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

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ALTERNATIVE AND COMPLEMENTARY THERAPY USE BY WOMEN LIVING WITH BREAST CANCER: A TEST OF THREE MODELS by LYNDA GEORGIE B A L N E A V E S BSc, The University of Manitoba, 1990 BN, The University of Manitoba, 1994 MN, The University of Manitoba, 1996 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE D E G R E E OF DOCTOR OF PHILOSOPHY in THE FACULTY OF G R A D U A T E STUDIES (School of Nursing, Faculty of Applied Science) We accept this thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA 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 overal l a im of this study w a s to enhance knowledge of the exper ience of alternative and complementary therapy (ACT) use in w o m e n living with breast cancer . Th is w a s ach ieved by deve lop ing and test ing three cognit ive mode ls of the causa l relat ionships be tween se lec ted health bel iefs, soc iobehav ioura l factors, demograph ic character ist ics, and A C T utilization among w o m e n with breast cancer . The preva lence and patterns of A C T use were a lso examined . A retrospect ive, correlat ional survey des ign w a s used in this study. A random samp le of 650 w o m e n with s tage I or II breast cancer w a s se lec ted from the Brit ish C o l u m b i a C a n c e r Registry, of which 577 w o m e n were eligible for study participation. Comp le ted self-report quest ionnai res were rece ived from 334 w o m e n . T h e survey inc luded quest ions to a s s e s s perce ived risk of breast cancer recurrence, symptom distress, perce ived eff icacy of A C T s , barr iers to A C T use , perce ived control, and A C T util ization. Descr ipt ive statist ics were used to descr ibe A C T util ization. Structural equat ion model l ing w a s used to test the three mode ls of A C T use ac ross the contexts of preventive, ameliorat ive, and restorative health behaviour. A substant ia l proportion of w o m e n with breast cancer was found to be using a variety of A C T s . V i tamin/minera l supp lements , herbal remedies , and spiritual therapies were the most common ly reported A C T s , with the majority of w o m e n using fewer than five therapies fol lowing their breast cancer d iagnos is and spending under $50.00 a month on A C T s . W o m e n most often sought information about A C T s from lay sou rces , including family and fr iends and print med ia . T h e majority of w o m e n had d isc losed their use of A C T s to at least one of their convent ional health care provider(s). W o m e n who had used A C T s prior to their breast cance r d iagnos is and had rece ived encouragement from signif icant others to use A C T s were found to have greater commitment to A C T s . Heal th beliefs were found to explain a minimal amount of va r iances in women ' s commitment to A C T s . Except ions included perceived eff icacy of A C T s with regards to restoring wel l being and perceived control over well being. W o m e n who bel ieved A C T s to be ef f icacious in improving physical and mental well being and perce ived themse lves to be respons ib le for their wel l being were more likely to be committed to A C T s . T h e study f indings suggest that A C T use is a w idespread phenomenon in breast cancer populat ions that is inf luenced most strongly by past health behaviour and the norms and preferences that exist within women 's soc ia l groups. T h e s e f indings also contribute to our understanding of A C T use by w o m e n with breast cancer as being a reflection of their commitment to