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Alternative and complementary therapy use by women living with breast cancer : a test of three models Balneaves, Linda Georgie 2002

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ALTERNATIVE AND COMPLEMENTARY THERAPY USE BY WOMEN LIVING WITH BREAST CANCER: A TEST OF THREE MODELS by LYNDA GEORGIE BALNEAVES BSc, The University of Manitoba, 1990 BN, The University of Manitoba, 1994 M N , The University of Manitoba, 1996  A T H E S I S SUBMITTED IN PARTIAL F U L F I L L M E N T O F THE REQUIREMENTS FOR THE D E G R E E OF DOCTOR OF PHILOSOPHY in THE FACULTY OF GRADUATE STUDIES (School of Nursing, Faculty of Applied Science)  W e accept this thesis as conforming to the required standard  T H E UNIVERSITY O F BRITISH C O L U M B I A October 2002 © Lynda Georgie Balneaves, 2002  In presenting this thesis in partial fulfillment 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 of Nursing The University of British Columbia Vancouver, Canada  Date  GtJvIo^  10 , 7QQ2  II  Abstract T h e overall a i m of this study w a s to e n h a n c e k n o w l e d g e of the e x p e r i e n c e of alternative a n d c o m p l e m e n t a r y therapy ( A C T ) u s e in w o m e n living with breast c a n c e r . T h i s w a s a c h i e v e d by d e v e l o p i n g a n d testing three cognitive m o d e l s of the c a u s a l relationships b e t w e e n s e l e c t e d health beliefs, s o c i o b e h a v i o u r a l factors, d e m o g r a p h i c characteristics, a n d A C T utilization a m o n g w o m e n with breast c a n c e r . T h e p r e v a l e n c e a n d patterns of A C T u s e w e r e a l s o e x a m i n e d . A retrospective, correlational s u r v e y d e s i g n w a s u s e d in this study. A r a n d o m s a m p l e of 6 5 0 w o m e n with s t a g e I or II breast c a n c e r w a s s e l e c t e d from the British C o l u m b i a C a n c e r Registry, of w h i c h 5 7 7 w o m e n w e r e eligible for study participation. C o m p l e t e d self-report q u e s t i o n n a i r e s w e r e r e c e i v e d f r o m 3 3 4 w o m e n . T h e s u r v e y i n c l u d e d q u e s t i o n s to a s s e s s p e r c e i v e d risk of breast c a n c e r r e c u r r e n c e , s y m p t o m distress, p e r c e i v e d efficacy of A C T s , barriers to A C T u s e , p e r c e i v e d control, a n d A C T utilization. Descriptive statistics w e r e u s e d to d e s c r i b e A C T utilization. Structural e q u a t i o n modelling w a s u s e d to test the three m o d e l s of A C T u s e a c r o s s the contexts of preventive, ameliorative, a n d restorative health b e h a v i o u r . A substantial proportion of w o m e n with breast c a n c e r w a s f o u n d to be using a variety of A C T s . V i t a m i n / m i n e r a l s u p p l e m e n t s , herbal r e m e d i e s , and spiritual t h e r a p i e s w e r e the most c o m m o n l y reported A C T s , with the majority of w o m e n using fewer than five t h e r a p i e s following their breast c a n c e r d i a g n o s i s a n d s p e n d i n g u n d e r $ 5 0 . 0 0 a month o n A C T s . W o m e n most often s o u g h t information about A C T s from lay s o u r c e s , including family a n d friends a n d print m e d i a . T h e majority of w o m e n h a d d i s c l o s e d their u s e of A C T s to at least o n e of their c o n v e n t i o n a l health c a r e provider(s). W o m e n w h o h a d u s e d A C T s prior to their breast c a n c e r d i a g n o s i s a n d had r e c e i v e d e n c o u r a g e m e n t from significant others to u s e A C T s w e r e f o u n d to h a v e greater c o m m i t m e n t to A C T s . H e a l t h beliefs w e r e f o u n d to explain a minimal a m o u n t of v a r i a n c e s in w o m e n ' s c o m m i t m e n t to A C T s . E x c e p t i o n s i n c l u d e d p e r c e i v e d efficacy of A C T s with r e g a r d s to restoring well b e i n g a n d p e r c e i v e d control o v e r well b e i n g . W o m e n w h o b e l i e v e d A C T s to be efficacious in improving p h y s i c a l a n d mental well being a n d p e r c e i v e d t h e m s e l v e s to be r e s p o n s i b l e for their well b e i n g w e r e m o r e likely to be committed to A C T s . T h e study findings s u g g e s t that A C T u s e is a w i d e s p r e a d p h e n o m e n o n in breast c a n c e r p o p u l a t i o n s that is influenced most strongly by past health b e h a v i o u r a n d the n o r m s a n d p r e f e r e n c e s that exist within w o m e n ' s s o c i a l g r o u p s . T h e s e findings a l s o contribute to our u n d e r s t a n d i n g of A C T u s e by w o m e n with breast c a n c e r a s b e i n g a reflection of their c o m m i t m e n t to s e l f - c a r e a n d w e l l n e s s . T h e n e e d for further r e s e a r c h that e x p l o r e s the roles of family m e m b e r s a n d health c a r e providers in treatment d e c i s i o n s related to A C T s a n d e d u c a t i o n a l a n d c o u n s e l i n g strategies that support informed treatment d e c i s i o n m a k i n g are implications of this study.  iii  Table of Contents Abstract  ii  T a b l e of C o n t e n t s  iii  List of T a b l e s  ix  List of F i g u r e s  xii  Acknowledgements,  xiii  CHAPTER ONE-INTRODUCTION  1  B a c k g r o u n d to the S t u d y  1  Conceptual Issues  3  Defining A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s  3  Classifying Alternative/Complementary Therapies  6  W h y S t u d y A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e in W o m e n with B r e a s t C a n c e r ?  6  Research Purpose  9  Summary  9  CHAPTER TWO - LITERATURE REVIEW  11  Alternative a n d C o m p l e m e n t a r y T h e r a p y U s e in G e n e r a l a n d C a n c e r P o p u l a t i o n s  11  P r e v a l e n c e of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e in the G e n e r a l P o p u l a t i o n A s s e s s m e n t of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  12 12  Sampling Issues  12  Retrospective Self-Report Measures  13  A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y Utilization P a t t e r n s  13  P r e v a l e n c e of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e in C a n c e r P o p u l a t i o n s  16  A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e by W o m e n Living with B r e a s t C a n c e r  22  C h a r a c t e r i s t i c s of C o n s u m e r s of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s  24  D e m o g r a p h i c Profile within G e n e r a l P o p u l a t i o n s  25  D e m o g r a p h i c Profile within C a n c e r P o p u l a t i o n s  26  P r e v i o u s Health E x p e r i e n c e s  27  Health B e l i e f s a n d A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  27  Health Beliefs within G e n e r a l P o p u l a t i o n  28  Health Beliefs within C a n c e r P o p u l a t i o n s  33  Health B e l i e f s within the B r e a s t C a n c e r P o p u l a t i o n  35  P e r c e p t i o n s of N e e d for C a r e  36  S u m m a r y of the R o l e of Health Beliefs  37  iv  O t h e r F a c t o r s A s s o c i a t e d with A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  38  Social Support  38  Control  40  T r e a t m e n t D e c i s i o n M a k i n g by W o m e n Living with B r e a s t C a n c e r  42  Conventional Treatment Decision Making  42  Treatment Decision Making and Alternative/Complementary Therapies  45  Chapter Summary  47  CHAPTER THREE - THEORETICAL MODELS  50  M o d e l s of Health B e h a v i o u r  50  B e h a v i o u r a l M o d e l of Health C a r e Utilization  51  H e a l t h L o c u s of C o n t r o l  51  T h e o r y of R e a s o n e d A c t i o n  52  Summary  52  T h e H e a l t h Belief M o d e l  52  T h e o r e t i c a l M o d e l s of C o m m i t m e n t to A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s  55  T h e P r e v e n t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  55  T h e A m e l i o r a t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  61  T h e R e s t o r a t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  65  Chapter Summary  71  CHAPTER FOUR - METHODS AND PROCEDURES..  