & Wallston, 1976). Crumbaugh's Purpose i n L i f e Scale (PIL) The Purpose i n L i f e Test (PIL) i s a 20-item scale that measures the degree to which an i n d i v i d u a l experiences meaning and purpose i n l i f e (Crurabaugh, 1968). Responses are answered on a 7-point scale rated from 1 (low purpose) to 7 (high purpose). Higher scores denote greater l e v e l s of experienced purpose or meaningfulness. The PIL's reported i n t e r n a l consistency r e l i a b i l i t y ( s p l i t - h a l f c o r relation) was 0.85 for a sample of 120 church parishioners (Crumbaugh, 1968). Spearman-Brown corrected t h i s to 0.92. The PIL has been shown to be a psychometrically sound instrument. Meier and Edwards (1974) reported a 1-week s t a b i l i t y c o e f f i c i e n t of 0.83. Reker and Cousins (1979) found that PIL's i n t e r n a l consistency c o e f f i c i e n t ( s p l i t - h a l f correlation) was 0.77, corrected to 0.87. The t e s t - r e t e s t c o r r e l a t i o n s f o r 31 introductory psychology students over a 6-week period y i e l d e d s t a b i l i t y c o e f f i c i e n t s of 0.79 f o r the PIL. Lewis (1982) used the PIL i n studying personal c o n t r o l and q u a l i t y of l i f e i n late-stage cancer patients. She found the i n t e r n a l consistency r e l i a b i l i t y of the PIL to be 0.92 and the i n t e r n a l r e l i a b i l i t y to be 0 .88 . Hilton's study (1987) of 227 breast cancer patients also found that the PIL scale demonstrated high i n t e r n a l consistency with a c o e f f i c i e n t alpha of 0 . 88 . Item-total c o r r e l a t i o n s ranged from 0 .21 to 0 . 70 , a l l of which were s i g n i f i c a n t at the .05 l e v e l . In the present study, the i n t e r n a l consistency r e l i a b i l i t y using Cronbach alpha was 0 .94 . Hiratzka's Adapted Alt e r n a t i v e Therapy Scale (ATS); The A l t e r n a t i v e Therapy Scale measures awareness of and i n c l i n a t i o n to use unproven cancer therapies (Appendix B). The f i r s t section of the scale i s comprised of sixteen types of unproven cancer therapies, and the part i c i p a n t s are asked to answer two questions regarding each method. The f i r s t question assesses awareness and asks whether the p a r t i c i p a n t s have or have not heard of each of the therapies. The p a r t i c i p a n t s ' awareness scores are derived by adding the number of unproven cancer treatment methods about which they have heard. The second question asks the subjects to indicate where they would rank themselves on a six-point i n c l i n a t i o n scale for each of the l i s t e d methods as well as any add i t i o n a l methods they might add to the l i s t . The scale has the following l e v e l s : a) would never consider t r y i n g , b) have not considered t r y i n g , c) have not t r i e d , d) would consider t r y i n g at some time i n the future, e) have considered t r y i n g , and f) have t r i e d . Each l e v e l i s assigned a numerical value ranging from one (would never consider trying) to s i x (have t r i e d ) . The higher the score the greater the l e v e l of i n c l i n a t i o n to use unproven cancer treatment methods. The i n d i v i d u a l s ' o v e r a l l i n c l i n a t i o n to use score i s derived by assigning the number of t h e i r highest l e v e l of response to any of the therapies on the l i s t . This score i s not contingent upon how many times they mark a p a r t i c u l a r l e v e l . That i s , i f p a r t i c i p a n t s indicate they have t r i e d l a e t r i l e , they w i l l receive a score of s i x even though they may mark that they "would never consider t r y i n g " any of the remaining items. The second section of the scale focuses on the reasons why the subjects are/are not i n c l i n e d to use unproven cancer therapies, the cost of the unproven therapies used, and the source(s) of information about the therapies. No data are a v a i l a b l e from the author regarding v a l i d i t y or r e l i a b i l i t y of Hiratzka's scale. The ATS was modifed for t h i s study. With permission from the author, eleven unproven cancer therapies were added to the l i s t i n order to include the most current and popular therapies. These ad d i t i o n a l items for the scale were chosen from the l i t e r a t u r e and i n consultation with the Cancer Control Agency of B r i t i s h Columbia's manual of methods of unproven cancer therapies (1987b). Patient Information Sheet In addition to the three instruments, an information sheet which was developed by the inv e s t i g a t o r to record relevant demographic data and the patient's understanding of the int e n t i o n of treatment was given to each p a r t i c i p a n t (Appendix C). This information was used to describe the sample as well as assess the possible influence of these variables on the hypotheses under study. Medical Records In addition to the information gathered by questionnaire, the researcher obtained the following data from the patient's medical record: date of diagnosis, status of disease, current treatment(s), time since previous treatment(s), effectiveness of i n i t i a l treatment and any subsequent treatment(s), intent of present treatment (curative versus p a l l i a t i v e ) , and smoking hist o r y . Procedure f o r Data C o l l e c t i o n The researcher was present at the ambulatory care department during the lung chemotherapy and follow-up c l i n i c . Patients were i d e n t i f i e d and selected consecutively from the d a i l y c l i n i c appointment schedules. The patients were i n d i v i d u a l l y approached by the researcher while they were waiting for t h e i r c l i n i c appointments and a b r i e f verbal explanation of the study was given. The purpose of the study was also outlined i n a Patient Information and Consent Form (Appendix D). A f t e r the consent form was signed, p a r t i c i p a n t s were given a clipboard, a p e n c i l , and an envelope, and asked to complete the questionnaire while they waited for t h e i r appointments. Completion time was approximately 30 minutes. The completed questionnaire was returned i n the envelope to the researcher who was avail a b l e at the c l i n i c while the p a r t i c i p a n t was completing the questionnaire. I f the study part i c i p a n t s were unable to complete the questionnaire during t h e i r time at the c l i n i c , a self-addressed, stamped envelope was provided. Par t i c i p a n t s were requested to mail the completed questionnaire to the researcher. The researcher was ava i l a b l e by telephone to answer any questions. P i l o t Test A procedural p i l o t t e s t was conducted on f i v e subjects who were interviewed a f t e r completing the questionnaire. No changes were made i n the format as a r e s u l t of the i n i t i a l p i l o t t e s t i n g . The f i v e completed questionnaires were included i n the f i n a l data pool. Consent and Human Rights Considerations The investigator received approval through the Univ e r s i t y of B r i t i s h Columbia Behavioural Sciences Screening Committee for Research and Other Studies Involving Human Subjects, and the following committees at the Cancer Control Agency of B r i t i s h Columbia (CCABC): Nursing Research, Lung Tumour Group, and C l i n i c a l Investigations. In addition, consent to access the study p a r t i c i p a n t s ' medical records was obtained from the Health Records department at CCABC. E t h i c a l considerations involved each pa r t i c i p a n t ' s r i g h t to informed consent and r i g h t to privacy. Therefore, each p o t e n t i a l p a r t i c i p a n t was given a Patient Information and Consent Form describing the intent and design of the study. A signed consent form indicated the subject's willingness to p a r t i c i p a t e (Appendix D). A l l prospective p a r t i c i p a n t s were informed i n wr i t i n g that they had the r i g h t to refuse to p a r t i c i p a t e , to withdraw from the study at any time, and to refuse to answer any questions without penalty. In addition, p o t e n t i a l p a r t i c i p a n t s were advised that non-participation i n the study would not jeopardize i n any way present or future care they may receive. The researcher was avail a b l e at the c l i n i c and by telephone to answer any questions. A l l information obtained from the medical records and from the questionnaires was held c o n f i d e n t i a l through the use of code numbers. Parti c i p a n t s were asked not to write t h e i r name or i d e n t i f y themselves i n any way on the questionnaire. A l i s t of the parti c i p a n t s names and code numbers, and consent forms were kept separate from the data and accessible only to the researcher. Furthermore, to insure that the patients c l i n i c i a n s would not be informed of the patients' enrolment i n t h i s study, the consent forms were kept by the researcher. In compliance with the guidelines set down by the C l i n i c a l Investigation Committee, consents w i l l be retained by the investigator f o r a period of two years. A f t e r the two years, a l l consents w i l l be submitted to the Health Records at CCABC f o r f i l i n g i n the patients' medical records. F i n a l l y , published and unpublished materials w i l l not include names of subjects but w i l l acknowledge that CCABC allowed t h i s study to be conducted with patients attending the ambulatory care department at the A. Maxwell Evans C l i n i c . Data Analysis Data from the questionnaires were coded, entered i n t o a computer f i l e and analyzed using the S t a t i s t i c a l Package for the Soc i a l Sciences (SPSS:X) computer program. A l l key-punching was v e r i f i e d by a colleague. Descriptive and nonparametric s t a t i s t i c s were u t i l i z e d to analyze the data. The association between b e l i e f i n control and the cancer patient's i n c l i n a t i o n to use unproven cancer therapies as well as the association between commitment to l i f e and the cancer patient's i n c l i n a t i o n to use unproven therapies were tested using the Spearman rank c o r r e l a t i o n c o e f f i c i e n t . Nonparametric s t a t i s t i c s were employed because a small convenience sample was used and therefore the assumption of normality upon which parametric s t a t i s t i c s rests could not be assured (Conover, 1980; Burns & Grove, 1987). The l e v e l of s i g n i f i c a n c e set f o r t h i s study was 0.05. CHAPTER FOUR Presentation and Discussion of Results Introduction This chapter i s arranged under three headings: c h a r a c t e r i s t i c s of the sample, findings, and discussion of r e s u l t s . C h a r a c t e r i s t i c s of the Sample The sample consisted of 40 lung cancer patients who were attending the lung chemotherapy and follow- up c l i n i c at the ambulatory care department at the A. Maxwell Evans C l i n i c at CCABC. The demographic data, health c h a r a c t e r i s t i c s , and information regarding subject perception about the intent of treatment(s) w i l l be reported. In addition, information gathered from the medical records w i l l be presented. Demographic C h a r a c t e r i s t i c s of the Sample Demographic data c o l l e c t e d from the study p a r t i c i p a n t s were age, sex, and marital status. The age of the partic i p a n t s ranged from 34 to 79 (M=60) years (see Table I ) . Of the 40 subjects, 14 were female (35.0%) and 26 (65.0%) were male. The marital status of the par t i c i p a n t s was as follows: 30 were married (75.0%), one was separated (2.5%), seven were divorced (17.5%), and two were widowed (5.0%). Table I Age of Study Participants Acre Frequency Percent 30-39 1 2.5 40-49 2 5.0 50-59 15 37.5 60-69 19 47.5 70-79 3 7.5 Total 40 100.0 Health C h a r a c t e r i s t i c s of the Sample The health data c o l l e c t e d from the patients' medical records were time since diagnosis, disease status, current treatment(s), previous treatment(s), time since previous treatment(s), and smoking hi s t o r y . The number of months since diagnosis of t h e i r lung cancer ranged from 1.5 to 50.0 (M= 14.46) months (see Table I I ) . According to the medical records, 55.0% of the subjects had c l i n i c a l evidence of metastatic disease at the time of diagnosis. T h i r t y subjects had undergone previous Table II Time since Diagnosis i n Months Time Frequency Percent 1-6 16 40.0 7-12 5 12.5 13-24 11 27.5 25-48 7 17.5 >48 1 2.5 Total 40 100.0 treatment(s). Twenty-two subjects (55.0%) had received both chemotherapy and radiotherapy, while s i x (15.0%) had been treated with chemotherapy alone. Only two subjects (5.0%) had undergone "complete sug i c a l resection" of t h e i r lung tumour immediately following diagnosis. Time since previous treatment(s) ranged from one to 46 (M= 10.7) months. In terms of current treatment, 23 subjects (57.5%) were not receiving any current treatment but were being followed by t h e i r c l i n i c physician. Eight subjects (20.0%) were receiving chemotherapy f o r t h e i r lung cancer, two (5.0%) were undergoing radiotherapy, and two (5.0%) were rec e i v i n g both chemotherapy and radiotherapy f o r t h e i r disease. Five subjects (12.5%) were being p a l l i a t e d with medications f o r e i t h e r disease progression or recurrence. The physicians' progress notes i n the medical records reported the current disease status of the p a r t i c i p a n t s . These notes indicated that 20 subjects (50.0%) were i n "complete remission", 17 (42.5%) had active disease with metastases, and three (7.5%) had recurrent disease. A l l 40 subjects had a h i s t o r y of smoking. Nineteen subjects (47.5%) were smokers at the time of diagnosis while 21 subjects (52.5%) had e i t h e r quit at the time of diagnosis or several years p r i o r to being diagnosed with lung cancer. Intent of Treatment(s) Two questions on the