sel f -care and wel lness. The need for further research that exp lores the roles of family members and health care providers in treatment dec is ions related to A C T s and educat ional and counse l ing strategies that support informed treatment dec is ion mak ing are impl icat ions of this study. i i i Table of Contents Abst ract ii Tab le of Conten ts iii List of T a b l e s ix List of F igures xii A c k n o w l e d g e m e n t s , xiii C H A P T E R O N E - I N T R O D U C T I O N 1 Backg round to the Study 1 Concep tua l Issues 3 Defining A l ternat ive/Complementary Therap ies 3 Class i fy ing Al ternat ive/Complementary Therap ies 6 W h y Study A l ternat ive/Complementary Therapy U s e in W o m e n with Breast C a n c e r ? 6 R e s e a r c h Pu rpose 9 S u m m a r y 9 C H A P T E R T W O - L I T E R A T U R E R E V I E W 11 Alternat ive and Complementa ry Therapy U s e in Gene ra l and C a n c e r Popu la t ions 11 P reva lence of A l ternat ive/Complementary Therapy U s e in the G e n e r a l Populat ion 12 A s s e s s m e n t of A l ternat ive/Complementary Therapy U s e 12 Sampl ing Issues 12 Retrospect ive Sel f -Repor t M e a s u r e s 13 Al ternat ive/Complementary Therapy Util ization Pat terns 13 P reva lence of A l ternat ive/Complementary Therapy U s e in C a n c e r Popula t ions 16 A l ternat ive /Complementary Therapy U s e by W o m e n Living with Breast C a n c e r 22 Character is t ics of C o n s u m e r s of A l ternat ive/Complementary Therap ies 24 Demograph ic Profi le within Genera l Populat ions 25 Demograph ic Profi le within C a n c e r Populat ions 26 Prev ious Health Exper iences 27 Heal th Bel iefs and Al ternat ive/Complementary Therapy U s e 27 Heal th Bel iefs within Genera l Populat ion 28 Heal th Bel iefs within C a n c e r Populat ions 33 Heal th Bel iefs within the Breast C a n c e r Populat ion 35 Percept ions of N e e d for C a r e 36 S u m m a r y of the Ro le of Health Bel iefs 37 iv Other Factors Assoc ia ted with A l ternat ive/Complementary Therapy U s e 38 Soc ia l Suppor t 38 Contro l 40 Treatment Dec is ion Mak ing by W o m e n Living with Breast C a n c e r 42 Convent iona l Treatment Dec is ion Mak ing 42 Treatment Dec is ion Mak ing and Al ternat ive/Complementary Therap ies 45 Chap te r S u m m a r y 47 C H A P T E R T H R E E - T H E O R E T I C A L M O D E L S 50 Mode ls of Heal th Behav iour 50 Behav ioura l Mode l of Health C a r e Util ization 51 Heal th L o c u s of Contro l 51 Theory of R e a s o n e d Act ion 52 S u m m a r y 52 T h e Heal th Bel ief Mode l 52 Theoret ica l Mode l s of Commi tment to A l ternat ive/Complementary Therap ies 55 T h e Prevent ive Mode l of A l ternat ive/Complementary Therapy U s e 55 T h e Amel iorat ive Mode l of A l ternat ive/Complementary Therapy U s e 61 T h e Restorat ive Mode l of A l ternat ive/Complementary Therapy U s e 65 Chap te r S u m m a r y 71 C H A P T E R F O U R - M E T H O D S A N D P R O C E D U R E S . . 72 R e s e a r c h Des ign 72 S a m p l e 72 Sett ing and Part ic ipants 72 S a m p l e S i z e , 73 Recru i tment of Part ic ipants 77 Survey Comple t ion Ra tes 78 Data Col lec t ion 81 Modi f ied Total Des ign Method 81 Pilot Test ing 82 Operat ional izat ion of Study Const ruc ts 83 Demograph ics 84 Encouragement to U s e Al ternat ive/Complementary Therap ies 84 Perce i ved Likel ihood of Recur rence 85 Perce i ved Symp tom Dist ress 86 Perce ived R isk of Harm 87 Pe rce i ved Severi ty of Harm 87 Perce i ved Ef f icacy of A l ternat ive /Complementary Therap ies 88 Pe rce i ved Barr iers to A l ternat ive/Complementary Therapy