72  Research Design  72  Sample  72 Setting a n d Participants Sample Size  72 ,  73  R e c r u i t m e n t of Participants  77  Survey Completion Rates  78  Data Collection  81  M o d i f i e d Total D e s i g n M e t h o d  81  Pilot T e s t i n g  82  O p e r a t i o n a l i z a t i o n of S t u d y C o n s t r u c t s  83  Demographics  84  E n c o u r a g e m e n t to U s e A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s  84  P e r c e i v e d Likelihood of R e c u r r e n c e  85  Perceived Symptom Distress  86  P e r c e i v e d R i s k of H a r m  87  P e r c e i v e d Severity of H a r m  87  P e r c e i v e d E f f i c a c y of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s  88  P e r c e i v e d Barriers to A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  89  Perceived Control  90  C o m m i t m e n t to A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s  92  Data Analysis  101  Missing Data  101  Structural E q u a t i o n M o d e l l i n g  101  Ethical C o n s i d e r a t i o n s  102  C H A P T E R FIVE - DESCRIPTIVE FINDINGS  105  The Sample  105  D e m o g r a p h i c , D i s e a s e , a n d T r e a t m e n t C h a r a c t e r i s t i c s of N o n - R e s p o n d e n t s  105  D e m o g r a p h i c C h a r a c t e r i s t i c s of the R e s p o n d e n t s  105  D i s e a s e C h a r a c t e r i s t i c s of the R e s p o n d e n t s  106  C o n v e n t i o n a l C a n c e r T r e a t m e n t History of the R e s p o n d e n t s  106  D i f f e r e n c e s b e t w e e n the R e s p o n d e n t s a n d N o n - R e s p o n d e n t s  109  U s e of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s by W o m e n with B r e a s t C a n c e r  110  P r e v a l e n c e of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  110  P r e v a l e n c e of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e by T h e r a p y T y p e  112  Effect of D e m o g r a p h i c C h a r a c t e r i s t i c s on A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e . 1 1 3 P a t t e r n s of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  114  N u m b e r of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s U s e d  114  P r i o r E x p e r i e n c e with A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s  115  Initiation of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  115  Current Use of Alternative/Complementary Therapies  117  F r e q u e n c y of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  118  Effort Involved in U s i n g A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s  118  C o s t of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  119  S o u r c e s of Information about A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s  120  D i s c l o s u r e of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  121  v  C H A P T E R SIX - M O D E L P R E P A R A T I O N  122  P r e v e n t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  122  E x a m i n a t i o n of M i s s i n g D a t a  122  vi  T e s t s of Normality  126  Univariate Normality  126  Bivariate Normality  128  C o n f i r m a t o r y F a c t o r A n a l y s i s of the M e a s u r e m e n t M o d e l  131  Inclusion of W o m e n with B r e a s t C a n c e r R e c u r r e n c e a n d O t h e r C a n c e r D i a g n o s i s . . . . 132 M e a s u r e m e n t S c a l i n g a n d Reliabilities  134  S u m m a r y of the P r e p a r a t i o n of the P r e v e n t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y Therapy U s e A m e l i o r a t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  137 137  E x a m i n a t i o n of M i s s i n g D a t a  139  T e s t s of Normality  140  Univariate Normality  140  Bivariate Normality  142  C o n f i r m a t o r y F a c t o r A n a l y s i s of the M e a s u r e m e n t M o d e l  143  Inclusion of W o m e n with B r e a s t C a n c e r R e c u r r e n c e a n d O t h e r C a n c e r D i a g n o s i s . . . . 146 M e a s u r e m e n t S c a l i n g a n d Reliabilities  148  S u m m a r y of the P r e p a r a t i o n of the A m e l i o r a t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y Therapy U s e R e s t o r a t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  148 151  E x a m i n a t i o n of M i s s i n g D a t a  151  T e s t s of Normality  153  Univariate Normality  153  Bivariate Normality  155  C o n f i r m a t o r y F a c t o r A n a l y s i s of the M e a s u r e m e n t M o d e l  156  Inclusion of W o m e n with B r e a s t C a n c e r R e c u r r e n c e a n d O t h e r C a n c e r D i a g n o s i s . . . . 157 M e a s u r e m e n t S c a l i n g a n d Reliabilities  159  S u m m a r y of the P r e p a r a t i o n of the Restorative M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y Therapy U s e 160 CHAPTER SEVEN - STRUCTURAL EQUATION MODELLING RESULTS  162  P r e v e n t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  162  Structural M o d e l 1a M o d e l Modifications to M o d e l 1a Structural M o d e l 1b M o d e l Modifications to M o d e l 1b Structural M o d e l 1c M o d e l Modifications to M o d e l 1c  162 164 165 165 166 166  vii  Structural M o d e l 1d M o d e l Modifications to M o d e l 1d Structural M o d e l 1e M o d e l Modifications to M o d e l 1e Structural M o d e l 1f  166 166 167 167 167  M o d e l Modifications to M o d e l 1f  168  B o o t s t r a p p i n g of M o d e l 1f  168  Direct a n d Indirect Effects in Structural M o d e l 1f  170  S u m m a r y of M o d e l T e s t i n g of the P r e v e n t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y Therapy U s e A m e l i o r a t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e Structural M o d e l 2b M o d e l Modifications to M o d e l 2 b Structural M o d e l 2 c M o d e l Modifications to M o d e l 2 c Structural M o d e l 2d M o d e l Modifications to M o d e l 2 d Structural M o d e l 2 e  173 174 174 176 176 177 177 177 178  M o d e l Modifications to M o d e l 2 e  178  B o o t s t r a p p i n g of M o d e l 2 e  178  Direct a n d Indirect Effects in Structural M o d e l 2 e  181  S u m m a r y of M o d e l T e s t i n g of the A m e l i o r a t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y Therapy U s e R e s t o r a t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e Structural M o d e l 3 a M o d e l Modifications to M o d e l 3 a Structural M o d e l 3 b M o d e l Modifications to M o d e l 3b Structural M o d e l 3 c M o d e l Modifications to M o d e l 3 c Structural M o d e l 3d  183 183 183 185 185 186 186 186 187  M o d e l Modifications to M o d e l 3d  187  B o o t s t r a p p i n g of M o d e l 3d  188  Direct a n d Indirect Effects in Structural M o d e l 3d  189  S u m m a r y of M o d e l T e s t i n g of the R e s t o r a t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y Therapy Use  192  viii  C H A P T E R E I G H T - D I S C U S S I O N A N D IMPLICATIONS  193  D i s c u s s i o n of the F i n d i n g s  193  A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e by W o m e n Living with B r e a s t C a n c e r  193  P r e v a l e n c e of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  194  Commonly Used Therapies  195  P a t t e r n s of U s e  197  C o s t of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  199  S o u r c e s of Information about A C T s a n d D i s c l o s u r e of U s e  200  T h e R o l e of Health Beliefs in Alternative a n d C o m p l e m e n t a r y T h e r a p y U s e  202  P r e v e n t i v e M o d e l of Alternative a n d C o m p l e m e n t a r y T h e r a p y U s e  203  A m e l i o r a t i v e M o d e l of Alternative a n d C o m p l e m e n t a r y T h e r a p y U s e  207  R e s t o r a t i v e M o d e l of Alternative a n d C o m p l e m e n t a r y T h e r a p y U s e  209  C o m p a r i s o n of the T h r e e M o d e l s of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  212  Contributions a n d Strengths of the S t u d y  215  Theoretical Considerations  215  Methodological Considerations  216  Limitations of the S t u d y  217  Study Design  217  Retrospective Data  217  M e a s u r e m e n t Issues  218  Generalizability  221  Implications for P r a c t i c e  222  R e c o m m e n d a t i o n s for Future R e s e a r c h  224  Conclusion  229  REFERENCES  230  APPENDICES  248  A p p e n d i x 1 - F a m i l y P h y s i c i a n Letter  248  A p p e n d i x 2 - Letter of Invitation  249  Appendix 3 - Consent Form  250  A p p e n d i x 4 - Q u e s t i o n n a i r e C o v e r Letter  252  Appendix 5 - Study Questionnaire  253  A p p e n d i x 6 - F o l l o w - u p Letter  279  Appendix 7 - Survey Assessment Form  280  A p p e n d i x 8 - C o m p l e t e A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y List (Liberal Definition)  281  A p p e n d i x 9 - C o v a r i a n c e M a t r i c e s for M o d e l s of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e . . 