questionnaire addressed the p a r t i c i p a n t s ' perceptions of the intent of treatment(s). The f i r s t question asked "do you believe that your cancer i s going to be cured?" T h i r t y subjects (75.0%) believed that t h e i r cancer was going to be cured while only three (7.5%) believed that t h e i r disease was not curable. Four (10.0%) were uncertain about the prognosis. Three subjects (7.5%) did not answer the question. The second question asked "has your c l i n i c doctor t o l d you that your cancer can be cured?" Fourteen subjects (35.0%) indicated that t h e i r c l i n i c physician had t o l d them that t h e i r cancer could be cured. Eleven subjects (27.5%) claimed that they were t o l d by t h e i r cancer doctor that t h e i r disease was not curable. Thirteen subjects (32.0%) were uncertain whether t h e i r c l i n i c doctor had divulged anything about t h e i r prognosis. Two subjects (5.0%) di d not answer the question. According to the Spiro (1988), there are four aims to treatment(s) for lung neoplasms: cure, remission, disease c o n t r o l , or p a l l i a t i o n . The medical records were examined i n order to ascertain the aim of treatment(s) for each study p a r t i c i p a n t . Unfortunately, intent of treatment(s) was often d i f f i c u l t for t h i s researcher to determine from the medical records. Findings The findings of the study w i l l be presented i n r e l a t i o n to the major study v a r i a b l e s : awareness of and the degree of i n c l i n a t i o n to use unproven cancer therapies, b e l i e f i n control, and commitment to l i f e . The r e s u l t s of the hypotheses' t e s t i n g - the r e l a t i o n s h i p of b e l i e f i n control to i n c l i n a t i o n to use unproven therapies, and the r e l a t i o n s h i p of commitment to l i f e to i n c l i n a t i o n to use - w i l l then be presented. Spearman rank c o r r e l a t i o n c o e f f i c i e n t was the s t a t i s t i c a l t e s t used to t e s t the hypotheses. Following t h i s , the findings w i l l be presented that explored the supplementary objectives: reasons why the patients have t r i e d or have considered t r y i n g unproven therapies, reasons why the patients have not t r i e d or would never consider t r y i n g unproven therapies, the sources(s) of information about the therapies, and the cost of the therapies that have been t r i e d by the p a r t i c i p a n t s . F i n a l l y , the r e s u l t s of the a n c i l l a r y analyses which examined the r e l a t i o n s h i p between i n c l i n a t i o n to use and the variables of age, gender, marital status, and p a r t i c i p a n t s ' perceptions of intent of treatment(s) w i l l be reported. Awareness of and I n c l i n a t i o n to Use Unproven Cancer Therapies Awareness of Unproven Cancer Therapies The p a r t i c i p a n t s ' awareness scores were derived by adding the number of unproven cancer treatment methods about which they had heard. There were 27 unproven cancer therapies l i s t e d , and 10 addit i o n a l spaces for the partic i p a n t s to write i n any other therapies about which they were f a m i l i a r . The awareness scores ranged from one to 13 (M = 5.925, mode = 5 ) . Twenty-two subjects (55.0%) had heard of si x or more unproven therapies while 18 subjects (45%) had heard of f i v e unproven therapies or fewer. A l l f o r t y subjects had heard of at lea s t one of the therapies on the l i s t (see Table I I I ) . The p a r t i c i p a n t s were most f a m i l i a r with f a i t h healing (92.5%), l a e t r i l e (70.0%), and megadose vitamin therapy (65.0%). The f i r s t two columns i n Table IV presents the t o t a l number of par t i c i p a n t s who had heard/not heard about each unproven cancer therapy on the l i s t . I n c l i n a t i o n to Use Unproven Cancer Therapies The study part i c i p a n t s ranked themselves on a six-point i n c l i n a t i o n scale for each of the l i s t e d methods as well as any additional unproven therapies they added to the l i s t . Eighteen subjects (45%) had a c t u a l l y t r i e d an unproven therapy. Of these 18 subjects, two had t r i e d a t o t a l of three 60 Table III Awareness of Unproven Cancer Therapies Scores Number of Therapies Frequency Percent 0 0 0 1 3 7.5 2 3 7.5 3 3 7.5 4 3 7.5 5 6 15.0 6 5 12.5 7 5 12.5 8 3 7.5 9 5 12.5 10 3 7.5 11 0 0 12 0 0 13 1 2.5 >14 0 0 Total 40 100.0 Table IV: Awareness of and Inclination to Use Unproven Cancer Therapies Have Heard Of Have Not Heard Of Have Tried Have Considered Trying Would Consider Trying at Sometime in Future Have Not Tried Have Not Considered Trying Would Never Consider Trying 1. Laetrile 28 12 1 0 1 12 11 3 2. Grape Cure (grape diet) 8 42 0 0 1 2 2 2 3. Psychic surgery 23 17 1 0 0 3 6 8 4. Ozone generators 5 35 0 0 0 1 4 0 5. Carcin (neocarin or carzodelan) 2 38 0 0 0 1 2 0 6. Chaparral tea 8 32 0 0 2 3 3 0 7. Hoxey chemotherapy (Harry Hoxsey's Herbal Tonic) 3 37 0 0 0 1 2 0 8. Coffee enemas 4 36 0 0 0 1 2 2 9. Vibrating machines 7 33 0 0 0 2 4 0 10. Taheebo 7 33 3 0 3 1 2 0 11. Kelly Malignancy Index and Ecology Therapy 0 40 0 0 0 0 2 0 12. Krebiozen 3 37 0 0 0 0 3 1 13. Carrot juice diet 20 20 0 1 5 7 2 1 14. Greek Cure (Dr. Hariton Alivizatos) 0 40 0 0 0 0 2 0 15. Iscador 0 40 0 0 0 0 2 0 16. Orgone accumulators 1 39 0 0 0 0 1 0 17. Antineoplastons 0 40 0 0 0 0 2 0 18. Chacon 1 39 0 0 0 0 2 0 Table continued on page 62 Table IV: Awareness of and Inclina- 19. Comfrey 20. Diamethyl sulfoxide 21. Essiac 22. Faith Healing 23. Immunoagumentative Therapy (IAT) 24. Koch's treatment 25. Macrobiotic diets 26. Megadose vitamin ttherapy 27. Imagery Have Heard Of 10 37 11 26 18 ion to Use Unproven Cancer Therapies ( cont.) Have Not Heard Of 30 37 34 38 40 29 14 22 28. Are there any other methods of cancer treatment that you have heard of that have not been recommended to you by your doctor? If so please list them and answer the questions to the right of the double line concerning them 1. Self Hypnosis 2. Garlic 3. Live cell therapy 4. Naturopathic medicine Have Tried Have Considered Trying Would Consider Trying at Sometime in Future Have Not Tried 13 Have Not Considered Trying 9. 10. of the therapies on the l i s t while two had t r i e d a t o t a l of two therapies. The remaining 14 subjects had t r i e d one unproven therapy only (see Table IV). Two subjects (5%) had considered t r y i n g ; and eight subjects (20%) indicated that they would consider t r y i n g an unproven therapy at some time i n the future. Only two subjects (5%) indicated that they would never consider t r y i n g any of the unproven cancer therapies on the l i s t . According to Hiratzka (1985), i n c l i n a t i o n scores of four or higher indicate a strong i n c l i n a t i o n or a p o s i t i v e a ttitude toward the use of unproven cancer therapies (four - would consider t r y i n g some time i n the future; f i v e - have considered t r y i n g ; s i x - have t r i e d ) . In t h i s study, 28 patients (70%) had a strong i n c l i n a t i o n toward such use. There were 13 unproven cancer therapies which scored a four or higher on the degree of i n c l i n a t i o n to use scale (see Table IV). The most popular was imagery which eight people had a c t u a l l y t r i e d and four who had ei t h e r considered t r y i n g or would consider t r y i n g some time i n the future. Megadose vitamin therapy, f a i t h healing, and taheebo were the next three most popular therapies. Four p a r t i c i p a n t s added the following unproven therapies to the l i s t : self-hypnosis, l i v e c e l l therapy, g a r l i c , and naturopathic medicine. These four p a r t i c i p a n t s indicated that they had t r i e d these add i t i o n a l therapies. B e l i e f i n Control B e l i e f i n control was measured by the MHLC scale. The Internal Locus of Control (ILOC) scores ranged from 14 to 36 with a median of 28, a mean of 27.63, and a SD of 5.44. The Chance (CLOC) scores ranged from 8 to 29 with a median of 18.00, a mean of 17.38, and a SD of 5.6. Powerful Other (PLOC) scores ranged from 7 to 36 with a median of 21.50, a mean of 21.75, and a SD = 7.39. Table V presents a summary of the MHLC scores and Table VI presents the median, mean, and standard deviation for the three subscales of the MHLC. According to Wallston and Wallston (1981), scores greater than 18 on one subscale and lower than 18 on the other two subscales indicate a "pure" or strong locus of control or i e n t a t i o n . In t h i s study, examination of the i n d i v i d u a l scores on the three subscales of the MHLC (Appendix E) disclosed two in t e r e s t i n g findings. F i r s t , 14 subjects had Table V Summary of the Multidimensional Health Locus of Control Scores Frequency of Locus of Control Score Internal Chance Powerful Other 1-6 0 0 0 Low 7-12 0 10 3 13-18 2 13 9 19-24 9 13 15 High 25-30 14 4 6 31-36 15 0 7 Total 40 40 40 Table VI Median, Mean, and Standard Deviation for the Multidimensional Health Locus of Control Subscales Locus of Control Powerful Internal Chance Other Median 28.00 18.00 21.50 Mean 27.63 17.38 21.75 Standard Deviation 5.44 5.60 7.39 high scores (>18) on both the ILOC and PLOC subscales, and two subjects had high scores (>18) on both the ILOC and CLOC subscales. Second, 13 subjects scored high (>18) on a l l three subscales. Therefore, i n t h i s study, there were nine "pure i n t e r n a l s " and only two "pure externals". Hypothesis 1: The cancer patient's degree of i n c l i n a t i o n to use unproven cancer therapies i s p o s i t i v e l y associated with an i n t e r n a l locus of co n t r o l . The f i r s t hypothesis postulated i n t h i s study was that the degree of i n c l i n a t i o n to use unproven therapies i s p o s i t i v e l y associated with an i n t e r n a l locus of control o r i e n t a t i o n . Spearman rank c o r r e l a t i o n c o e f f i c i e n t was used to t e s t t h i s hypothesis. No s i g n i f i c a n t c o r r e l a t i o n was found between i n c l i n a t i o n to use and i n t e r n a l locus of con t r o l (rho = 0.03, p = 0.42). In addition, no s i g n i f i c a n t r e l a t i o n s h i p was found between i n c l i n a t i o n to use and ei t h e r Chance (CLOC) (rho = -0.09, p = 0.28) or Powerful Other (PLOC) (rho = -0.11, p = 0.23) orientations. The degree of i n c l i n a t i o n to use unproven cancer therapies was therefore not p o s i t i v e l y associated with an i n t e r n a l locus of control o r i e n t a t i o n . Commitment to L i f e Commitment to l i f e was measured by Crumbaugh's Purpose i n L i f e scale (PIL). PIL scores ranged from 73 to 140 with a median of 116 and a mean of 112.65 (SD = 15.99) (see Table VII). Twenty-six subjects (65%) scored greater than 113 which indicates a d e f i n i t e purpose and meaning to l i f e . Only s i x subjects (15.0%) scored less than 91 which indicates a lack of c l e a r meaning and purpose i n l i f e . Eight subjects (20.0%) scored between 91 and 113 which represents a somewhat uncertain purpose i n l i f e . Hypothesis 2: The cancer patient's degree of i n c l i n a t i o n to use unproven cancer therapies i s p o s i t i v e l y associated with commitment to l i f e . The second hypothesis of t h i s study proposed that the degree of i n c l i n a t i o n to use unproven therapies was p o s i t i v e l y associated with commitment to l i f e (see Table VII). Spearman rank c o r r e l a t i o n c o e f f i c i e n t was used to t e s t t h i s hypothesis. No s i g n i f i c a n t c o r r e l a t i o n was found between i n c l i n a t i o n to use and commitment to l i f e (rho = -0.10, p = 0.27). The degree of i n c l i n a t i o n to use unproven cancer therapies was not p o s i t i v e l y associated with commitment to l i f e . Table VII Purpose i n L i f e Scores PIL Score Frequency Percent Low <72 0 0.0 73-91 6 15.0 Uncertain 92-112 8 20.0 High 113-140 26 65.0 Total 40 100.0 Supplementary Objectives The supplementary objectives of t h i s study were to explore the reasons why some cancer patients have t r i e d or have considered t r y i n g unproven cancer therapies, and the reasons why others have not t r i e d or would never consider t r y i n g unproven cancer therapies. In addition, t h i s study investigated the p a r t i c i p a n t s source(s) of information about unorthodox cancer remedies, and assessed the cost of the therapies that have been t r i e d by the subjects. 69 Reasons t o Co n s i d e r o r Use Unproven Cancer T h e r a p i e s The s u b j e c t s were asked t o i d e n t i f y t he reasons why the y had c o n s i d e r e d o r would c o n s i d e r u s i n g unproven cancer t h e r a p i e s . Ten of the e i g h t e e n p a r t i c i p a n t s who answered the q u e s t i o n i n d i c a t e d t h a t t h e y would c o n s i d e r u s i n g an unproven th e r a p y i f t h e i r p r e s e n t treatment(s) d i d not work. One s u b j e c t s t a t e d "when a l l o t h e r treatments have been t r i e d and were u n s u c c e s s f u l , then I would t r y a n y t h i n g " . Others used statements such as " i f a l l e l s e f a i l s " ; and " i t ' s worth t r y i n g these treatments i f n o t h i n g e l s e can be done". Fo u r t e e n p a r t i c i p a n t s who had t r i e d an unproven t h e r a p y o f f e r e d an e x p l a n a t i o n f o r the use. The t h r e e p r i n c i p a l e x p l a n a t i o n s were as f o l l o w s : 1) s i x i n d i c a t e d i t was a recommendation by o t h e r s ( f a m i l y member, f a m i l y d o c t o r , nurse, t e l e v i s i o n - "heard about i t on Donahue"). 2) f o u r i n d i c a t e d t h a t they b e l i e v e d i n the unproven cancer therapy. 3) f o u r used i t as an adj u n c t t o the c u r r e n t , t r a d i t i o n a l treatment; "I needed something more p o s i t i v e and i t gave me c o n t r o l as w e l l as knowing t h a t I was g e t t i n g good med i c a l c a r e " . 70 Reasons Not to Consider or Use Unproven Cancer Therapies The p a r t i c i p a n t s were asked to i d e n t i f y the reasons why they had not t r i e d , had not considered or would never consider using unproven therapies. The reasons can be c l a s s i f i e d into two major categories: skepticism regarding the e f f i c a c y of the therapies, and lack of information about the therapies. Ten par t i c i p a n t s were s k e p t i c a l , explaining that they "didn't believe they [unproven therapies] work". Six other p a r t i c i p a n t s stated that more background information on these therapies i s needed before they would t r y any. I t i s i n t e r e s t i n g to note that only one subject indicated that he would not t r y any unproven cancer method "because I have f a i t h i n the medical profession". Cost Participants were asked to estimate the cost of the unproven therapies which they had used. Only nine subjects (50%) provided the cost of the unorthodox therapy. Two subjects indicated that there was no cost. The remaining seven indicated that the monthly cost of the therapy ranged from $20.00 to $400.00 (yearly cost range - $240.00 to $4800 .00 ) . The l e a s t expensive therapy was vitamin therapy. Three p a r t i c i p a n t s indicated that they had spent less than $600.00 per year on the vitamins. The most expensive therapies were those that required the help of a therapis t . Two partic i p a n t s provided examples of t h i s type of expenditure. The p a r t i c i p a n t who spent $400.00 per month explained that t h i s t o t a l p r i c e included the appointment with the therapist, the prescribed medications, and money spent on gasoline. The other p a r t i c i p a n t spent $55.00 f o r each self-hypnosis and imagery session that was f a c i l i t a t e d by a h o l i s t i c p r a c t i t i o n e r . Sources of Information about Unproven Cancer Therapies This study asked the partic i p a n t s to indicate how they heard/learned about the various unproven cancer therapies. A l i s t of sources was provided, and the pa r t i c i p a n t s were asked to check a l l that applied. The most common information source was the media (books, magazines, newspapers, radio/TV) (see Table VII I ) . Friends and r e l a t i v e s were the next most common sources of information about unorthodox treatments. Table VIII Sources of Information about Unproven Therapies (N =29) No. of Source Participants Percent Magazines 16 55.17 Radio/TV 15 51.72 Books 13 44.82 Friends/Relat ive s 13 44.82 Newspapers 12 41.38 Health food store 5 17.24 Family Dr. 5 17.24 Cancer Dr. 2 6.90 Nurse 2 6.90 Other (Naturopath) 1 3.45 Mail Order 0 0.00 Doctors and nurses were not customary sources of information about unproven cancer therapies. Only two pa r t i c i p a n t s indicated that they had heard about imagery from a nurse. Family doctors and oncologists, although seldom regarded as sources of information, usually provided information about therapies such as vitamins, imagery, and d i e t s . A n c i l l a r y Analyses The variables of age, gender, marital status, and p a r t i c i p a n t s ' perception of intent of treatment(s) were correlated with the degree of i n c l i n a t i o n to use unproven cancer therapies i n order to i d e n t i f y any relationships among these v a r i a b l e s . A n c i l l a r y analysis was also performed to investigate the r e l a t i o n s h i p between awareness of unproven therapies and the degree of i n c l i n a t i o n to use, and the r e l a t i o n s h i p between awareness of unproven therapies and b e l i e f i n c o n t r o l . Spearman rank c o r r e l a t i o n c o e f f i c i e n t was used to examine the r e l a t i o n s h i p between age and the degree of i n c l i n a t i o n to use. A s i g n i f i c a n t negative c o r r e l a t i o n (rho = -0.28, p = 0.04) was found between age and i n c l i n a t i o n to use unproven cancer therapies. The younger subjects were more apt to have a stronger i n c l i n a t i o n to use unorthodox cancer treatments than the older subjects. The degree of i n c l i n a t i o n to use unproven therapies was crosstabulated by gender and marital status. Nineteen of the 26 male patients (73%) and nine of the 14 female patients (64%) had a strong i n c l i n a t i o n to use unproven treatments. There appeared to be no s i g n i f i c a n t difference i n i n c l i n a t i o n to use unproven cancer remedies because of gender. Of the 30 married patients, 19 (63.3%) demonstrated a strong i n c l i n a t i o n to use unorthodox cancer treatments. In f a c t , 13 married patients (43.3%) had used an unproven therapy. A l l the divorced (N = 7) and widowed patients (N = 2) were i n c l i n e d to use an unproven therapy. Four divorced patients (57.1%) and one widowed patient (50%) had a c t u a l l y t r i e d an unproven cancer remedy. However, due to small c e l l s i z e , no s t a t i s t i c a l analysis was performed. In t h i s study, 30 subjects (75%) believed that t h e i r cancer was curable, and 14 (35%) believed that t h e i r oncologist had t o l d them that t h e i r cancer was curable. Crosstabulation of the degree of i n c l i n a t i o n to use unproven therapies and the patients' b e l i e f that t h e i r cancer was curable indicated that of the 30 patients who believed that t h e i r lung cancer was going to be cured, 21 (65%) had a strong i n c l i n a t i o n to use unproven cancer therapies. Spearman's c o r r e l a t i o n c o e f f i c i e n t was computed to determine i f there was a r e l a t i o n s h i p between patients' b e l i e f i n cure and i n c l i n a t i o n to use unproven therapies. No s i g n i f i c a n t r e l a t i o n s h i p was found (rho = 0.05, p = .38). Spearman's c o r r e l a t i o n c o e f f i c i e n t was computed to determine the association between awareness of unproven therapies and the degree of i n c l i n a t i o n to use these therapies. Although not s i g n i f i c a n t l y r e l a t e d , the association between awareness and degree of i n c l i n a t i o n approached a l e v e l of s i g n i f i c a n c e (rho = 0.25, p = 0.059) . Spearman rank c o r r e l a t i o n c o e f f i c i e n t s were also computed between b e l i e f i n control and awareness of unproven cancer therapies. No s i g n i f i c a n t c o r r e l a t i o n was found between awareness and any of the three locus of control orientations, although the association between awareness and PLOC approached a l e v e l of s i g n i f i c a n c e (ILOC: rho = 0.18, p = 0.13; CLOC: rho = -0.18, p = 0.13; PLOC: rho = -0.23, p = 0.07). Discussion of the Results The discussion of the re s u l t s w i l l take place under s i x major headings: c h a r a c t e r i s t i c s of the sample, awareness and i n c l i n a t i o n to use unproven therapies, b e l i e f i n con t r o l , commitment to l i f e , and the r e l a t i o n s h i p of b e l i e f i n control to i n c l i n a t i o n to use, and the r e l a t i o n s h i p of commitment to l i f e to i n c l i n a t i o n to use unproven cancer therapies. In addition, discussion w i l l address the findings of the supplementary research objectives and a n c i l l a r y analyses. The r e s u l t s of t h i s study w i l l be discussed i n r e l a t i o n to t h e o r e t i c a l expectations, other research studies, and the methodological problems inherent i n the study. C h a r a c t e r i s t i c s of the Sample The small sample s i z e , the convenience method of sampling, and the investigator's i n a b i l i t y to access the radiotherapy follow-up c l i n i c may have resulted i n a sample that was not representative of the population of lung cancer patients who are currently attending the ambulatory care department at the A. Maxwell Evans C l i n i c at the Cancer Control Agency of B r i t i s h Columbia i n Vancouver. According to the Canadian Cancer S t a t i s t i c s (1988) the r a t i o of new cases of lung cancer (male/female) i n Canada i s 2.5:1 (number of new cases: male - 11,200 and female - 4,200). Therefore, with respect to gender, the sample of t h i s study appears to approach the national trend (study r a t i o -1.9:1). The Province of B r i t i s h Columbia D i v i s i o n of V i t a l S t a t i s t i c s Annual Report (1987) provides data which i l l u s t r a t e s that even though death by lung cancer increases with age (>60 years - t o t a l deaths = 1149; <60 years - t o t a l deaths = 281), lung cancer i s a neoplasm that i s indiscriminate of age. The sample i n t h i s study r e f l e c t s t h i s p r o c l i v i t y , 18 subjects (45.0%) were under 60 years of age, and 22 subjects (55.0%) were over 60 years of age. Therefore, with respect to age, the sample of t h i s study appears to be representative of the population of lung cancer patients i n B r i t i s h Columbia. Awareness of and I n c l i n a t i o n to Use Unproven Cancer Therapies This section w i l l discuss the findings r e l a t e d to the p a r t i c i p a n t s ' awareness of and degree of i n c l i n a t i o n to use unproven cancer therapies. Awareness of Unproven Cancer Therapies Awareness of unproven cancer therapies scores were found to range from 1 to 13 (M = 5.9, mode = 5). These findings were not sur p r i s i n g . This researcher believes that many cancer patients have access to an information network ( i . e . medical l i t e r a t u r e , health care professionals, organizations, media, health f a i r s ) , and consequently, are aware of at l e a s t f i v e unproven therapies. Hiratzka (1985) reported s i m i l a r r e s u l t s : her study found that awareness scores ranged from none to 14 therapies. In t h i s study, 22 subjects (55.0%) had heard of s i x or more unproven remedies while 18 subjects (45.0%) had heard of f i v e therapies or fewer. These r e s u l t s were compared to the findings i n Hiratzka's (1985) study. Hiratzka reported that over 50% of her study sample (N = 125) had heard of three or fewer unproven therapies while only s i x percent had heard of over f i v e methods. One possible explanation f o r the d i f f e r e n t findings i s that subjects i n Hiratzka's study had fewer unproven therapies (N = 16) from which to choose while t h i s study provided the subject with a l i s t of 27 unproven therapies. This study found that the p a r t i c i p a n t s were most f a m i l i a r with f a i t h healing (92.5%), l a e t r i l e (70.0%), and megadose vitamin therapy (65.0%). Likewise, Faw and colleagues (1977) discovered that l a e t r i l e and f a i t h healing were named more often then any other i n d i v i d u a l therapy. Hiratzka (1985) reported that 69% of her sample had heard about l a e t r i l e but only three subjects added vitamin therapy to Hiratzka's l i s t of unproven therapies. In addition, no one i n Hiratzka's study i d e n t i f i e d f a i t h healing as an alt e r n a t i v e therapy. The three therapies that were recognized most frequently by the par t i c i p a n t s i n Hiratzka's study were ( i n descending order of frequency): l a e t r i l e , Greek cure, and carrot j u i c e d i e t . Obviously, f a i t h plays a s i g n i f i c a n t r o l e i n the cancer experience since so many patients are f a m i l i a r with f a i t h healing. Holland (1982) states that the prospect of uncontrollable or recurrent disease often produces a sense of helplessness and hopelessness, and consequently, many cancer patients "have a comforting b e l i e f that God or some philosophical benevolent force w i l l protect them,...they w i l l be miraculously saved" (p.11). Testimonials claiming that pure, simple f a i t h cured cancer make f a i t h healing and the healing powers of s p i r i t u a l i s t s i r r e s i s t i b l e to many cancer patients. I t i s also apparent that l a e t r i l e , which has been promoted since the e a r l y 1900s but remains i l l e g a l i n Canada, i s s t i l l a "cause celebre" (Janssen, 1979). Inglefinger (1977) contends that denunciation or p r o h i b i t i o n of l a e t r i l e " w i l l only swell the ranks clamoring for t h i s extract of apricot p i t s . Forbidden f r u i t s are mighty tasty, and e s p e c i a l l y to those who hope that a b i t e w i l l be l i f e - g i v i n g " (p.1168). Although f a i t h healing and l a e t r i l e continue to be two well-known unorthodox cancer remedies, differences i n awareness of other unproven therapies are evident. Two possible explanations f o r these differences are: 1) the popularity of s p e c i f i c unproven therapies changes over time and consequently, the therapies that p a r t i c i p a n t s i n Hiratzka's 1985 study recognized may not be " i n vogue" i n 1989. 