2 8 3  ix  List of Tables  1.  C l a s s i f i c a t i o n of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s  7  2.  S u m m a r y D a t a from P r e v a l e n c e S t u d i e s of A C T U s e in C a n c e r P o p u l a t i o n s  18  3.  Survey Completion Rates  78  4.  R e a s o n s for Ineligibility  78  5.  Inclusion a n d E x c l u s i o n S e l e c t i o n Criteria  79  6.  R e a s o n s for N o n - P a r t i c i p a t i o n of Eligible W o m e n  79  7.  List of S c a l e s / I t e m s in Final S t u d y Q u e s t i o n n a i r e  95  8.  S t u d y C o n s t r u c t s a n d A s s o c i a t e d Instruments in the P r e v e n t i v e , A m e l i o r a t i v e , and Restorative Models  100  9.  D e m o g r a p h i c C h a r a c t e r i s t i c s of the R e s p o n d e n t s . . . .  107  10.  C o n v e n t i o n a l C a n c e r T r e a t m e n t History of the R e s p o n d e n t s  108  11.  Discrepancies between Respondents' Self-Report and B C C a n c e r Registry D a t a o n C o n v e n t i o n a l T r e a t m e n t History  109  12.  D e m o g r a p h i c a n d D i s e a s e C h a r a c t e r i s t i c s of R e s p o n d e n t s a n d N o n - R e s p o n d e n t s . . 1 1 0  13.  P r e v a l e n c e of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  111  14.  Most Frequently Reported Alternative/Complementary Therapies  112  15.  P r e v a l e n c e of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e by T h e r a p y T y p e  113  16.  A s s o c i a t i o n of D e m o g r a p h i c C h a r a c t e r i s t i c s with A l t e r n a t i v e / C o m p l e m e n t a r y Therapy Use  17.  N u m b e r of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s U s e d  18.  A s s o c i a t i o n b e t w e e n Prior A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e a n d the  114 115  U s e of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s Following B r e a s t C a n c e r D i a g n o s i s . . . . 116 19.  A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y Initiation by T h e r a p y T y p e  116  20.  C o m p a r i s o n of T h e r a p y Initiation by T h e r a p y T y p e  117  21.  A s s o c i a t i o n b e t w e e n T h e r a p y Initiation a n d Current U s e of Alternative/ C o m p l e m e n t a r y T h e r a p i e s at T i m e of S u r v e y C o m p l e t i o n  118  22.  F r e q u e n c y of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e  118  23.  Effort Involved in U s i n g A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s by T h e r a p y T y p e  119  24.  R e p o r t e d S o u r c e s of Information about A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s  121  25.  S u m m a r y of M i s s i n g D a t a in the P r e v e n t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y Therapy U s e  124  X  26.  F r e q u e n c y of Imputed M i s s i n g D a t a for A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e V a r i a b l e s by T h e r a p y T y p e  125  27.  Univariate Statistics for E x o g e n o u s V a r i a b l e s (Preventive M o d e l - M o d e l 1a)  126  28.  Univariate Statistics for E n d o g e n o u s V a r i a b l e s (Preventive M o d e l - M o d e l 1a)  127  29.  Bivariate Normality V i o l a t i o n s for E x o g e n o u s a n d E n d o g e n o u s V a r i a b l e s in the P r e v e n t i v e M o d e l ( M o d e l 1a) F o l l o w i n g T r a n s f o r m a t i o n s  129  30.  Univariate Statistics for R e v i s e d a n d N e w V a r i a b l e s (Preventive M o d e l - M o d e l 1a). 130  31.  Bivariate Normality V i o l a t i o n s for E x o g e n o u s a n d E n d o g e n o u s V a r i a b l e s in the P r e v e n t i v e M o d e l ( M o d e l 1a) F o l l o w i n g T r a n s f o r m a t i o n s  32.  G o o d n e s s - o f - F i t Indices for the M e a s u r e m e n t M o d e l of the P r e v e n t i v e M o d e l (Model 1a  132  33.  F a c t o r L o a d i n g s a n d t-Values  34.  M e a n D i f f e r e n c e s b e t w e e n W o m e n with a n d without B r e a s t C a n c e r R e c u r r e n c e on  for the M e a s u r e m e n t M o d e l of the P r e v e n t i v e M o d e l . . 133  P r e v e n t i v e M o d e l ( M o d e l 1a) V a r i a b l e s 35.  134  M e a n D i f f e r e n c e s b e t w e e n W o m e n with a n d without O t h e r C a n c e r D i a g n o s i s o n P r e v e n t i v e M o d e l ( M o d e l 1a) V a r i a b l e s  36.  131  135  S u m m a r y of M i s s i n g D a t a in the A m e l i o r a t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e ( M o d e l 2a)  140  37.  Univariate Statistics for E x o g e n o u s V a r i a b l e s (Ameliorative M o d e l - M o d e l 2 a ) . . .  141  38.  Univariate Statistics for E n d o g e n o u s V a r i a b l e s (Ameliorative M o d e l - M o d e l 2a)  142  39.  Bivariate Normality V i o l a t i o n s for E x o g e n o u s a n d E n d o g e n o u s V a r i a b l e s in the A m e l i o r a t i v e M o d e l ( M o d e l 2a) F o l l o w i n g T r a n s f o r m a t i o n s  40.  G o o d n e s s - o f - F i t Indices for the M e a s u r e m e n t M o d e l of the A m e l i o r a t i v e M o d e l ( M o d e l 2 a a n d M o d e l 2b)  41.  147  Error V a r i a n c e s in the A m e l i o r a t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e . ( M o d e l 2b)  45.  146  M e a n D i f f e r e n c e s b e t w e e n W o m e n with a n d without other c a n c e r d i a g n o s i s on the A m e l i o r a t i v e M o d e l ( M o d e l 2b) V a r i a b l e s  44.  145  M e a n D i f f e r e n c e s b e t w e e n W o m e n with a n d without breast c a n c e r r e c u r r e n c e o n the A m e l i o r a t i v e M o d e l ( M o d e l 2b) V a r i a b l e s  43.  144  F a c t o r L o a d i n g s a n d f-values for the M e a s u r e m e n t M o d e l of the A m e l i o r a t i v e M o d e l ( M o d e l 2 a a n d M o d e l 2b)  42.  143  149  S u m m a r y of M i s s i n g D a t a in the R e s t o r a t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e ( M o d e l 3a)  152  46.  Univariate Statistics for E x o g e n o u s V a r i a b l e s (Restorative M o d e l - M o d e l 3a)  153  47.  Univariate Statistics for E n d o g e n o u s V a r i a b l e s (Restorative M o d e l - M o d e l 3a)  154  XI  48.  Bivariate Normality V i o l a t i o n s for E x o g e n o u s a n d E n d o g e n o u s V a r i a b l e s in the Restorative Model Following Transformations  49.  G o o d n e s s - o f - F i t Indices for the M e a s u r e m e n t M o d e l of the R e s t o r a t i v e M o d e l ( M o d e l 3a)  50.  159  Error V a r i a n c e in the R e s t o r a t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e ( M o d e l 3a)  54.  158  M e a n Difference b e t w e e n W o m e n with a n d without O t h e r C a n c e r D i a g n o s i s on the R e s t o r a t i v e M o d e l ( M o d e l 3a) V a r i a b l e s  53.  157  M e a n Difference b e t w e e n W o m e n with a n d without B r e a s t C a n c e r R e c u r r e n c e on the R e s t o r a t i v e M o d e l ( M o d e l 3a) V a r i a b l e s  52.  