2) the popularity of c e r t a i n unproven therapies may depend on t h e i r a c c e s s i b i l i t y and a v a i l a b i l i t y . Thus in d i v i d u a l s l i v i n g i n d i f f e r e n t countries, states, or provinces may be more cognizant of those therapies that are r e a d i l y attainable within t h e i r geographical region. I n c l i n a t i o n to Use Unproven Cancer Therapies In t h i s study, 28 subjects (70%) exhibited a strong i n c l i n a t i o n to use unproven cancer therapies. In f a c t , 18 partic i p a n t s (45%) had a c t u a l l y t r i e d an unproven therapy. Furthermore, eight subjects (20%) indicated that they would consider t r y i n g , and two other subjects (5%) had considered t r y i n g unproven cancer treatments. These findings were not su r p r i s i n g . From past experience i n caring f o r cancer patients, t h i s researcher believes that over 50% of cancer patients have t r i e d or at l e a s t considered t r y i n g an unorthodox cancer treatment at some time during the course of t h e i r disease. This study found that 45% of the study p a r t i c i p a n t s had t r i e d some type of unproven therapy. This f i n d i n g can be compared to the findings obtained by C a s s i l e t h and colleagues (1984). Of the 325 patients studied by Ca s s i l e t h and colleagues, 54% were using unorthodox treatments as well as re c e i v i n g conventional treatments. In contrast to the finding of t h i s study concerning the use of unproven therapies, Eidinger and colleagues (1984) found that only seven percent of t h e i r study part i c i p a n t s (N=315) had t r i e d some type of unproven cancer remedy. Hiratzka (1985) reported that 11% of study p a r t i c i p a n t s i n her study (N=108) had t r i e d an unorthodox cancer treatment. There are two possible explanations f o r the difference i n findings between t h i s study and the above two studies. F i r s t , the subjects i n the studies by Eidinger and colleagues (1984) and Hiratzka (1985) had fewer unproven therapies from which to choose - the former l i s t e d only three therapies and the l a t e r l i s t e d 16 unproven cancer therapies. This study provided the subjects with a l i s t of 27 unproven cancer therapies. Second, the studies by Eidinger and colleagues (1984) and Hiratzka (1985) surveyed patients with d i f f e r e n t types of cancer while t h i s study's p a r t i c i p a n t s were a l l diagnosed with lung cancer. I t i s possible that patients with d i f f e r e n t types of cancer and therefore, d i f f e r e n t prognoses may have d i s s i m i l a r opinions about the need to t r y unproven therapies. For example, patients with Hodgkins disease who are t o l d t h e i r cancer has a 95% cure rate may be less l i k e l y to t r y an unproven therapy than those patients who are t o l d they have an oat c e l l lung cancer and less than a 50% chance of surviving beyond one year from the time of diagnosis (Spiro, 1988, p.165). Mooney (1987) also found a low percentage of users i n her study: only 18% of patients with metastatic disease (N = 71) had used some form of unconventional therapy. One explanation f o r the difference between Mooney's study and t h i s study i s pl a u s i b l e . The subjects i n Mooney's study were inpatients i n an acute care hospital and consequently, access to and/or opportunity to use unproven cancer remedies may have been l i m i t e d . The subjects i n t h i s study were outpatients and therefore, unproven cancer therapies were undoubtedly easier to access and use. This study found that 70% of the pa r t i c i p a n t s exhibited a strong i n c l i n a t i o n to use unproven cancer therapies. Similar to t h i s finding, Eidinger and colleagues (1984), who asked 315 cancer patients " i f d i f f e r e n t kinds of treatments, eg. l a e t r i l e , etc., were a v a i l a b l e here [Saskatoon] would you t r y them?", reported that 70% of patients said that they would consider taking one of the forms of unconventional therapy. Although p e d i a t r i c oncology i s not p a r t i c u l a r l y comparable to adult oncology, the study by Faw and colleagues (1977) does provide some valuable insights into the use of unproven cancer therapies. Their study (1977) found that 39.1% of 69 p e d i a t r i c oncology patients had t r i e d , considered t r y i n g , or were recommended by s i g n i f i c a n t others to t r y unproven cancer remedies. In contrast to the findings of t h i s study concerning the degree of i n c l i n a t i o n to use, Hiratzka (1985) reported that only 27% of the subjects i n her study had a strong i n c l i n a t i o n to use unproven cancer therapies. One possible explanation for the d i f f e r e n t findings i s that subjects i n Hiratzka's study had fewer unproven therapies from which to choose and consequently, the therapies that the subjects may have been i n c l i n e d to use were not l i s t e d . Although physicians' attitudes were not explored i n t h i s research study, the subjects offered t h e i r perceptions regarding t h e i r physicians' attitudes toward the use of unproven cancer therapies. On numerous occasions during t h i s study, many subjects shared with the researcher t h e i r f r u s t r a t i o n i n dealing with doctors (and nurses) who refuse to acknowledge the existence of users or p o t e n t i a l users of unproven cancer therapies. Ten subjects believed that t h e i r doctors vehemently opposed t h e i r use of these therapies. In addition, 16 subjects expressed concern that the current issues surrounding the use of unproven therapies were often completely ignored by the health care professionals. The researcher was accustomed to hearing these comments from other cancer patients encountered during her c l i n i c a l experience. However, recent l i t e r a t u r e indicates that doctors are becoming interested i n discovering the scope of a l t e r n a t i v e treatment methods. R e i l l y (1983) surveyed 100 young interns i n family p r a c t i c e with regards to t h e i r attitude toward a l t e r n a t i v e medicine. Eighty-six had a p o s i t i v e attitude toward a l t e r n a t i v e medicine, and of these, 31 had r e f e r r e d patients f o r such treatment and 12 had made r e f e r r a l s to nonmedically q u a l i f i e d p r a c t i t i o n e r s . Furthermore, L i s t e r (1983) reported that 60.0% of unorthodox p r a c t i t i o n e r s i n his sample were physicians; and 30.0% of patients' conventional physicians supported the use of a l t e r n a t i v e treatments. It i s obvious from the r e s u l t s of t h i s study and previously conducted studies that the use of a l t e r n a t i v e cancer therapies i s indeed an issue f o r cancer patients. Many patients are users or p o t e n t i a l users of unproven cancer therapies even though the v e r d i c t concerning the e f f i c a c y of unproven treatments has not been reached. B e l i e f i n Control Lazarus and Folkman (1984b) s t i p u l a t e that "people vary i n the extent to which they believe they can control t h e i r fate, and that t h i s i n turn a f f e c t s t h e i r appraisal of threat and t h e i r e f f o r t s to cope,..." (p.299). The r e s u l t s of t h i s study showed that the majority of the study part i c i p a n t s exhibited an i n t e r n a l locus of control o r i e n t a t i o n . The ILOC scale had the highest mean of a l l three ori e n t a t i o n s . This finding i s consistent with findings obtained i n studies by Dodd (1983), Taylor and colleagues (1987), and Dirksen (1989). A l l of these studies found that the locus of control o r i e n t a t i o n i n cancer patients tended toward i n t e r n a l i t y . These findings imply that these cancer patients perceive the events that happen to them as being under t h e i r c o n t r o l . Examination of the i n d i v i d u a l scores on the three subscales of the MHLC disclosed that 16 subjects (42.1%), who scored high on the ILOC subscale, also scored high on e i t h e r the PLOC or CLOC subscale. These i n d i v i d u a l s were not "pure i n t e r n a l s " but exhibited both strong i n t e r n a l and external locus of contr o l orientations. Therefore, t h i s f i n d i n g implies that these cancer patients perceive the events that happen to them as being not only under t h e i r control but also under the control of others, or a matter of chance or fate. The findings of t h i s study concerning b e l i e f i n contr o l can be compared to studies by Brandt (1987) and H i l t o n (1987). Brandt (1987) found that the locus of control for 31 women rece i v i n g chemotherapy for breast cancer indicated a tendency toward e x t e r n a l i t y not i n t e r n a l i t y . These "externals" f e l t a sense of hopelessness, and believed that t h e i r actions would not change the outcome of t h e i r treatment. H i l t o n (1987) reported that most of the breast cancer patients i n her study (N=227) f e l t they had l i t t l e control over the cause of t h e i r cancer, and that they could not have prevented the growth of t h e i r cancer. Nonetheless, the women i n Hilton's study d i d f e e l they had control over recurrence and the course of t h e i r disease. 88 The Relationship Between B e l i e f i n Control and the Degree of I n c l i n a t i o n to Use Unproven Cancer Therapies In t h i s study, no s i g n i f i c a n t c o r r e l a t i o n was found between the degree of i n c l i n a t i o n to use and i n t e r n a l locus of control (ILOC) o r i e n t a t i o n (rho = 0.03, p = 0.42). This f i n d i n g was unexpected because the l i t e r a t u r e reports that cancer patients' need for personal control i s often an important fac t o r i n t h e i r decision to t r y an unproven therapy. In addition, the researcher's past experience i n caring f o r cancer patients l e d the researcher to believe that patients who judged themselves masters of t h e i r own destiny were more apt to consider using or use unproven cancer therapies. Only one study was found i n the l i t e r a t u r e that challenges the above findings. Hiratzka (1985) found a s i g n i f i c a n t r e l a t i o n s h i p between i n t e r n a l locus of c o n t r o l and i n c l i n a t i o n to use unproven therapies. Her study concluded that the higher ILOC score the more l i k e l y a p o s i t i v e attitude existed toward using unproven therapies. The unexpected r e s u l t s of t h i s study may be understood by examining the determinants of coping put f o r t h i n the conceptual framework that was u t i l i z e d i n t h i s study (Lazarus & Folkman's theory of s t r e s s , appraisal, and coping, 1984). According to t h i s theory, b e l i e f i n personal control i s always embedded i n a p a r t i c u l a r context of commitments and s i t u a t i o n a l demands, resources, and constraints (Lazarus & Folkman, 1984, p.301). Perhaps the cancer patients i n t h i s study, influenced by other person factors such as past experience, education, and s o c i a l i z a t i o n , t h e i r present health status, and/or s i t u a t i o n factors such as the a v a i l a b i l i t y of s o c i a l networks and support systems, appraised t h e i r cancer s i t u a t i o n as eit h e r a threat or a challenge. Consequently, regardless of t h e i r b e l i e f i n personal c o n t r o l , other person and/or s i t u a t i o n factors s i g n i f i c a n t l y effected the appraisal process and j u s t i f i e d the coping option of i n c l i n a t i o n to use unproven therapies. F i n a l l y , the use of these therapies was viewed as a v i a b l e coping strategy since i t might a l t e r the outcome of the p a r t i c i p a n t s ' disease. Although 95.0% of the study p a r t i c i p a n t s exhibited an i n t e r n a l locus of control o r i e n t a t i o n , only 24.0% (9 subjects) were strongly i n t e r n a l . The other 76.0% demonstrated that they were s i m i l a r i n strength on a l l three locus of control orientations or that they tended toward e x t e r n a l i t y . Consequently, these indiv i d u a l s cannot be l a b e l l e d "pure i n t e r n a l s " . These findings may help to explain the lack of s i g n i f i c a n t c o r r e l a t i o n between i n t e r n a l locus of control and i n c l i n a t i o n to use unproven cancer therapies. I t i s possible that some in t e r n a l s who tended toward e x t e r n a l i t y considered t h e i r cancer s i t u a t i o n so s t r e s s f u l that t h e i r own a b i l i t y to cont r o l t h e i r disease was inadequate. Consequently, they believed that powerful others and/or chance had some control over t h e i r cancer s i t u a t i o n . As a r e s u l t of t h i s b e l i e f , these i n d i v i d u a l s may have viewed the use of unproven therapies as unwarranted. Although not s t a t i s t i c a l l y s i g n i f i c a n t , low. negative co r r e l a t i o n s were found between the degree of i n c l i n a t i o n to use and Chance (CLOC) (rho = -0.09, p = 0.28) and Powerful Others (PLOC) (rho = -0.11, p = 0.23) locus of control orientations. The more the study p a r t i c i p a n t s tended toward e x t e r n a l i t y the less l i k e l y they were i n c l i n e d to use unproven cancer therapies. Three explanations for t h i s f i n d i n g are possible. F i r s t , the "externals" may cast the cancer physician i n the r o l e of powerful other and the oncologist may not approve of a l t e r n a t i v e therapies. Second, the individ u a l s who tended toward e x t e r n a l i t y may perceive the conventional treatment(s) as external forces rather than themselves and consequently, the use of unproven cancer therapies was unwarranted. F i n a l l y , the "externals" may believe that the consequences of t h e i r lung cancer were beyond t h e i r c o n t r o l , a matter of fate, and thus, the use of unproven cancer therapies was f u t i l e since i t would ultimately not a l t e r the disease outcome. The lack of variance between the PLOC and CLOC subscales indicates that there was l i t t l e v a r i a b i l i t y of scores within these two subscales with regards to t h e i r i n c l i n a t i o n to use unproven cancer therapies. This f i n d i n g suggests that i t d i d not matter i f these p a r t i c i p a n t s believed that t h e i r cancer s i t u a t i o n was " i n the hands of God" or fate, or under the control of powerful others - the use of unproven cancer therapies was not considered a r e a l i s t i c coping option. Commitment to L i f e According to the conceptual framework used i n t h i s study, the person factor of commitments expresses what has meaning for the i n d i v i d u a l and i s an antecedent to cognitive appraisal (Lazarus & Folkman, 1984). In t h i s study, 26 subjects (65%) scored greater than 113 on the Purpose i n L i f e scale which indicates a d e f i n i t e purpose and meaning to l i f e . H i l t o n (1987) also found that 65.0% of the subjects i n her study had a d e f i n i t e purpose and meaning i n l i f e . In addition, many popular books about the cancer experience (Simonton et a l . , 1974; Cousins, 1979; Dosdall, 1986; Siegal, 1986) a f f i r m that having a purpose i n l i f e or a " w i l l to l i v e " i s e s s e n t i a l to s u r v i v a l and to sustaining a q u a l i t y of l i f e . Only s i x subjects (15.0%) scored less than 91 which indicates a lack of c l e a r meaning and purpose i n l i f e . Three reasons for t h i s lack of c l e a r meaning i n l i f e are pl a u s i b l e . F i r s t , some of the par t i c i p a n t s may be unable to cope with the side e f f e c t s of treatment or with the many disturbing emotions such as depression, fear, despair and s e l f - p i t y that they have experienced since being diagnosed with lung cancer. As a r e s u l t of t h i s i n a b i l i t y to cope, hopelessness and helplessness ensues, and l i f e becomes meaningless. Second, 11 subjects stated that they were t o l d by t h e i r cancer doctor that t h e i r disease was not curable and consequently, b e l i e v i n g that death from t h e i r neoplasm was i n e v i t a b l e , some may have l o s t t h e i r " w i l l to l i v e " . Third, even though 30 pa r t i c i p a n t s (75%) believed that t h e i r cancer was curable, 13 participants (32.5%) were uncertain i f t h e i r oncologist had divulged any information about the prognosis of t h e i r disease. Thus, regardless of t h e i r personal b e l i e f s , the lack of communication with t h e i r physician about t h e i r prognosis may have caused some subjects to appraise t h e i r future as uncertain, lacking c l e a r d i r e c t i o n and purpose. The Relationship Between Commitment to L i f e and the Degree of I n c l i n a t i o n to Use Unproven Cancer Therapies A s i g n i f i c a n t c o r r e l a t i o n was not found between commitment to l i f e and the degree of i n c l i n a t i o n to use unproven cancer therapies. This f i n d i n g was unexpected because the researcher's past experience i n caring for cancer patients revealed that patients who set future goals and had "something to l i v e f o r " were more apt to investigate various types of unproven cancer therapies. Since t h i s r e l a t i o n s h i p has not previously been systematically explored, there i s no way of comparing the r e s u l t s of the c o r r e l a t i o n a l analysis obtained i n t h i s study. However, i t i s again possible that, regardless of the person factor of commitment to l i f e , the coping option of i n c l i n a t i o n to use unproven therapies was viewed as b e n e f i c i a l and r e a l i s t i c because use might change the disease outcome. Supplementary Objectives In t h i s section, discussion w i l l focus on the supplementary objectives of t h i s study: the types of unproven therapies i n c l i n e d to be used or used by the study p a r t i c i p a n t s , the source(s) of information, and the cost of the unorthodox cancer treatment methods that were used. In addition, a n c i l l a r y analyses between the variables of age, gender, marital status, and p a r t i c i p a n t s ' perceptions of intent of treatment(s) and awareness of and/or i n c l i n a t i o n to use unproven cancer therapies w i l l be discussed. Types of Unproven Cancer Therapies Inclined to be Used or Used by Cancer Patients In t h i s study, there were 13 unproven cancer therapies which scored a four or higher on the degree of i n c l i n a t i o n to use scale. The most popular was imagery which eight people had a c t u a l l y t r i e d and four who had e i t h e r considered t r y i n g or would consider t r y i n g at some time i n the future. Megadose vitamin therapy, f a i t h healing, and taheebo were the next three most popular therapies. This researcher was surprised that more people had not t r i e d imagery considering the attention and support that t h i s therapy i s receiving from both the public and the medical community. Many popular books (Simonton et a l . , 1974; P e l l e t i e r , 1977; F i o r e , 1981; Benson, 1984; Achterberg, 1985; Glassman, 1984; Dosdall, 1986; Siegal, 1986; Rossman, 1987) advise patients to use imagery, v i s u a l i z a t i o n , and r e l a x a t i o n as p o s i t i v e coping strategies void of side e f f e c t s . Numerous s c i e n t i f i c i n q u i r i e s (Redd, Anderson, & Minagawa, 1982; Morrow & M o r r e l l , 1982; Lyles, Burish, Krozely, & Oldham, 1982; Scott, Donahue, Mastrovito, & Hakes, 1983; Cotanch, Hockenberry, & Herman, 1985; Cotanch & Strum, 1987) have i d e n t i f i e d the e f f i c a c y of imagery, v i s u a l i z a t i o n , and r e l a x a t i o n i n reducing and/or c o n t r o l l i n g the adversiveness of cancer treatments and disease symptoms. There are three possible explanations f o r the l i m i t e d use of imagery. F i r s t , there continues to be c o n f l i c t surrounding the use of imagery at CCABC. For instance, the nursing department at CCABC has rece n t l y i n i t i a t e d an i n s t r u c t i o n a l program i n rela x a t i o n and imagery designed for groups even though a CCABC l i b r a r y manual emphatically states that the Simonton method which involves r e l a x a t i o n and mental imagery i s a d e f i n i t e r i s k . The manual of unproven methods of cancer treatment, which was put together by c l i n i c s t a f f , claims that patients who use imagery might abandon orthodox medical treatment even though they are discouraged from doing so by the s t a f f at the Centre (p.61). Second, although i n d i v i d u a l health care professionals promote imagery as an adjunct to conventional treatments, i t i s c o s t l y i n r e l a t i o n to time. Many health care providers, during the course of a busy day, do not have the time to i n s t r u c t i n d i v i d u a l patients i n imagery's proper use. Third, the majority of the par t i c i p a n t s i n t h i s study (57.5%) were not current l y re c e i v i n g any conventional treatment(s). Consequently, some patients who viewed imagery as adjunctive therapy may no longer consider i t as necessary because the conventional treatment(s) had been discontinued. The therapies which were commonly used i n t h i s study were also reported by other researchers. Faw and colleagues (1977) i d e n t i f i e d f a i t h healing as a frequently used a l t e r n a t i v e therapy. C a s s i l e t h and colleagues (1984) l i s t e d s i x types of unorthodox treatments that emerged as commonest among patients studied. In descending order of frequency of use these were: metabolic therapy, d i e t therapies, megavitamins, mental imagery, s p i r i t u a l or f a i t h healing and "immune" therapy (eg. autogenous vaccines). Eidinger & Schapira (1984) found that vitamins and sp e c i a l diets were considered by the study p a r t i c i p a n t s to be e f f e c t i v e i n curing cancer. Hiratzka (1985) reported that the s i x most frequently t r i e d unproven remedies were ( i n descending order): Greek cure, v i b r a t i n g machines, l a e t r i l e , coffee enemas, vitamin therapy, and chaparral tea. These r e s u l t s indicate that today's a l t e r n a t i v e treatments are anti-medicines. C a s s i l e t h (1982) states "[Alternative therapies] are anti-medicines, emphasizing p u r i f i c a t i o n through dietary regimens, d e t o x i f i c a t i o n and i n t e r n a l cleansing, or mind c o n t r o l " (p.1482). In addition, the commonly used therapies are natural, nontoxic, personalized, home- based alte r n a t i v e s that require active p a r t i c i p a t i o n by the patient. C a s s i l e t h (1982) proposes that something can be learned by examining the frequent use of these nontoxic, natural therapies. He concludes that: "We [physicians] may not wish to recommend wheatgrass or s p i r i t u a l healing i n l i e u of chemotherapy, but we might well consider the merits of patients' needs for involvement i n t h e i r own care, t h e i r i n t e r e s t i n helping themselves through attention to d i e t , t h e i r requirements f o r personalized attention to the s e l f as opposed to the disease,..." (p.1484). While many authors (Inglefinger, 1977; Burkhalter, 1977; Brown, 1978; Lehrer, 1979; Patrick, 1981; Holland, 1982; Glymour & Stalker, 1983) support the need f o r more active p a r t i c i p a t i o n by the patient i n health care, they argue that there i s no such thing as a safe, "nontoxic therapy". They present case studies i n which patients suffered p h y s i c a l , irreparable harm from vitamin overdose, i n t e r n a l d e t o x i f i c a t i o n , and from following grueling d i e t a r y regimens. Furthermore, these authors stress that many patients, who assume r e s p o n s i b i l i t y for t h e i r well-being which they believe i s mediated by t h e i r own behaviour and thoughts, must also assume the addi t i o n a l burden of g u i l t , they are responsible f o r having become i l l . Sources of Information about Unproven Cancer Therapies This study found that the media (books, magazines, newspapers, radio/TV) was the most common information source for the pa r t i c i p a n t s . Friends and/or r e l a t i v e s were the next most common sources of information about unorthodox treatments. Hiratzka (1985) also found the media to be the most frequent source of information about unproven methods with friends and/or r e l a t i v e s ranking second. Faw and colleagues (1977) found that well-meaning friends and r e l a t i v e s were most often named by patients as those who recommended these remedies. From these r e s u l t s , i t i s obvious that, depending upon the in d i v i d u a l ' s opinion about the use of unproven cancer therapies, the media and patients' s i g n i f i c a n t others may be e i t h e r f r i e n d or foe! Cost Seven patients indicated that the monthly cost of the unproven cancer therapy ranged from $20.00 to $400.00 (yearly cost range - $240.00 to $4800.00). Only one study was found i n the l i t e r a t u r e that examined the cost of a l t e r n a t i v e treatments. C a s s i l e t h and colleagues (1984) reported that the cost of these therapies was r e l a t i v e l y modest, with most people spending under $1000.00 for the f i r s t year of treatment. However, they d i d f i n d that some patients were paying more than $5000.00 per year f o r c e r t a i n therapies such as d i e t s , megavitamins, metabolic regimens, and "immune" therapy. In f a c t , i t has been estimated that the public spends i n excess of two b i l l i o n d o l l a r s annually on unorthodox cancer treatments (Gardner, 1980; CCABC, 1987). Fortunately for the participants i n t h i s study who were users of unproven therapies, the cost of the therapies was modest. Nevertheless, the use of s p e c i f i c unproven therapies can be expensive. This expense may become a economic hardship for many cancer patients. A n c i l l a r y Analyses A n c i l l a r y analyses focused on the r e l a t i o n s h i p s between the variables of age, gender, marital status, and p a r t i c i p a n t s ' perceptions of intent of treatment(s) and awareness of and/or i n c l i n a t i o n to use unproven cancer therapies. In t h i s study, a negative c o r r e l a t i o n was found between age and the degree of i n c l i n a t i o n to use unproven therapies (r = -0.28, p = 0.04). The younger lung cancer patients were more apt to consider or to t r y an unorthodox therapy. This strong i n c l i n a t i o n to use unproven cancer therapies by young in d i v i d u a l s was also found by Faw and colleagues (1977) i n t h e i r study of 69 p e d i a t r i c oncology patients. These researchers found that 27 patients (39.1%) had t r i e d , considered, or received recommendations to t r y unproven remedies. In contrast to these findings, Hiraztka's study (1985) di d not f i n d any s i g n i f i c a n t difference i n the degree of i n c l i n a t i o n to use unorthodox treatments among the three age groups i n her sample (range - 20 to >60 years). I t i s apparent that the s i g n i f i c a n c e between age and propensity to use a l t e r n a t i v e cancer treatments remains debatable. Nonetheless, as people are educated i n health promotion and disease prevention, young persons are becoming more aware of the r o l e of exercise, n u t r i t i o n , heredity, personality, environment, and l i f e s t y l e i n the maintenance of well-being and i n the provision of health care to the whole person. In addition, many authors ( P e l l e t i e r , 1977; Fiore, 1981; West & I n g l i s , 1983; Benson, 1984; Achterberg, 1985; Wurtman, 1986; Dosdall, 1986; Siegal, 1986; Rossman, 1987) suggest that the public i s beginning to d r i f t away from the medical establishment, with increasing b e l i e f i n a l t e r n a t i v e medicine, because physicians employ a purely s c i e n t i f i c approach to h e a l t h / i l l n e s s . C a s s i l e t h (1982) maintains that i n t e r e s t i n a l t e r n a t i v e treatments "arises i n the context of increasing mistrust and d i s s a t i s f a c t i o n with the standard health-care system and with researchers' f a i l u r e to cure malignant disease" (p.1483). Glymour and Stalker (1983) argue that the increasing public support of a l t e r n a t i v e medicine "... i s no reason to take i t s claims seriously; s u p e r s t i t i o n , s e l f - deception, s t u p i d i t y , and fraud are ubiquitous and always have been" (p.962). This negative view of unproven therapies i s supported by many health care professionals. Another fi n d i n g of t h i s study was that 30 subjects (75%) believed that t h e i r cancer was curable. This b e l i e f i n cure was not su r p r i s i n g considering that the majority of par t i c i p a n t s had a strong commitment to l i f e , a strong " w i l l to l i v e " . However, a s i g n i f i c a n t r e l a t i o n s h i p was not found between intent of treatment(s) (cure versus p a l l