156  F a c t o r L o a d i n g s a n d f-values for the M e a s u r e m e n t M o d e l of the R e s t o r a t i v e M o d e l ( M o d e l 3a)  51.  156  160  G o o d n e s s - o f - F i t Indices for S e q u e n t i a l Modifications of the P r e v e n t i v e M o d e l of Alternative/Complementary Therapy U s e  165  55.  P a r a m e t e r E s t i m a t e s for M o d e l 1f (Preventive M o d e l )  171  56.  Direct a n d Indirect Effects from Structural M o d e l 1f (Preventive M o d e l )  171  57.  G o o d n e s s - o f - F i t Indices for S e q u e n t i a l Modifications of the A m e l i o r a t i v e M o d e l of Alternative/Complementary Therapy U s e  174  58.  P a r a m e t e r E s t i m a t e s for M o d e l 2d (Ameliorative Model)  179  59.  Direct a n d Indirect Effects from Structural M o d e l 2 d (Ameliorative M o d e l )  182  60.  G o o d n e s s - o f - F i t Indices for S e q u e n t i a l Modifications of the R e s t o r a t i v e M o d e l of Alternative/Complementary Therapy U s e  186  61.  P a r a m e t e r E s t i m a t e s for M o d e l 3d (Restorative M o d e l )  188  62.  Direct a n d Indirect Effects from Structural M o d e l 3d (Restorative M o d e l )  190  63.  M a j o r S t u d y F i n d i n g s a n d Implications  225  xii  List of Figures  1.  P r e v e n t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e by W o m e n Living with B r e a s t C a n c e r  2.  A m e l i o r a t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e by W o m e n Living with B r e a s t C a n c e r  3.  56  63  R e s t o r a t i v e M o d e l of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e by W o m e n Living with B r e a s t C a n c e r  67  4.  F l o w D i a g r a m of the D e v e l o p m e n t of the Final D a t a s e t prior to R a n d o m i z a t i o n  74  5.  F l o w D i a g r a m of the R e c r u i t m e n t P r o c e s s  80  6.  T r a n s f o r m a t i o n of P e r c e i v e d C o n t r o l Items  91  7.  Total Monthly C o s t of Current A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p y U s e (Liberal Definitions  120  8.  M o d e l 1a - P r e v e n t i v e U s e of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s  138  9.  M o d e l 2 b - A m e l i o r a t i v e U s e of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s  150  10.  M o d e l 3 a - R e s t o r a t i v e U s e of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s  161  11.  Structural M o d e l 1 a - Preventive U s e of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s  12.  Structural M o d e l 1 f - P r e v e n t i v e U s e of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s  172  13.  Structural M o d e l 2 b - A m e l i o r a t i v e U s e of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s  175  14.  Structural M o d e l 2 d - A m e l i o r a t i v e U s e of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s  180  15.  Structural M o d e l 3 a - Restorative U s e of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s  184  16.  Structural M o d e l 3 c - R e s t o r a t i v e U s e of A l t e r n a t i v e / C o m p l e m e n t a r y T h e r a p i e s  191  163  xiii  Acknowledgements A l t h o u g h there is just o n e p e r s o n listed at the front of this dissertation, there are m a n y others that h a v e contributed to what y o u are about to r e a d . F o r e m o s t , I w o u l d like to e x p r e s s my s i n c e r e gratitude to m y doctoral dissertation committee, D r s . J o a n Bottorff, P a m e l a R a t n e r , G r e g H i s l o p , a n d C a r o l Herbert for their kind g u i d a n c e a n d e x c e p t i o n a l mentoring during the past six y e a r s . It w a s a long r o a d , but your e n c o u r a g i n g w o r d s a n d thoughtful c o m m e n t s p u s h e d m e through the t o u g h times a n d c h a l l e n g e d m e to k e e p o p e n to different p e r s p e c t i v e s . T o m y partner A l l a n Brett, y o u w e r e there from the beginning of this journey a n d h a v e c h e e r e d m e o n through the late nights, the n e v e r - e n d i n g d e a d l i n e s , a n d the t i m e s w h e n putting a s e n t e n c e together w a s a feat unto itself. T h a n k y o u for your love a n d patience - I p r o m i s e no more degrees! T o my parents, G e o r g i e a n d L e s B a l n e a v e s , this dissertation reflects the determination a n d c o n f i d e n c e y o u instilled in m e to p u r s u e m y d r e a m s , e v e n the o n e s that s c a r e m e . T h a n k y o u for a l w a y s b e i n g there a n d c h e e r i n g m e o n . T o my " B C " parents, Bill a n d D i a n n a Brett, I c a m e to B C to get my P h D a n d n e v e r thought that I w o u l d e n d up with a n e x t e n d e d family. T h a n k y o u for o p e n i n g your hearts to m e a n d s h a r i n g your h o m e . A n d for m y friends, B r e n d a , C a r o l , R u t h , C a r o l i n e , a n d A n n e M a r i e , my s i n c e r e gratitude for the w i n e , w h i n e , a n d love that y o u w e r e a l w a y s r e a d y to s h a r e . I w o u l d a l s o like to a c k n o w l e d g e the g e n e r o u s support I r e c e i v e d throughout my s t u d i e s from a variety of o r g a n i z a t i o n s , including the National Health R e s e a r c h D e v e l o p m e n t P r o g r a m , the British C o l u m b i a Health R e s e a r c h F o u n d a t i o n , the C a n a d i a n R e d C r o s s , the C a n a d i a n N u r s e s F o u n d a t i o n , the C a n a d i a n A s s o c i a t i o n of N u r s e s in O n c o l o g y , the National C a n c e r Institute of C a n a d a , the University of British C o l u m b i a , a n d U B C S c h o o l of N u r s i n g . A n d to the w o m e n w h o took the time to participate in this r e s e a r c h , my d e e p e s t t h a n k s for your w i l l i n g n e s s to s h a r e your e x p e r i e n c e s a n d for helping us better u n d e r s t a n d the treatment c h o i c e s that y o u are f a c e d with. Y o u r stories continue to inspire m e to work t o w a r d s finding w a y s to better c a r e for y o u a n d your family m e m b e r s .  1  Chapter 1  Introduction In recent y e a r s , there h a s b e e n a r e m a r k a b l e i n c r e a s e in interest a n d u s e of t h e r a p i e s that are c o n s i d e r e d to be b e y o n d the realm of conventional m e d i c a l c a r e . In a recent survey c o n d u c t e d by the F r a s e r Institute ( R a m s a y , W a l k e r , & A l e x a n d e r , 1999), nearly three quarters of C a n a d i a n s s u r v e y e d h a d u s e d treatment that w a s alternative or c o m p l e m e n t a r y to their allopathic c a r e at s o m e point in their lives. O n e group that h a s b e e n v o c a l in its support a n d a d v o c a c y of alternative a n d c o m p l e m e n t a r y t h e r a p i e s ( A C T s ) h a s b e e n w o m e n with breast c a n c e r . In a d o c u m e n t recently published by the B C / Y u k o n C h a p t e r of the C a n a d i a n B r e a s t C a n c e r F o u n d a t i o n (Trussler, 2001), c o n s u m e r s identified A C T s a s playing a central role in the supportive breast c a r e strategy. With w o m e n with breast c a n c e r c o m p r i s i n g o n e of the largest c a t e g o r i e s of c a n c e r survivors in C a n a d a (National C a n c e r Institute of C a n a d a [ N C I C ] , 2 0 0 1 ) , the impact of A C T s on provincial health c a r e s y s t e m s m a y be significant. A s the m o v e m e n t t o w a r d s integration of A C T s into conventional c a n c e r care h a s g a i n e d m o m e n t u m , r e s e a r c h e r s h a v e f o c u s s e d on determining what s o c i a l a n d behavioural factors influence the treatment d e c i s i o n s of individuals living with c a n c e r . W h i l e m u c h h a s b e e n u n c o v e r e d by this r e s e a r c h , what r e m a i n s to be d e v e l o p e d is a c o m p r e h e n s i v e , theoretical m o d e l of A C T utilization.  Background to the Study Interviews with w o m e n living with breast c a n c e r h a v e r e v e a l e d A C T s to be integral to their e x p e r i e n c e s with this life-threatening d i s e a s e ( B o o n et al., 1999; G r a y et a l . , 1997; Truant, 1998). F o r s o m e w o m e n , A C T s are a m e a n s of preserving h o p e w h e n f a c e d with the uncertainty of their p r o g n o s i s (Truant & Bottorff, 1999). F o r others, the d e c i s i o n to u s e A C T s reflects a d e s i r e to regain control over their health a n d to assert their i n d e p e n d e n c e within the b i o m e d i c a l h e a l t h - c a r e s y s t e m (Montbriand, 1995a). W o m e n with breast c a n c e r w h o c h o o s e A C T s h a v e a l s o b e e n motivated by s p e c i f i c g o a l s related to their d i s e a s e a n d recovery,  2  including the i m p r o v e m e n t of their i m m u n e s y s t e m , the m a n a g e m e n t of a d v e r s e effects of c o n v e n t i o n a l c a n c e r treatments, a n d the restoration of their p h y s i c a l a n d emotional well being (Crocetti et al., 1998). D e s p i t e the limited n u m b e r of w o m e n w h o h a v e reported using A C T s in the h o p e of curing their breast c a n c e r (Morris, J o h n s o n , H o m e r , & W a l t s , 2000) a n d a s a r e p l a c e m e n t for c o n v e n t i o n a l c a n c e r c a r e (Burstein, G e l b e r , G u a d a g n o l i , & W e e k s , 1999), c o n v e n t i o n a l health p r o f e s s i o n a l s a n d r e s e a r c h e r s h a v e e x p r e s s e d c o n c e r n regarding the u s e of t h e s e t h e r a p i e s ( B e y e r s t e i n , 1997; D a m k i e r , E l v e r d a m , G l a s d a m , J e n s e n , & R o s e , 1998; Davidoff, 1 9 9 8 ; Durant, 1998). Their c o n c e r n is not without justification b e c a u s e there h a s b e e n limited s t u d y of the efficacy a n d safety of A C T s in relation to c a n c e r c a r e (Tagliaferri, C o h e n , & Tripathy, 2 0 0 1 ) a n d s o m e s u g g e s t i o n that potentially harmful interactions with c o n v e n t i o n a l treatments m a y exist (Decker, 2 0 0 0 ; J a c o b s o n & Verret, 2001). A recent study of w o m e n with e a r l y - s t a g e breast c a n c e r (Burstein et al., 1999) r a i s e d additional c o n c e r n s w h e n w o m e n using A C T s w e r e f o u n d to report higher levels of p s y c h o l o g i c a l distress a n d anxiety than n o n - u s e r s . R e s e a r c h e r s h a v e b e e n cautious in relating A C T u s e to i n c r e a s e d p s y c h o l o g i c a l morbidity (Holland, 1999), instead s u g g e s t i n g that c a n c e r patients m a y turn to A C T s to treat the d i s t r e s s that h a s b e e n not a d d r e s s e d by the c o n v e n t i o n a l health-care s y s t e m . W i t h nearly o n e half of w o m e n with breast c a n c e r c h o o s i n g not to d i s c u s s their treatment d e c i s i o n s about A C T s with their c o n v e n t i o n a l health-care providers (Adler & F o s k e t , 1999; B a l n e a v e s , Kristjanson, & T a t a r y n , 1999), opportunities to d i s c u s s c o n c e r n s about A C T s a n d satisfaction with c o n v e n t i o n a l c a r e a r e often not r e a l i z e d in clinical settings. C o n c e r n s about the safety of A C T s a n d the possibility that A C T u s e m a y function a s a m a r k e r for d i s t r e s s a n d dissatisfaction with c a r e h a v e resulted in a large body of r e s e a r c h f o c u s s e d on determining w h i c h individuals are most likely to utilize A C T s . In both the g e n e r a l population ( E i s e n b e r g , 1997; K e l n e r & W e l l m a n , 1 9 9 7 a ; Millar, 1997) a n d a c r o s s c a n c e r d i a g n o s e s (Crocetti et a l . , 1998; D o w n e r et al., 1994; Ernst & C a s s i l e t h , 1998), a distinct profile of A C T c o n s u m e r s h a s b e e n r e v e a l e d . S o c i o d e m o g r a p h i c factors, s u c h a s a g e , g e n d e r , e d u c a t i o n , i n c o m e , a n d a history of c h r o n i c illness, h a v e b e e n a s s o c i a t e d with A C T utilization (Blais, M a i g a , & A b o u b a c a r , 1997; E i s e n b e r g et al., 1998; L e r n e r & K e n n e d y , 1992). R e s e a r c h h a s a l s o e x a m i n e d the role of cognitive factors a n d belief s y s t e m s in the d e c i s i o n to u s e A C T s . M o s t striking h a s b e e n the a s s o c i a t i o n b e t w e e n beliefs about health a n d illness a n d treatment d e c i s i o n s related to A C T s ( F u r n h a m & B o n d , 2 0 0 0 ; F u r n h a m & K i r k c a l d y , 1 9 9 6 ; K e l n e r & W e l l m a n , 1 9 9 7 a ; R i s b e r g , Wist, & B r e m n e s , 1998; V i n c e n t & F u r n h a m , 1996). R e c e n t work with w o m e n with breast c a n c e r h a s r e v e a l e d the importance of t h e s e beliefs, in addition to s u c h s o c i o b e h a v i o u r a l factors a s p e r c e i v e d control, s o c i a l support, previous u s e of A C T s , a n d p e r c e p t i o n s of n e e d ( B a l n e a v e s et al., 1999; B o o n et al., 2 0 0 0 ; Crocetti et al., 1 9 9 8 ; Truant & Bottorff, 1999). W h i l e this r e s e a r c h h a s provided a preliminary a n d descriptive u n d e r s t a n d i n g of  3 A C T u s e in the context of breast c a n c e r , what r e m a i n s u n a n s w e r e d is h o w beliefs a n d s o c i o b e h a v i o u r a l v a r i a b l e s interrelate a n d motivate individuals' treatment d e c i s i o n s related to A C T s . T h i s g a p in k n o w l e d g e u n d e r s c o r e s the n e e d for innovative r e s e a r c h that m o v e s b e y o n d the descriptive level a n d results in the d e v e l o p m e n t a n d testing of c o m p r e h e n s i v e theories of A C T u s e . T h e recent e m p h a s i s on the a s s o c i a t i o n b e t w e e n health beliefs a n d A C T u s e (Blais et al., 1997; B o o n , B r o w n , G a v i n , K e n n a r d , & Stewart, 1999; F u r n h a m & Kirkcaldy, 1996; M c G r e g o r & P e a y , 1996; Millar, 1997; V i n c e n t & F u r n h a m , 1996; Y a t e s et al., 1993) points t o w a r d s the p o s s i b l e r e l e v a n c e of s o c i a l cognitive theories in explaining A C T utilization.  Conceptual Issues Defining Alternative/Complementary  Therapies  S t u d i e s exploring the p r e v a l e n c e a n d motivations of A C T u s e h a v e b e e n m a r k e d by a lack of c o n s e n s u s with regards to the m a n n e r in w h i c h t h e r a p i e s are d e s c r i b e d , d e f i n e d , a n d c a t e g o r i z e d . A variety of labels h a s b e e n a p p l i e d to A C T s , including alternative, adjunctive,  unproven,  unconventional,  unorthodox,  questionable,  a n d quackery.  complementary, The language  u s e d to d e s c r i b e A C T s h a s b e e n d e s c r i b e d a s reflective of the cultural or political position of t h e s e t h e r a p i e s within a s o c i e t y ' s health c a r e s y s t e m rather than a d e s c r i p t i o n of the c a r e provided (Turner, 1998). L e r n e r (1994) further s u g g e s t e d that the terminology u s e d relates primarily to the d e g r e e to w h i c h a therapy h a s a c h i e v e d "acceptability" within the m e d i c a l e s t a b l i s h m e n t . A s s u c h , the l a n g u a g e u s e d to d e s c r i b e A C T s is by no m e a n s benign in intent or m e a n i n g . C a r e is n e e d e d in selecting n o m e n c l a t u r e that accurately a n d appropriately d e s c r i b e s A C T s a n d the positions t h e s e t h e r a p i e s hold within the cultural, e c o n o m i c , m e d i c a l , a n d e d u c a t i o n a l d o m a i n s of a society ( E s k i n a z i , 1998). A t the beginning s t a g e s of A C T r e s e a r c h , the term "alternative m e d i c i n e " g a i n e d p r o m i n e n c e within the b i o m e d i c a l community, most notably b e c a u s e of its u s e in two national s u r v e y s o n A C T u s e c o n d u c t e d in the United S t a t e s ( E i s e n b e r g et al., 1998; E i s e n b e r g et al., 1993). T h i s term w a s u s e d to d e s c r i b e the following: •  Interventions neither taught widely in m e d i c a l s c h o o l s , nor generally a v a i l a b l e in U S hospitals ( E i s e n b e r g et al., 1998; E i s e n b e r g et al., 1993),  •  T h e r a p i e s u s e d instead of W e s t e r n m e d i c i n e ( S p i e g e l , S t r o u d , & F y f e , 1998),  •  T h e r a p i e s c h a r a c t e r i z e d by their sociopolitical marginality (i.e., lack of support from m e d i c i n e a n d / o r g o v e r n m e n t ) ( K e l n e r & W e l l m a n , 1997b), a n d  •  T h e r a p i e s that are physiologically active, potentially harmful, a n d in conflict with m a i n s t r e a m c a r e ( C a s s i l e t h , 1998).  