i a t i v e ) and i n c l i n a t i o n to use. This f i n d i n g suggests that the p a r t i c i p a n t s ' b e l i e f i n cure was not a factor r e l a t e d to i n c l i n a t i o n to use unproven cancer therapies. Summary This chapter began with a report of the demographic and health c h a r a c t e r i s t i c s of the study's sample. The majority of the sample (57.5%) were not rec e i v i n g any current conventional treatment(s) but were being followed by t h e i r c l i n i c physician. Only 12 patients (30.0%) were undergoing active treatment(s) while f i v e patients (12.5%) were being p a l l i a t e d with medications for eithe r disease progression or recurrence. Ov e r a l l , the majority of partic i p a n t s i n t h i s study had heard of at lea s t f i v e unproven cancer therapies, and exhibited a strong i n c l i n a t i o n to use unorthodox cancer remedies. The most commonly used therapies were anti-medicines - imagery, megadose vitamin therapy, f a i t h healing, and taheebo. Although the majority of study p a r t i c i p a n t s exhibited an i n t e r n a l locus of control o r i e n t a t i o n and a strong commitment to l i f e , s i g n i f i c a n t c o r r e l a t i o n s were not found between b e l i e f i n c o n t r o l , commitment to l i f e , and the degree of i n c l i n a t i o n to use unproven cancer therapies. The conceptual framework used i n t h i s study, Lazarus and Folkman's theory of stress, appraisal and coping (1984), was useful i n explaining these unexpected findings. The theory suggests that other factors such as the cancer s i t u a t i o n , the p a r t i c i p a n t s ' environmental resources, and coping constraints may prompt many patients to view use of unproven therapies as a v i a b l e coping option. Consequently, the use of unproven therapies becomes an acceptable coping strategy. Subjects offered three explanations for the use of these unorthodox cancer methods. These explanations were: the therapy was recommended to them; they believed i n the e f f i c a c y of the therapy; and the therapy was an adjunct to the conventional treatment(s) they were receiving. Twelve patients (30.0%) demonstrated a minimal degree of i n c l i n a t i o n to use unproven cancer treatments. These indivi d u a l s were s k e p t i c a l about the effectiveness of the therapies, and maintained that more s c i e n t i f i c information was imperative before they would consider t r y i n g any of the therapies on the l i s t . The cost per month for these therapies ranged from zero to 400 d o l l a r s . The media and friends and/or r e l a t i v e s were the two most common sources of information about the unproven cancer therapies. A negative c o r r e l a t i o n was found between i n c l i n a t i o n to use unproven therapies and age. The younger cancer patients were more apt to have a strong i n c l i n a t i o n to use unorthodox cancer remedies. The r e s u l t s of t h i s study indicated that the use of unproven cancer therapies i s indeed an important issue f o r many cancer patients. The findings of the study were discussed i n r e l a t i o n to the conceptual framework, other research studies found i n the l i t e r a t u r e , and the methodological problems inherent 106 i n the study. c CHAPTER FIVE Summary, Conclusions, Implications, and Recommendations Introduction This study was designed to explore the association between b e l i e f i n con t r o l , commitment to l i f e , and the degree of i n c l i n a t i o n to use unproven cancer therapies. In addition, the study examined the various reasons why some people considered using and/or used unproven therapies while others were non- users . An overview of the study i s presented i n t h i s chapter followed by conclusions, and implications for nursing p r a c t i c e , research, education, and theory. Summary A review of the l i t e r a t u r e suggests that a cancer patient's b e l i e f i n personal control and commitment to l i f e may influence q u a l i t y of l i f e , f e e lings of well-being, length of s u r v i v a l , and the degree of i n c l i n a t i o n to use of unproven cancer therapies. Only one study was found that explored the r e l a t i o n s h i p between b e l i e f i n control and the degree of i n c l i n a t i o n to use unproven therapies. Hiratzka (1985) reported that cancer patients who exhibited an i n t e r n a l locus of control o r i e n t a t i o n were i n c l i n e d to use unorthodox cancer remedies. Research has not addressed the association between commitment to l i f e and the degree of i n c l i n a t i o n to use unproven cancer therapies. Therefore, t h i s study was designed to address the gaps i d e n t i f i e d i n the l i t e r a t u r e . This d e s c r i p t i v e and c o r r e l a t i o n a l study was conducted i n Vancouver, B r i t i s h Columbia. Data were c o l l e c t e d from a convenience sample of 40 lung cancer patients who were currently attending the ambulatory care department at the A. Maxwell Evans C l i n i c at the Cancer Control Agency of B r i t i s h Columbia. A l l subjects completed Wallston's Multidimensional Health Locus of Control Scale (MHLC), Crumbaugh's Purpose i n L i f e Scale (PIL), Hiratzka's A l t e r n a t i v e Therapy Scale (ATS), and a patient information sheet. Limited data were also gathered from the p a r t i c i p a n t s ' medical records. The data were analyzed using descriptive s t a t i s t i c s and nonparametric s t a t i s t i c a l t e s t s . Twenty-six subjects were male and 14 subjects were female. Ages ranged from 34 to 79 (M = 60) years. The majority of the p a r t i c i p a n t s (75.0%) were married. The number of months since diagnosis ranged from 1.5 to 50.0 months with the majority of subjects being s i x months or less from i n i t i a l diagnosis. The large s t percentage of subjects (55.0%) had c l i n i c a l evidence of metastatic disease at the time of diagnosis. A l l 40 subjects had a h i s t o r y of smoking. Twenty-three subjects (57.5%) were not r e c e i v i n g any current treatment(s) but were being followed by t h e i r c l i n i c physician. Only 12 subjects (30.0%) were undergoing active, conventional treatment(s), and f i v e (12.5%) were being p a l l i a t e d with medications for e i t h e r disease progression or recurrence. F i f t y - f i v e percent of the subjects had been treated previously with both chemotherapy and radiotherapy for t h e i r neoplasm. Time since previous treatment(s) ranged from 1 to 46 months (M = 10.7). The p a r t i c i p a n t s awareness of unproven cancer therapies scores ranged from 1 to 13 (mode = 5). From the l i s t of 27 therapies, 22 subjects (55.0%) had heard of s i x or more of the therapies on the l i s t . The therapies most frequently heard about were f a i t h healing, l a e t r i l e , and megadose vitamin therapy. The media and friends and/or r e l a t i v e s were the most common sources of information about unproven cancer treatment methods. Seventy percent of the sample exhibited a strong i n c l i n a t i o n to use unproven cancer therapies. In f a c t , 45 percent (28 subjects) had a c t u a l l y t r i e d one or more unproven therapy. There were 13 unproven therapies which the par t i c i p a n t s were i n c l i n e d to use. Imagery was the therapy that the parti c i p a n t s most often used or considered using, followed by megadose vitamin therapy, f a i t h healing, and taheebo. These al t e r n a t i v e s can be c l a s s i f i e d as anti-medicines which are natural, nontoxic, and require active p a r t i c i p a t i o n by the patient. A trend toward a n t i - medicines was reported i n the l i t e r a t u r e . The r e s u l t s of t h i s study showed that the majority of the study participants exhibited an i n t e r n a l locus of control o r i e n t a t i o n . However, 29 out of the 38 subjects who were i n t e r n a l l y locused also exhibited a strong external locus of control o r i e n t a t i o n . Therefore, i t appears that these cancer patients saw themselves as well as others or fate c o n t r o l l i n g t h e i r cancer s i t u a t i o n rather than themselves alone or others alone. No s i g n i f i c a n t c o r r e l a t i o n was found between an i n t e r n a l locus of control o r i e n t a t i o n and i n c l i n a t i o n to use unproven therapies. This f i n d i n g suggests that an i n t e r n a l locus of control o r i e n t a t i o n i s not rela t e d to i n c l i n a t i o n to use unproven cancer therapies. Furthermore, the lack of s i g n i f i c a n t c o r r e l a t i o n may be rela t e d to the fin d i n g that many internals tended toward e x t e r n a l i t y . These "internal-externals", faced with the stress of cancer, may have viewed t h e i r a b i l i t y to control t h e i r cancer s i t u a t i o n as inadequate. As a r e s u l t , they may have believed that God, fate, or powerful others also had some control i n t h e i r s i t u a t i o n . This b e l i e f may have caused these "internal-external" i n d i v i d u a l s to consider the use of unorthodox cancer remedies as unnecessary. The r e s u l t s of t h i s study showed that the majority of the participants exhibited a strong commitment to l i f e . Undoubtedly, t h i s strong commitment to l i f e influenced t h e i r b e l i e f i n cure: 75% of the partic i p a n t s believed that t h e i r cancer was curable. However, no s i g n i f i c a n t associations were found between commitment to l i f e , b e l i e f i n cure, and i n c l i n a t i o n to use. These fi n d i n g suggests that the p a r t i c i p a n t s ' " w i l l to l i v e " or commitment to l i f e was not re l a t e d to t h e i r i n c l i n a t i o n to use unproven cancer therapies. Lazarus and Folkman's (1984) theory of st r e s s , appraisal, and coping was u t i l i z e d to explain the lack of s i g n i f i c a n t associations between the degree of i n c l i n a t i o n to use unproven therapies, b e l i e f i n c o n t r o l , and commitment to l i f e . The theory suggests that other factors such as the cancer s i t u a t i o n , the a v a i l a b i l i t y of support networks, and various coping constraints may motivate some cancer patients to perceive use of unproven remedies as a v i a b l e coping strategy. A s i g n i f i c a n t negative c o r r e l a t i o n was found between age and i n c l i n a t i o n to use unproven therapies and age (rho = -0.28, p = 0.04). The younger pa r t i c i p a n t s were more i n c l i n e d to use unproven cancer therapies. Conclusions Due to the small sample s i z e , the researcher's i n a b i l i t y to access lung cancer patients attending the radiotherapy follow-up c l i n i c , and the non-random nature of the sampling procedure, the r e s u l t s of t h i s study cannot be generalized. However, the findings of t h i s study suggest some s i m i l a r i t i e s , d i f ferences, and trends. Ov e r a l l , lung cancer patients are cognizant of several unproven cancer therapies and ex h i b i t a strong i n c l i n a t i o n to use such therapies. As a r e s u l t , many consider t r y i n g or t r y various unorthodox treatments. Age seems to be associated with i n c l i n a t i o n to use i n that the older lung cancer patients are less l i k e l y to t r y an unorthodox cancer therapy. However, an i n t e r n a l locus of co n t r o l , b e l i e f i n cure, and a strong commitment to l i f e do not appear to be factors r e l a t e d to i n c l i n a t i o n to use unproven therapies. The degree of i n t e r n a l i t y and other factors such as the cancer experience, the presence of support systems and other environmental resources, as well as coping constraints may prompt some cancer patients to view the use of unorthodox cancer methods as a v i a b l e and r e a l i s t i c coping option. This perspective may lead some patients to t r y some type of unproven cancer therapy as a coping strategy. Implications for Nursing Practice The findings of t h i s study suggest f i v e major implications for nursing p r a c t i c e . F i r s t , nurses are often involved i n the implementation of educational, supportive, and r e h a b i l i t a t i v e programs to cancer patients and to the community. T r a d i t i o n a l l y , the approach to these programs has not incorporated discussions about the use of unproven cancer remedies despite the fact that many cancer patients view the use of these therapies as acceptable. Thus, educational programs should provide f a c t u a l information and c l a r i f y misconceptions about the various treatments that have not been approved through s c i e n t i f i c means. Moreover, educational approaches must recognize, encourage, and incorporate an a c t i v e , p a r t i c i p a t i v e r o l e for patients, e s p e c i a l l y young patients, and t h e i r s i g n i f i c a n t others i n the learning process. Second, the nursing process must focus on a s s i s t i n g the i n d i v i d u a l to cope with the c h r o n i c i t y of the disease. Nursing assessments must determine the patient's understanding of cancer and i t s treatments, both conventional and a l t e r n a t i v e . Care planning and interventions must concentrate on the whole person. Attention to a l l aspects of the person and active p a r t i c i p a t i o n are important c h a r a c t e r i s t i c s of many popular a l t e r n a t i v e treatments. Therefore, nursing care designed to care fo r the whole person ensures personalized care, and promotes active p a r t i c i p a t i o n of the patient i n decision-making and care planning. As a r e s u l t , the appeal of the unorthodox p r a c t i t i o n e r may be reduced (Burkhalter, 1978), and/or the person's q u a l i t y of l i f e may improve regardless of the treatment method(s) chosen. Third, newspapers and magazines, t e l e v i s i o n t a l k shows, and