4 T h e s e d e s c r i p t i o n s of "alternative m e d i c i n e " w e r e problematic in s e v e r a l w a y s . F o r e m o s t , in placing "alternative m e d i c i n e " at the m a r g i n s of c o n v e n t i o n a l m e d i c i n e , there e x i s t e d a n underlying a s s u m p t i o n that the therapies w e r e u s e d solely within a culture in w h i c h the b i o m e d i c a l p a r a d i g m w a s dominant. T h i s a s s u m p t i o n failed to c o n s i d e r health c a r e practices on a w o r l d w i d e b a s i s w h e r e other distinct belief a n d practice s y s t e m s exist. S e c o n d l y , the w a y in w h i c h "alternative m e d i c i n e " w a s defined s u g g e s t e d that any therapy or intervention not c l a i m e d by c o n v e n t i o n a l W e s t e r n m e d i c i n e w o u l d be classified a s alternative (Wardell, 1994).  With  p h y s i c i a n s a n d other health c a r e p r o f e s s i o n a l s beginning to incorporate A C T content within their curricula, w h i c h t h e r a p i e s s h o u l d be included under the rubric "alternative m e d i c i n e " b e c o m e s i n c r e a s i n g l y difficult to determine. T h e u s e of the term " m e d i c i n e " within this description is a l s o of c o n c e r n b e c a u s e it l a c k s neutrality a n d j u x t a p o s e s t h e s e t h e r a p i e s with a p a r a d i g m f o c u s s e d on d i s e a s e rather than well b e i n g . T h e r e a l s o h a s b e e n the s u g g e s t i o n that "alternative m e d i c i n e " is representative of the co-optation of s e l e c t e d t h e r a p i e s by the c o n v e n t i o n a l m e d i c a l community. A n o t h e r popular label u s e d to define A C T s h a s b e e n " c o m p l e m e n t a r y " t h e r a p i e s or m e d i c i n e (Ernst, 1 9 9 5 ; Fairfield, E i s e n b e r g , D a v i s , L i b m a n , & Phillips, 1 9 9 8 ; F u r n h a m , V i n c e n t , & W o o d , 1995; Pietroni, 1994; Truant & Bottorff, 1999). C o n s i d e r e d to be m o r e respectful than "alternative m e d i c i n e " (Turner, 1998), " c o m p l e m e n t a r y " therapies h a v e b e e n d e s c r i b e d in numerous ways: •  T h e r a p i e s that c o m p l e m e n t the intelligent u s e of conventional a p p r o a c h e s d e e m e d scientifically to be efficacious (Lerner, 1994),  •  T h e r a p i e s that involve c o o p e r a t i v e effort b e t w e e n b i o m e d i c i n e a n d alternative practitioners (Nienstedt, 1998),  •  T h e r a p i e s u s e d in addition to a n d to b a l a n c e the s h o r t c o m i n g s of m a i n s t r e a m m e d i c i n e ( S p i e g e l et a l . , 1998),  •  T h e r a p i e s that are adjunctive to m e d i c a l c a r e (Kelner & W e l l m a n , 1997b), a n d  •  T h e r a p i e s that are pleasant, non-toxic, a n d beneficial to quality of life ( C a s s i l e t h , 1998).  S p e c i a l e m p h a s i s h a s b e e n p l a c e d on the distinction in m e a n i n g b e t w e e n "alternative" a n d " c o m p l e m e n t a r y " t h e r a p i e s a n d the c o e x i s t e n c e of both kinds of t h e r a p i e s ( C a s s i l e t h , 1 9 9 8 ; S p i e g e l et a l . , 1998). C o m p l e m e n t a r y t h e r a p i e s , for the most part, are c o n s i d e r e d to be m o r e adjunctive a n d supportive than alternative therapies. In particular, Milton (1998) s u g g e s t e d that within c a n c e r c a r e , c o m p l e m e n t a r y t h e r a p i e s are u s e d to m a n a g e c a n c e r s y m p t o m s a n d the s i d e effects of c o n v e n t i o n a l treatment. A c c o r d i n g l y , w h e n c o m p l e m e n t a r y t h e r a p i e s are u s e d to promote healing a n d quality of life, they are b e l i e v e d to work in t a n d e m with c o n v e n t i o n a l  m e d i c i n e . T h e u s e of the c o m p l e m e n t a r y therapy term a s a descriptor of A C T s , h o w e v e r , d o e s not e n c o m p a s s t h o s e therapies that are u s e d in p l a c e of c o n v e n t i o n a l m e d i c i n e . M o s t recently, a m o v e m e n t towards terminology that e n c o m p a s s e s both alternative a n d c o m p l e m e n t a r y a p p r o a c h e s to health c a r e h a s o c c u r r e d . In 1998, the U S N a t i o n a l Institutes of Health (NIH) Office of Alternative M e d i c i n e w a s r e - e s t a b l i s h e d a s the National C e n t e r for C o m p l e m e n t a r y a n d Alternative M e d i c i n e ( N C C A M ) . T h e following definition a n d description of c o m p l e m e n t a r y a n d alternative m e d i c i n e ( C A M ) is u s e d by the N C C A M :  A b r o a d d o m a i n of healing r e s o u r c e s that e n c o m p a s s e s all health s y s t e m s , modalities, a n d p r a c t i c e s a n d their a c c o m p a n y i n g theories a n d beliefs, other than t h o s e intrinsic to the politically dominant health s y s t e m of a particular society or culture in a given historical period. C A M i n c l u d e s all s u c h practices a n d i d e a s self-defined by their u s e r s a s preventing or treating illness or promoting health a n d well being. B o u n d a r i e s within C A M a n d b e t w e e n the C A M d o m a i n a n d the d o m a i n of the dominant s y s t e m are not a l w a y s s h a r p a n d d e f i n e d . ( A n o n y m o u s , 1997, p. 50)  C A M h a s a l s o b e e n defined by Ernst a n d C a s s i l e t h (1998) a s the:  D i a g n o s i s , treatment and/or prevention w h i c h c o m p l e m e n t s m a i n s t r e a m m e d i c i n e by contributing to a c o m m o n w h o l e , by satisfying a d e m a n d not met by orthodoxy, or by diversifying the c o n c e p t u a l f r a m e w o r k s of m e d i c i n e , (p. 777)  T o g e t h e r , t h e s e definitions position C A M within a s o c i a l , political, a n d cultural context a n d a c k n o w l e d g e the holistic nature putatively e m b o d i e d by m a n y traditional healing s y s t e m s . H o w e v e r , c o n c e r n s h a v e b e e n r a i s e d regarding the b r o a d n e s s of the term C A M a n d its application to t h e r a p i e s that have b e e n a c c e p t e d a s adjunctive interventions within c o n v e n t i o n a l m e d i c i n e (e.g., g r o u p therapy, relaxation t e c h n i q u e s ) ( C a s s i l e t h , 1998). Determining what t h e r a p i e s are a c c e p t e d a n d by w h o m continues to be a n elusive task b e c a u s e beliefs, attitudes, a n d k n o w l e d g e surrounding A C T s continue to unfold within m e d i c a l a n d lay c o m m u n i t i e s . A l t h o u g h the u s e of the term C A M r e p r e s e n t s a p r o g r e s s i v e s t e p t o w a r d s a c o m p r e h e n s i v e a n d contextual definition of t h e r a p i e s not traditionally included within a s o c i e t y ' s d o m i n a n t health c a r e s y s t e m , a m e d i c a l bias in l a n g u a g e is still evident. B a l n e a v e s (1996) attempted to a v o i d this b i a s by d e v e l o p i n g the a c r o n y m A C T s (alternative a n d c o m p l e m e n t a r y therapies). T h i s terminology not only c o n s i d e r s t h e r a p i e s that are u s e d to s u p p l e m e n t or r e p l a c e treatments offered by the dominant health c a r e s y s t e m , but a l s o s y m b o l i z e s c h o i c e a n d action on the part of health care c o n s u m e r s . In addition, the term A C T s allows both alternative  6 s y s t e m s of healing (e.g., Traditional C h i n e s e M e d i c i n e ) a n d individual t h e r a p i e s (e.g., a c u p u n c t u r e ) to be included u n d e r o n e appellation a n d a c k n o w l e d g e s the intervention of practitioners other than p h y s i c i a n s . W h i c h t h e r a p i e s are c o n s i d e r e d to be alternative, c o m p l e m e n t a r y , or c o n v e n t i o n a l , however, is d e p e n d e n t u p o n the relative h e g e m o n y of the b i o m e d i c a l p a r a d i g m within the society under study a n d the p e r s o n a l e x p e r i e n c e s of health c a r e c o n s u m e r s . Notwithstanding this ambiguity, the A C T terminology is u s e d in this study. Classifying Alternative/Complementary Therapies A variety of strategies have b e e n p r o p o s e d to o r g a n i z e a n d classify the h u n d r e d s of existing A C T s . T h e most often q u o t e d m e t h o d is the s e v e n category a p p r o a c h r e c o m m e n d e d by the N C C A M (Nienstedt, 1998), w h i c h i n c l u d e s the following: diet, nutrition, a n d lifestyle c h a n g e s ; m i n d / b o d y interventions; alternative s y s t e m s ; b i o e l e c t r o m a g n e t i c interventions; m a n u a l h e a l i n g ; p h a r m a c o l o g i c a l a n d biological t h e r a p i e s ; a n d herbal m e d i c i n e . T h e s e c a t e g o r i e s , h o w e v e r , h a v e b e e n criticized a s being too broad a n d a m b i g u o u s to permit definitive classification (Nienstedt, 1998). F o r e x a m p l e , although relaxation a n d meditation t e c h n i q u e s are traditionally c l a s s i f i e d u n d e r the rubric of mind/body interventions, they m a y a l s o play a n integral role within lifestyle c h a n g e s , s u c h a s s t r e s s reduction. A m o r e s p e c i f i c categorization s y s t e m h a s b e e n p r o p o s e d by the Ontario B r e a s t C a n c e r Information E x c h a n g e Project (1994) a n d c o n s i s t s of 15 distinct c l a s s e s of A C T s (see T a b l e 1). T h i s classification is particularly useful within the context of this dissertation r e s e a r c h , b e c a u s e it w a s d e v e l o p e d specifically to inform C a n a d i a n w o m e n living with breast c a n c e r . B e i n g able to classify t h e r a p i e s into their r e s p e c t i v e 1  traditions a l l o w s A C T u s e to be e x p l o r e d in a more refined m a n n e r a n d a c k n o w l e d g e s the range of t h e r a p i e s that exists. Why Study Alternative/Complementary Therapy Use in W o m e n with Breast C a n c e r ? T h e utilization of A C T s h a s b e e n e x a m i n e d a c r o s s g e n e r a l a n d d i s e a s e - s p e c i f i c populations, with c a n c e r ( B o o n et al., 2 0 0 0 ; D o w n e r et al., 1994; M o n t b r i a n d , 1 9 9 5 a ; Y a t e s et al., 1993), multiple s c l e r o s i s (Fawcett, S i d n e y , H a n s o n , & R i l e y - L a w l e s s , 1994), a n d H I V / A I D S ( P a w l u c h , C a i n , & Gillett, 1994; S i n g h et al., 1996) being a few e x a m p l e s . T h a t A C T s are being u s e d to a d d r e s s a variety of life-threatening a n d chronic conditions, in addition to g e n e r a l well b e i n g , is apparent. T h e d e v e l o p m e n t a n d testing of cognitive m o d e l s of A C T u s e c o u l d o c c u r in populations other than w o m e n living with breast c a n c e r a n d provide important insights into the underlying health beliefs a n d s o c i o b e h a v i o u r a l factors that influence treatment c h o i c e . T e s t i n g the application of the d e v e l o p e d m o d e l s within t h e s e populations is a n important future r e s e a r c h e n d e a v o u r , h o w e v e r , for the p u r p o s e s of this study, w o m e n with breast c a n c e r are the f o c u s .  This classification system includes therapies that are of particular interest to women living with breast cancer and, as such, is not a comprehensive list of A C T therapies. For example, spiritual therapies, such as prayer and laying on of hands, were not included. 1  f 7  Table 1. Classification of Alternative/Complementary Therapies Therapies  Category Natural Health Practices  Aromatherapy Ayurvedic medicine Herbalism Naturopathy  Homeopathy Native North American healing Traditional Chinese medicine  Herbal Therapies  Aloe Carnivora Coffee enema Essiac Alkaline/acid cleansing diet Gerson therapy  Hoxsey method Pau d'Arco Iscadora Ginseng Grape cure Metabolic therapy Macrobiotic diet Vitamin D Vitamin E Megavitamin therapy  Dietary Therapies  Vitamins  Minerals From Earth and S e a  Energy Life Force Therapies Movement Therapies  Vitamin A B vitamins Beta-carotene Vitamin C Calcium Selenium Alkylglycerols Canthaxanthin Evening primrose Acupuncture/acupressure Reiki T'ai Chi  Zinc Mushrooms Seaweed Shark Cartilage Polarity therapy Therapeutic touch Yoga  Chiropractic Massage Hypnosis Imagery A/isualization Meditation Art therapy  Reflexology  Cell extraction therapy Colonic irrigation  Urea  Oxygen Therapies  Ozone  Hydrogen Peroxide  Drugs  714-X Aspirin DMSO Bestatin Chondriana Coley's toxins  Enzyme therapy Bezaldehyde Chelation therapy Immuno-augmentative Isoprinosine  Physical Therapies Psychological Therapies Expressive Arts Therapies To and From the Body  Immune Boosters  Psychotherapy and counselling Relaxation Music therapy  therapy  Note. Adapted from Ontario Breast Cancer Information Exchange Project (1994). A guide to unconventional cancer therapies. Toronto, O N : Author.  This population has been chosen as a starting point to test models of ACT utilization for several reasons. Foremost, breast cancer is a pervasive disease in Canadian society. In the past decade, the incidence of breast cancer has risen steadily. One in nine women is now expected to develop this disease at some point in her lifetime, with approximately 19,500 new cases of  8 breast c a n c e r being d i a g n o s e d in 2001 ( N C I C , 2001). W h i l e breast c a n c e r mortality h a s d e c l i n e d slightly in recent y e a r s , breast c a n c e r r e m a i n s the s e c o n d leading c a u s e of c a n c e r d e a t h for C a n a d i a n w o m e n . In British C o l u m b i a , approximately 2 , 5 0 0 w o m e n w e r e d i a g n o s e d in 2001 ( N C I C , 2001). T h e s e statistics s u g g e s t that a significant n u m b e r of w o m e n in C a n a d a are living with, a n d dying from, this d i s e a s e . S e c o n d l y , the effects of breast c a n c e r on w o m e n and their families are e x t e n s i v e a n d profound. F o r m a n y w o m e n , living with breast c a n c e r is a traumatic, life-altering e x p e r i e n c e . T h e time from d i a g n o s i s to survival is fraught with uncertainty, d r a m a t i c p h y s i c a l c h a n g e s , a n d e m o t i o n a l u p h e a v a l (Bleiker, P o u w e r , v a n der P l o e g , Leer, & A d e r , 2 0 0 0 ; P e l u s i , 1 9 9 7 ; W a i n s t o c k , 1991). T h e s i d e effects of c o n v e n t i o n a l c a n c e r treatments e x p e r i e n c e d by s o m e w o m e n contribute to t h e s e feelings of distress. B r e a s t c a n c e r patients are a l s o f a c e d with existential i s s u e s , s u c h a s ascribing m e a n i n g to their illness (Luker, B e a v e r , Leinster, & O w e n s , 1996) a n d confronting a terminal p r o g n o s i s (Wainstock, 1991). G i v e n the p s y c h o s o c i a l distress a n d potential mortality a s s o c i a t e d with breast c a n c e r , w o m e n m a y s e e k treatment options other than t h o s e offered by c o n v e n t i o n a l m e d i c i n e . R e c e n t p r e v a l e n c e s t u d i e s h a v e confirmed that A C T s are u s e d by w o m e n living with breast c a n c e r , with reported p r e v a l e n c e rates b e t w e e n 1 7 % to 6 7 % ( B a l n e a v e s et al., 1999; B o o n et al., 2 0 0 0 ; Burstein et al., 1999; Crocetti et al., 1998; Morris et al., 2 0 0 0 ; M o s c h e n et a l . , 2 0 0 1 ; R e e s et al., 2 0 0 0 ; S a l