news reports could be used by the nursing profession to keep the public informed of the benefits of conventional cancer care as well as the negative and p o s i t i v e aspects of a l t e r n a t i v e cancer treatments. In addition, use of the media could be an excellent way for the nursing profession to keep the community informed of the appropriate and correct use of unproven cancer remedies. Fourth, nurses need to communicate to other nurses, cancer patients, and the general public the d e t a i l s surrounding the use of popular a l t e r n a t i v e methods and the promoters of unorthodox treatments. Receipt of information reduces ambiguity, mystery, and secrecy (Patrick, 1981). Likewise, nurses need to be able to communicate to physicians the patients' questions and concerns about both orthodox and unorthodox cancer treatment methods. As patient advocates, nurses may be h e l p f u l i n eliminating or diminishing the patients' feelings of g u i l t , uncertainty, self-blame, and confusion that often surround the use of unproven therapies. Consequently, t r u s t and support i n making informed choices may increase, and the need to seek unproven alt e r n a t i v e s may decrease (Patrick, 1981). Moreover, nurses who are knowledgeable about the popular therapies w i l l be i n a better p o s i t i o n to educate the public on the dangers inherent i n using c e r t a i n therapies, and to lobby the government to l e g i s l a t e against l e g a l i z i n g p o t e n t i a l l y harmful unproven therapies. F i n a l l y , on numerous occasions during t h i s study, many patients shared with the researcher t h e i r f r u s t r a t i o n i n dealing with health care providers who refuse to acknowledge the existence of users or p o t e n t i a l users of unproven cancer therapies. Likewise, the current issues surrounding the use of unproven therapies were often completely ignored. Thus, nurses who provide care to cancer patients must examine t h e i r own b e l i e f s and values about the use of unproven cancer therapies. Value c l a r i f i c a t i o n i s c r u c i a l to oncology nurses' a b i l i t y to provide h o l i s t i c care to those patients who may be considering or using unproven therapies. In addition, value c l a r i f i c a t i o n i s e s s e n t i a l f o r nurse administrators since i t i s often these i n d i v i d u a l s who e s t a b l i s h the p o l i c i e s pertaining to which unproven therapies, i f any, w i l l be supported, accepted, and/or promoted by the nursing department. Implications for Nursing Education Pa t r i c k (1981) emphasizes "for the nurse to knowledgeably i n t e r a c t with the c l i e n t i n reference to quackery, i t i s v i t a l that the helper receive education on the topic" (p.369). Therefore, the nurse must keep abreast of al t e r n a t i v e approaches to cancer treatment through self-education e f f o r t s . In addition, the nursing profession and the cancer care community have the professional r e s p o n s i b i l i t y to update nurses on the current unorthodox therapies and the many issues surrounding t h e i r care. Implications for Nursing Research This study raises many questions for further research concerning unproven cancer therapies. Studies need to be conducted to i d e n t i f y variables of importance that influence people to think about and/or use a l t e r n a t i v e therapies. This study needs r e p l i c a t i o n with a larger sample i n order to i d e n t i f y the influence of control and commitment for not only those with cancers which have a generally poor prognosis but also f o r those with cancers which have a better prognosis. The influence of variables within the person, within the s i t u a t i o n , and also resources and constraints to appraisal and coping need to be explored. Person variables include c u l t u r a l and r e l i g i o u s b e l i e f s . Situation factors include disease status and time since diagnosis. Resources and constraints to coping include age, gender, education, socio-economic status, promotional methods used by unorthodox p r a c t i t i o n e r s , and discouragement p r a c t i c e s . According to Lazarus and Folkman (1984b), s o c i a l support as a coping resource i s at l e a s t p a r t l y c o r r e l a t e d with coping competence (p.296). In t h i s study and i n previous studies, family, friends, and/or r e l a t i v e s were i d e n t i f i e d as the i n d i v i d u a l s who frequently recommended unorthodox remedies to the cancer patients. Further research i s needed to explore the r o l e of these s i g n i f i c a n t others i n the decision-making process. Better understanding of the influence of s i g n i f i c a n t others i n the decision to use unproven cancer therapies i s e s s e n t i a l so that the nurse w i l l be i n a better p o s i t i o n to involve these i n d i v i d u a l s appropriately i n the planning and intervention phases of the nursing process. F i n a l l y , studies should be conducted to measure the health care professional's knowledge and attitudes toward unproven cancer therapies. Perhaps these studies would i d e n t i f y personal l i m i t a t i o n s and knowledge d e f i c i t s , and consequently, the cancer care community would be better able to meet the educational and support needs of both patients and care givers. Implications for Nursing Theory In t h i s study two hypotheses were proposed to examine the rel a t i o n s h i p s that may e x i s t i n r e a l i t y between b e l i e f i n c o n t r o l , commitment to l i f e , and i n c l i n a t i o n to use unproven cancer therapies. Both person factors, b e l i e f i n control and commitment to l i f e , have been reported i n the l i t e r a t u r e as variables that may influence cancer patients' decision to use unorthodox remedies. Although t h i s study d i d not f i n d s i g n i f i c a n t r e l a t i o n s h i p s between these two person factors and i n c l i n a t i o n to use, i t d i d demonstrate that these variables are important to consider i n appraisal and decision-making. I t i l l u s t r a t e s that other variables i n the person and the s i t u a t i o n are s i g n i f i c a n t and may have more impact when considering a s i t u a t i o n where the prognosis i f f a i r l y poor but hope i s high. Therefore, other factors need to be examined i n order to any draw conclusions about cancer patients who are i n c l i n e d to use or use unproven cancer therapies. The conceptual framework used i n t h i s study, Lazarus and Folkman's cognitive theory of psychological stress and coping (1984), was appropriate. This theory provided a p r a c t i c a l and comprehensive way to examine the study v a r i a b l e s . 121 References Achterberg, J . (1985). Imagery i n healing: Shamanism and modern medicine. Boston: New Science Library. American Cancer Society (1977). L a e t r i l e : Background information. New York: The Author. Benson, H. (1984). Beyond the relax a t i o n response. New York: Times Books. Brandt, B.T. (1987). The r e l a t i o n s h i p between hopelessness and selected variables i n women rece i v i n g chemotherapy for breast cancer. ONF, 14(2), 35-39. Behney, C. (1987). Facts concerning OTA's study of unorthodox cancer treatments. Cancer V i c t o r s Journal, 21(3&4), 4-5. Brigden, M. (1987, Jan.) Unorthodox therapy and your cancer patient. Postgraduate Medicine, 81(1), 271-280. Brockopp, D., Hayko, R., Winscott, C., & Davenport, W. (1988). Relationship between perceptions of personal control and the psychosocial needs i n adults with cancer. Proceedings of the 13th Annual Congress of the Oncology Nursing Society, Abstract No. 59. Brown, H. (1977). Quackery the dreadful delusion Proceedings of the 2nd National Conference on Cancer Nursing of the American Cancer Society (pp. 104-106). New York: American Cancer Society, Inc. Brown, H. (1975, May). Cancer quackery what can you do about i t ? Nursing 75, 24-26. Burkhalter, P. (1977, March). Cancer quackery. AJN, 451-453. Burkhalter, P. (1978). Cancer quackery: what you need to know. In P. Burkhalter & D. Donley (Eds.), Dynamics of oncology nursing (pp. 428-441). New York: McGraw-Hill Book Co. Burns, N., & Grove, S. K. (1987). The p r a c t i c e of nursing research: Conduct, c r i t i g u e and u t i l i z a t i o n . Philadelphia: W. B. Saunders Co Caiman, K., & Paul, J. (1978). An introduction to cancer medicine. London: The MacMillan Press Canadian Cancer Society. (1988). Canadian Cancer S t a t i s t i c s . Toronto, Canada: The Author. Cancer Control Agency of B r i t i s h Columbia (1987). Unproven Cancer Therapy. Vancouver, B.C.: The Author. Cancer Control Agency of B r i t i s h Columbia (1987b). Unproven methods of cancer treatment; A manual for patients. Vancouver, B.C.: The Author. Cancer Control Agency of B r i t i s h Columbia (1987c). B.C. Cancer S t a t i s t i c s . Vancouver: The Author. C a s s e l i t h , B. (1982). A f t e r l a e t r i l e , what? N Engl J Med.. 306. 1482-4. Ca s s i l e t h , B. R., Lusk, E. J . , & Strouse, T. B. (1984). Contemporary unorthodox treatments i n cancer medicine: a study of patients, treatments, and p r a c t i t i o n e r s . Ann Intern Med, 101(1), 105-12. Conover, J. (1980). Non-Parametric S t a t i s t i c s . New York: Wiley & Sons. Cotanch, P., Hockenberry, M., & Herman, S. (1985). Self-hypnosis as antiemetic therapy i n c h i l d r e n r e c e i v i n g chemotherapy. ONF, 12.(4), 41-46. Cotanch, P., & Strum, S. (1987). Progressive muscle relaxa t i o n as antiemetic therapy f o r cancer patients. ONF. 14(1), 33-37. Cousins, N. (1979). Anatomy of an i l l n e s s as perceived by the patient. New York: Bantam Books. Crumbaugh, J.C. (1968). Cross-validation of purpose i n l i f e t e s t based on Frankl's concepts. Journal of Individual Psychology, 24, 74-81. Dennis, K. (1987). Dimensions of c l i e n t c o n t r o l . Nursing Research, 36(3), 151-155. Dickson, A.C., Dodd, M.J., C a r r i e r i , V., & Levenson, H. (1985, May/June). Comparison of a cancer- s p e c i f i c locus of control and the multidimensional health locus of control scales i n chemotherapy patients. ONS, 12.(3), 49-54. Dirksen, S. (1989). Perceived well-being i n malignant melanoma survivers. ONF, 16.(3), 353-357. Dodd, M. J. (1983, May). Patterns of s e l f - c a r e i n patients with breast cancer receiving chemotherapy. Paper presented at the Eighth Annual Congress of the Oncology Nursing Society, San Diego, CA. Dodd, M., Ahmed, N., Lindsey, A., & Piper, B. (1985, October). Attitudes of patients l i v i n g i n Egypt about cancer and i t s treatment. Cancer Nursing. 8(5), 278-284. Dosdall, C. (1986) My God, I though you'd died. Toronto: McClelland & Stewart-Bantam Ltd. Eidinger, R., & Schapira, D. (1984, June). Cancer patients' insight into t h e i r treatment, prognosis, and unconventional therapies. Cancer. 53(12), 2736-2740. Evers, M. (1987). OTA agrees to assess nontraditional cancer treatments f o r congress. Cancer Vi c t o r s Journal. 21(3&4), 2-3. Faw, C , Ballentine, R., Ballentine, L., vanEys, J. (1977). Unproved cancer remedies - a survey of use i n p e d i a t r i c outpatients. JAMA. 238(14), 1536-1538. Fiore, N.A. (1981). The road back to health: Coping with the emotional side of cancer. New York: Bantam Books, Inc. Gardner, K. (1980, September). Hope, quackery, and orthodox health research. Annals of Internal Medicine. 9_3(3), 503-504. Glass, G., & Hopkins, K. (1984) S t a t i s t i c a l methods i n education and psychology. New Jersey: Prentice-Hall Inc. Glassman, J . (1984). The cancer survivors: How they di d i t . New York: Doubleday. Glucksberg, H. (1980). Cancer care: A personal guide. Baltimore: John Hopkins Univ e r s i t y Press. Glymour, C , & Stalker, D. (1983). Engineers, cranks, physicians, magicians. N Enq J Med.. 308. 960-963. H a l l a l , J. (1982). The r e l a t i o n s h i p of health b e l i e f s , health locus of control and s e l f concept to the practice of breast self-examination i n adult women. Nursing Research. 31(3), 137-142. H i l t o n , A. (1987). Coping with the uncertainties of breast cancer: Appraisal and coping s t r a t e g i e s . Unpublished doctoral d i s s e r t a t i o n , U n i v e r s i t y of Texas at Austin. Hiratzka, S. (1985). Knowledge and attitudes of persons with cancer toward use of unproven treatment methods. ONS, 12(1), 36-41. Holland, J. (1982). Why patients seek unproven cancer remedies: A psychological perspective. CA, 32(1), 10-15. Howard-Ruben, J . , & M i l l e r , N. (1984). Unproven methods of cancer management part I I : Current trends and implications for patient care. ONS, 11(1), 67-73. Inglefinger, F.J. (1977). Laetrilomania. N Eng J Med.. 296. 1167-8. Jamison, R., Lewis, S., & Burish, T. (1986). Psychological impact of cancer on adolescents: Self-image, locus of c o n t r o l , perception of i l l n e s s and knowledge of cancer. J. Chronic Diseases. 39(8), 609-617. Janssen, W. (1979, December). Cancer quackery The past and the present. Seminars i n Oncology. 6(4), 526-536. Kerber, A. (1987). Locus of c o n t r o l , hope, and disease-free i n t e r v a l . (From ONS Abstracts. 1987, 14* Abstract No. 137). Kesselring, A., Dodd, M., & Strauss, A. (1986, October). Attitudes of patients l i v i n g i n Switzerland about cancer and i t s treatment. Cancer Nursing. 9.(2), 77-85. Lazarus, R. S., & Folkman, S. (1984). Stress. appraisal and coping. New York: Springer Publishing Co. Lazarus, R.S., & Folkman, Susan (1984b). Coping and adaptation. In W.D. Gentry (Ed.) Handbook of Behavioural Medicine. New York: G u i l f o r d Press. Lefcourt, H. M. (1966). Internal versus external control of reinforcement: A review. 