m e n p e r a , 2 0 0 2 ; V a n d e C r e e k , R o g e r s , & Lester, 1999). C o m p a r e d to patients with other f o r m s of c a n c e r , w o m e n with breast c a n c e r are significantly m o r e likely to u s e s o m e form of alternative or c o m p l e m e n t a r y treatment (Morris et al., 2 0 0 0 ) . With s u c h a substantial n u m b e r of w o m e n u s i n g A C T s , the breast c a n c e r population offers a n interested, willing, a n d relevant milieu in w h i c h to c o n d u c t r e s e a r c h e x a m i n i n g the role of health beliefs a n d s o c i o b e h a v i o u r a l factors a s s o c i a t e d with A C T u s e . A n o t h e r r e a s o n for r e s e a r c h i n g A C T u s e in w o m e n with breast c a n c e r is b e c a u s e they h a v e d e m a n d e d it. At the National B r e a s t C a n c e r F o r u m in 1 9 9 3 , breast c a n c e r survivors a n d a d v o c a t e s rated A C T s a s o n e of the top priorities in terms of both efficacy s t u d i e s a n d b e h a v i o u r a l r e s e a r c h (National F o r u m on B r e a s t C a n c e r , 1994). A recent inquiry into the state of breast c a n c e r c a r e in British C o l u m b i a h a s given further support to the i m p o r t a n c e of A C T s to w o m e n living with this d i s e a s e (Trussler, 2001). R e c e n t initiatives through the National C a n c e r Institute of C a n a d a ' s C a n a d i a n B r e a s t C a n c e r R e s e a r c h Initiative ( C B C R I ) h a v e a l s o e m p h a s i z e d the r e l e v a n c e a n d importance of r e s e a r c h exploring A C T u s e within the C a n a d i a n breast c a n c e r c o m m u n i t y ( J a c o b s o n , 1996).  Research Purpose T h e m a i n p u r p o s e of this r e s e a r c h study w a s to d e v e l o p a n d test three cognitive m o d e l s of A C T utilization in w o m e n living with breast c a n c e r . In testing t h e s e m o d e l s , the influence of s e l e c t e d health beliefs (including p e r c e i v e d risk, p e r c e i v e d efficacy of A C T s , p e r c e i v e d barriers to A C T u s e , a n d p e r c e i v e d control) a n d s o c i o b e h a v i o u r a l factors (including p r e v i o u s A C T u s e , e n c o u r a g e m e n t to u s e A C T s , s o c i o d e m o g r a p h i c characteristics) on w o m e n ' s treatment d e c i s i o n s related to A C T s w a s e x p l o r e d . G u i d e d by the theoretical u n d e r p i n n i n g s of the Health Belief M o d e l ( J a n z & B e c k e r , 1984; R o s e n s t o c k , 1974b), the three m o d e l s t e s t e d in this r e s e a r c h a l l o w e d w o m e n ' s u s e of A C T s to be e x a m i n e d a c r o s s three different health contexts: prevention, amelioration, a n d restoration. In d e v e l o p i n g three unique m o d e l s , the r e l e v a n c e of health beliefs a n d s o c i o b e h a v i o u r a l factors within different contexts of A C T u s e w a s e x p l o r e d a n d the intent of therapy u s e w a s investigated. A s e c o n d a r y aim of the study w a s to d e t e r m i n e the t y p e s of t h e r a p i e s u s e d by w o m e n with breast c a n c e r a n d the d e g r e e of c o m m i t m e n t e x t e n d e d t o w a r d s A C T s . T h e following r e s e a r c h q u e s t i o n s w e r e a d d r e s s e d in the study:  •  How are health beliefs and selected sociobehavioural factors associated with the use of ACTs by women living with breast cancer within preventive, ameliorative, and restorative health contexts?  •  To what extent do the preventive, ameliorative, use in a breast cancer population?  and restorative  •  What are the prevalence, breast cancer in British  cost of ACT use by women  pattern, and financial Columbia?  models  explain  ACT  living with  Summary A s the p r e v a l e n c e of a n d interest in alternative a n d c o m p l e m e n t a r y t h e r a p i e s ( A C T s ) h a v e g r o w n within g e n e r a l a n d c a n c e r populations, it h a s b e c o m e increasingly important to u n d e r s t a n d w h y individuals m a k e s u c h c h o i c e s a n d what underlying beliefs influence their treatment d e c i s i o n m a k i n g . S u c h k n o w l e d g e will inform future r e s e a r c h priorities in A C T s , a s s i s t in the d e v e l o p m e n t of appropriate c o u n s e l l i n g a n d e d u c a t i o n a l strategies for patients a n d c o n v e n t i o n a l h e a l t h - c a r e providers, a n d improve the clinical c a r e of p e o p l e using A C T s . F o c u s s i n g o n the e x p e r i e n c e of w o m e n living with breast c a n c e r , this r e s e a r c h study w a s u n d e r t a k e n to d e v e l o p a n d test three cognitive m o d e l s that e x a m i n e d the effects of s e l e c t e d health beliefs a n d s o c i o b e h a v i o u r a l factors on w o m e n ' s d e c i s i o n s to u s e A C T s . In the following chapter, a n o v e r v i e w of the literature pertaining to A C T u s e in g e n e r a l a n d c a n c e r populations, including the characteristics of A C T u s e r s a n d motivating factors of A C T u s e , is p r o v i d e d . Later c h a p t e r s review the theoretical f r a m e w o r k guiding the d e v e l o p m e n t of the three cognitive  models, the design and procedures of the study, and the descriptive and structural modelling research findings. The final chapter provides a concise discussion of the results and implications of the study.  11  Chapter 2  Literature Review The first section of this review provides a summary of the diverse literature on alternative and complementary therapy (ACT) use. This section focusses on recent sociobehavioural research that has examined ACT use within the general, breast cancer and other cancer populations. Research findings related to the prevalence of ACT use within general and cancer populations, the demographic and other predisposing characteristics of ACT consumers within general and cancer populations, and the motivations underlying the decision to use ACTs by individuals with cancer and within the general population are discussed. In the second section, a concise review of research examining treatment decision making in women with breast cancer is presented. Together, these two sections provide the substantive foundation for the development and testing of three cognitive models of ACT use within a sample of women living with breast cancer. The majority of literature reviewed was drawn from a search of the research literature published in the past two decades, encompassing the fields of nursing, medicine, psychology, and sociology, (i.e., CINAHL, Medline, PsychLit, and Sociofile). Excluded from this review, for the most part, are non-English and unpublished literature. Non-research articles (e.g., editorials, letters to the editors, opinion articles) included in the review consist primarily of discussion pieces that provide a theoretical or social context to the research exploring the use of ACTs.  Alternative and Complementary Therapy Use in General and Cancer Populations The following section provides a detailed review and critique of sociobehavioural ACT research. The main areas of discussion include the prevalence of ACT use across general and cancer populations, the personal and social characteristics of ACT consumers, the influencing role of health beliefs in determining treatment choice, and other motivators of ACT use.  12  Prevalence of Alternative/Complementary Therapy Use in the General Population P r e v i o u s e p i d e m i o l o g i c a l r e s e a r c h h a s r e v e a l e d that b e t w e e n 1 5 % to 6 8 % of the g e n e r a l population in North A m e r i c a , E u r o p e , a n d the M i d d l e E a s t h a v e u s e d at least o n e type of A C T in their lifetime ( A n g u s R e i d G r o u p , 1997; Bernstein & S h u v a l , 1 9 9 7 ; E i s e n b e r g et al., 1998; E i s e n b e r g et a l . , 1 9 9 3 ; G r e n f e l l , P a t e l , & R o b i n s o n , 1998; M a c L e n n a n , W i l s o n , & Taylor, 1996; Millar, 1 9 9 7 ;