128 Psychological B u l l e t i n . j65(4), 206-220. Lehrer, S. (1979). Al t e r n a t i v e treatments f o r Cancer. Chicago: Nelson-Hall Inc. L e v i t t , P., Guralnick, E., Kagan, A., & Gilbert,H. (1979). The cancer reference book: Direct and c l e a r answers to everyone's questions. New York: Delta Publishing Company Inc. Lewis, F. (1982). Experienced personal c o n t r o l and q u a l i t y of l i f e i n late-stage cancer patients. Cancer Nursing. 31(2), 113-119. L i s t e r , J . (1983). Current controversy on a l t e r n a t i v e medicine. N Engl J Med.. 309, 1524-1527. Lyles, J . , Burish, T., Krozely, M, & Oldham, R. (1982). E f f i c a c y of relaxation t r a i n i n g and guided imagery i n reducing the adversiveness of cancer chemotherapy. J Consult C l i n Psychol. 50(4), 509-529. MacDonald, A.M. (Ed.) (1972). Webster's Dictionary. New York: Pyramid Communications. Martin, D.S. (1977). L a e t r i l e — A dangerous drug. Cancer, 27, 301-304. Martin, D. S., S t o l f i , R. L., & Sawyer, R. C. (1983, Feb.). Ineffective cancer therapy: A 129 guide f o r the layperson. Journal of C l i n i c a l Oncology. 1(2), 154-163. McNaull, F.W. (1985). The s o c i a l and economic costs of cancer. In S.C. Gross & S. Garb (Eds.) Cancer Treatment and Research i n Humanistic Perspective (pp. 94-103). New York: Springer Publishing Co. Meier, A., & Edwards, H. (1974). Purpose-in-life t e s t : Age and sex differences. Journal of C l i n i c a l Psychology. 30. 384-386. M i l l e r , J.F. (1983). Coping with chronic i l l n e s s . Philadelphia: F.A. Davis Co. M i l l e r , M., & Nygren, C. (1978, August). L i v i n g with cancer - coping behaviours. Cancer Nursing. 297-302. M i l l e r , N., & Howard-Ruben, J. (1983). Unproven methods of cancer management part I: Background and h i s t o r i c a l perspectives. QNS, 10(4), 46-52. Mi n i s t r y of Health (1987). Province of B.C. d i v i s i o n of v i t a l s t a t i s t i c s annual report. Vancouver: The Author. Mooney, K. (1987). Unproven cancer treatment usage i n cancer patients who have received 130 conventional therapies. (From ONS Abstracts, 1987, 14/ Abstract No. 124A) Morrow, G., & Mo r r e l l , C. (1982). Behavioural treatment for the anticipatory nausea and vomiting induced by cancer chemotherapy. New Eng J Med. 307.(24), 1476-1480. Nagy, V. T., & Wolfe, G. R. (1983). Chronic i l l n e s s and health locus of control b e l i e f s . Journal of S o c i a l and C l i n i c a l Psychology. 1(1)/ 58-65. Noble, M.C. (1988). Unprincipled treatments f o r cancer. BC Medical Journal. 30(1) 28-30. Oldham, R. (1985). Whose ri g h t s come f i r s t ? Journal of B i o l o g i c a l Response Modifiers. 4./ 211-212. Owen, D. (1989). Nurses' perspectives on the meaning of hope i n patients with cancer - a q u a l i t a t i v e study. ONF, 16(1), 75-79. Patrick, P. (1981). Cancer quackery: Information, issues, r e s p o n s i b i l i t y , action. In L.B. Marino (Ed.), Cancer Nursing (pp. 357-370). St. Louis: C.V. Mosby Co. P e l l e t i e r , K. (1977). Mind as healer, mind as slayer. New York: D e l l Publishing Co. Phares, E.J. (1973). Locus of c o n t r o l : A personality determinant of behaviour. New Jersey: General Learning Press. Phares, E.J. (1976). Locus of Control i n Personality. New Jersey: General Learning Press. P i t a r d , C. (1985). B i o l o g i c a l s and b i o l o g i c a l response modifiers: Agents with multiple uses i n changing environment now the fourth modality of cancer treatment. Phoenix: The Author. P r e s i d e n t i a l I n i t i a t i v e (1986, D e c ) . The Wall Street Journal, p.10. Redd, W., Anderson, G, & Minagawa, R. (1982). Hypnotic control of anticipatory emesis i n patients receiving cancer chemotherapy. J Consult C l i n Psychol, 50(3), 13-19. R e i l l y , D.T. (1983). Young doctors' views on a l t e r n a t i v e medicine. Br Med J, 287, 337-9. Reker, G., & Cousins, J. (1979, Jan.). Factor structure, construct v a l i d i t y and r e l i a b i l i t y of noetic goals (SONG) and purpose i n l i f e (PIL) t e s t s . Journal of C l i n i c a l Psychology, 35(1), 85-91. Richardson, D.C. (1987). Unproven cancer therapy- A matched case control study of factors r e l a t e d 132 to i t s use. Unpublished master's t h e s i s , U n i v e r s i t y of Minnesota. Rights of Patients (1985, March). The Wall Street Journal, p.6. Rogers, R.H. (1987). The r i g h t to t r y before they die. B.C. Medical Journal, 29(7), p. 406. Rossman, M.L. (1987). Healing yourself: A step-by- step program for better helth through imagery. New York: Walter Publishing Co., Inc. Rotter, J.B. (1966). Generalized expectancies for i n t e r n a l versus external control f o r reinforcement. Psychological Monographs, 80.(1), 1-27. Salsbury, K., & Johnson, E. (1981). The indispensable cancer handbook. New York: Wideview Books. Scott, D., Donahue, D., Mastrovito, R., & Hakes, T. (1983). The antiemetic e f f e c t of c l i n i c a l r e l a x a t i o n : Report of an exploratory p i l o t study. J Psy Oncol. 1(1), 71-84. Sheppard, K. (1985). Powerlessness: A nursing diagnosis. Dimensions i n Oncology Nursing, 1(2), 17-20. Sieg e l , B. (1986). Love, medicine and miracles. New York: Harper & Row, Publishers. S i e g e l , M. (1986). The cancer patient's handbook. New York: Walker and Co. Simonton, O.C., Matthews-Simonton, S., & Creighton, J.L. (1978). Getting well again. New York: Bantam Books. Snedecor, G.W., & Cochran, W.J. (1967). S t a t i s t i c a l methods (6th ed.). Iowa: Iowa State University Press. Spiro, S.G. (1988). Prognosis and end r e s u l t s . In Hoogstraten, B., Addis, B.J., Hansen, H., Martin, N., & Spiro, S.G. (Eds.) Lung tumours- Lung. mediastinum, pleura, & chest wall (pp.163-66). New York: Springer - Verlag. Taylor, S., Lichtman, R., & Wood, J. (1984). A t t r i b u t i o n s , b e l i e f s about co n t r o l , and adjustments to breast cancer. Journal of Personality and So c i a l Psychology. 46(3), 489-502. Thompson, S. (1981). W i l l i t hurt less i f I can control i t ? A complex answer to a simple question. Psychological B u l l e t i n , 90(1), 89-101. Thorne, S. (1985, October). The family cancer experience. Cancer Nursing, 8(5), 285-291. Uretsky, S., & B i r d s a l l , C. (1986, September). Quackery, a thoroughly modern problem. AJN, 1031-1033. Wallston, B. S., Wallston, K. A., Kaplan, G. D., Maides, S. A. (1976). Development and v a l i d a t i o n of the health locus of control scale. Journal of Consulting and C l i n i c a l Psychology. 44(6), 580-585. Wallston, B. S., Wallston, K. A., & D e v e i l l i s , R. (1978). Development of the multidimensional health locus of control scales. Health Education Monographs, 6., 160-170. Wallston, K.A. & Wallston, B. (1981). Research with the locus of control construct (Volume 1). New York: Academic Press. Wallston, K. A., & Wallston, B. (1982). Who i s responsible for your health? The construct of health locus of c o n t r o l . In G. Saunders, & J. Suls (Eds.) S o c i a l psychology of health and i l l n e s s • New Jersey: Lawrence Erlbaum Associates, Publishers. West, R., & I n g l i s , B. (Aug.8/1983). Spectrum. The Times, p.10. Wurtman, J . (1986). Managing your mind and mood through food. New York: Rawson Associates. 136 APPENDIX A 137 This is a questionna i re designed to determine the way in which different people view certain important health-related issues. Each item is a belief statement with which you may agree or disagree. Beside each statement is a scale which ranges frcm strongly disagree (1) to strongly agree (6). For each item we would like you to circle the number that represents the extent to which you disagree or agree with the statement. The more strongly you disagree with a statement, then the lower will be the number you circle. Please make sure that you answer every item and that you circle only one number per item. This is a measure of your personal beliefs; obviously, there are no right or wrong answers. Please answer these items carefully, but do not spend too much time on any one item. As much as you can, try to respond to each item independently. When making your choice, do not be influenced by your previous choices. It is important that you respond according to your actual beliefs and not according to how you feel you should believe or how you think we want you to believe. Scale; 1 Strongly Disagree 4 Slightly Agree 2 Moderately Disagree 5 Moderately Agree 3 Slightly Disagree 6 Strongly Agree 1. If I become sick, I have the power to make myself well again 1 2 3 4 5 6 2. Often I feel that no matter what I do, i f I am going to get sick, 1 2 3 4 5 6 I will get sick 3. If I see an excellent doctor regularly, I am less likely to have 1 2 3 4 5 6 health problems 4. It seems that my health is greatly influenced by accidental 1 2 3 4 5 6 happenings 5. I can only naintain my health by consulting health professionals 1 2 3 4 5 6 6. I am directly responsible for my health 1 2 3 4 5 6 7. Other people play a big part in whether I stay healthy or become 1 2 3 4 5 6 sick 8. Whatever goes wrong with my health is my own fault 1 2 3 4 5 6 9. When I am sick, I just have to let nature run its course 1 2 3 4 5 6 10. Health professionals keep me healthy 1 2 3 4 5 6 11. When I stay healthy, I'm just plain lucky 1 2 3 4 5 6 12. My physical well-being depends an how well I take care of myself 1 2 3 4 5 6 13. When I feel i l l , I know i t is because I have not been taking care 1 2 3 4 5 6 of myself 14. The type of care I receive from other people is what i s respon- 1 2 3 4 5 6 sible for how well I recover from illness 15. Even i f I take care of myself, it's easy to get sick 1 2 3 4 5 6 16. When I become i l l , i t's a matter of fate 1 2 3 4 5 6 17. I can pretty much stay healthy by taking good care of myself 1 2 3 4 5 6 18. Following doctor's orders to the letter i s the best way for me to 1 2 3 4 5 6 stay healthy 1 3 8 APPENDIX B For each type of alternative therapy l i s t e d , pleaae check whether or not you have heard of i t . I f you have heard of the treatment go to the right of the double l i n e and check the column that applies to your s i t u a t i o n . I f you have not heard of i t go on to the next treatment. Have Heard Of Have Not Heard Of Have Tried Have Considered Trying Would Consider Trying at Sometime in Future Have Not Tried Have Not ' Considered Trying Would Never Consider Trying 1. Laetrile 2. Grape Cure (grape diet) 3. Psychic surgery 4. Ozone generators 5. Carcin (neocarin or carzodelan) 6. Chaparral tea 7. Hoxey chemotherapy (Harry Hoxsey's Herbal Tonic) 8. Coffee enemas 9. Vibrating machines 10. Taheebo 11. Kelly Malignancy Index and Ecology Therapy 12. Krebiozen 13. Carrot juice diet 14. Greek Cure (Dr. Hariton Alivizatos) 15. Iscador 16. Orgone accumulators 17. Antineoplastons 18. Chacon Have Heard Of Have Not Heard Of Have Tried Have Considered Trying Would Consider Trying at Sometime in Future Have Not Tried Have Not Considered Trying Would Never Consider Trying 19. Comfrey 20. Diamethyl sulfoxide 21. Essiac 22. Faith Healing 23. Immunoagumentative Therapy (IAT) 24. Koch's treatment 25. Macrobiotic diets 26. Megadose vitamin ttherapy 27. Imagery 28. Are there any other methods of cancer 1- treatment that you have heard of that 2. have not beon recommended to you 3- by your doctor? If so please list them and 4 answer the questions to thf} rinht nf thr* double line concerning 5. them 6. 7. 8 9. 10. If you have considered or would consider trying any of the treatments on the list, please describe why or when you would try them. _ _ _ — If you have not tried, have not considered trying, or would never consider trying any of the treatments on the list, please describe why not. If you have tried any of the treatments on the list or any additional ones, please describe why you decided to try the treatment(s). If you have tried any of the treatments on the list or any additional ones, please estimate how much the treatment(s) cost you. S Total Cost S per treatment S per month $ per year _ _ _ _ _ _ there is no cost If you heard of any of the above treatments, please write the name of the treatment in the space provided in the "Treatment" column and indicate how you learned about it. (Check [ ] as many as apply to you) 1 Treatment 1 1 Source 1 1 1 1 nurse 1 1 1 1 books magazines newspapers radio/TV mail order friends/relatives your family doctor your cancer doctor health food store other (please list) 142 APPENDIX C P A T I E N T I N F O R M A T I O N S H E E T Sex: Male Female Marital Status: Married Separated Divorced Widowed Never Married Do you believe that your cancer is going to be cured? Yes No Uncertain Has your clinic doctor told you that your cancer can be cured? Yes No Uncertain 144 APPENDIX D T H E RELATIONSHIP OF BELIEF IN CONTROL AND COMMITMENT T O LIFE WITH CANCER PATIENTS' INCLINATION T O USE UNPROVEN CANCER THERAPIES / page 1 Investigator Barbara Skinn By signing this consent form, I indicia thai I fully understand the purpose of the study and my participation in it. I acknowledge that I have received a copy of the information and consent form. I have had questions answered to my satisfaction and I agree to participate in the study. (Signature) (Date) (Witness) (Date) 147 APPENDIX E APPENDIX E Wallson's Multidimensional Health Locus of Control Scores by Subiect Subject Internal Chance Powerful Other 1 25 14 19 2 33 9 16 3 36 12 22 4 26 10 25 5 31 19 29 6 23 27 14 7 31 16 19 8 35 27 36 9 24 26 34 10 32 15 22 11 23 22 28 12 34 19 20 13 30 10 26 14 20 21 19 15 35 16 23 16 27 18 17 17 25 11 8 18 19 18 9 19 16 19 13 20 27 16 16 21 29 22 19 22 28 15 19 23 22 23 32 24 33 12 31 25 29 17 19 26 36 22 31 27 32 23 33 28 22 18 25 29 26 19 23 30 27 11 17 31 21 10 17 32 31 8 16 33 32 20 7 34 34 16 22 35 25 13 27 36 30 19 22 37 28 18 13 38 31 8 21 39 24 21 25 40 14 25 36

Cite

Citation Scheme:

    

Usage Statistics

Country Views Downloads
United States 4 0
France 2 0
Philippines 1 0
City Views Downloads
Unknown 2 0
Isabang 1 0
Boardman 1 0
Sunnyvale 1 0
Mountain View 1 0
Ashburn 1 0

{[{ mDataHeader[type] }]} {[{ month[type] }]} {[{ tData[type] }]}

Share

Share to:

Comment

Related Items