U s e 89 Perce i ved Contro l 90 Commi tment to A l ternat ive/Complementary Therap ies 92 Data Ana l ys i s 101 Miss ing Data 101 Structural Equat ion Model l ing 101 Ethical Cons idera t ions 102 C H A P T E R F I V E - D E S C R I P T I V E F I N D I N G S 105 T h e S a m p l e 105 Demograph ic , D i sease , and Treatment Character is t ics of Non -Responden t s 105 Demograph ic Character is t ics of the Responden ts 105 D i s e a s e Character is t ics of the Responden ts 106 Convent iona l C a n c e r Treatment History of the Responden ts 106 Di f ferences between the Responden ts and Non -Responden ts 109 U s e of A l ternat ive /Complementary Therap ies by W o m e n with Breast C a n c e r 110 P reva lence of A l ternat ive/Complementary Therapy U s e 110 P reva lence of A l ternat ive/Complementary Therapy U s e by Therapy Type 112 Effect of Demograph ic Character is t ics on A l ternat ive/Complementary Therapy U s e . 1 1 3 Pat terns of A l ternat ive/Complementary Therapy U s e 114 N u m b e r of A l ternat ive/Complementary Therap ies U s e d 114 Pr ior Exper ience with A l ternat ive /Complementary Therap ies 115 Initiation of A l ternat ive/Complementary Therapy U s e 115 Current U s e v o f A l ternat ive/Complementary Therap ies 117 F requency of A l ternat ive/Complementary Therapy U s e 118 Effort Involved in Us ing Al ternat ive/Complementary Therap ies 118 C o s t of A l ternat ive/Complementary Therapy U s e 119 S o u r c e s of Information about A l ternat ive/Complementary Therap ies 120 D isc losure of A l ternat ive/Complementary Therapy U s e 121 C H A P T E R S I X - M O D E L P R E P A R A T I O N 122 Prevent ive Mode l of A l ternat ive/Complementary Therapy U s e 122 Examinat ion of Miss ing Data 122 vi Tes ts of Normali ty 126 Univar iate Normali ty 126 Bivariate Normali ty 128 Conf i rmatory Factor Ana lys i s of the Measuremen t Mode l 131 Inclusion of W o m e n with Breast C a n c e r Recur rence and Other C a n c e r Diagnos is . . . . 132 Measu remen t Sca l ing and Reliabi l i t ies 134 S u m m a r y of the Preparat ion of the Prevent ive Mode l of A l ternat ive /Complementary Therapy U s e 137 Amel iorat ive Mode l of A l ternat ive/Complementary Therapy U s e 137 Examinat ion of Miss ing Data 139 Tes ts of Normali ty 140 Univariate Normality 140 Bivar iate Normali ty 142 Conf i rmatory Factor Ana lys i s of the Measuremen t Mode l 143 Inclusion of W o m e n with Breast C a n c e r Recur rence and Other C a n c e r D iagnos is . . . . 146 Measu remen t Sca l ing and Reliabi l i t ies 148 S u m m a r y of the Preparat ion of the Amel iorat ive Mode l of A l ternat ive /Complementary Therapy U s e 148 Restorat ive Mode l of A l ternat ive/Complementary Therapy U s e 151 Examinat ion of Miss ing Data 151 Tes ts of Normali ty 153 Univariate Normali ty 153 Bivar iate Normali ty 155 Conf i rmatory Factor Ana lys i s of the Measuremen t Mode l 156 Inclusion of W o m e n with Breast C a n c e r Recur rence and Other C a n c e r Diagnos is . . . . 157 Measu remen t Sca l ing and Reliabi l i t ies 159 S u m m a r y of the Preparat ion of the Restorat ive Mode l of A l ternat ive /Complementary Therapy U s e 160 C H A P T E R S E V E N - S T R U C T U R A L E Q U A T I O N M O D E L L I N G R E S U L T S 162 Prevent ive Mode l of A l ternat ive/Complementary Therapy U s e 162 Structural Mode l 1a 162 Mode l Modi f icat ions to Mode l 1a 164 Structural Mode l 1b 165 Mode l Modif icat ions to Mode l 1b 165 Structural Mode l 1c 166 Mode l Modif icat ions to Mode l 1c 166 vii Structural Mode l 1d 166 Mode l Modi f icat ions to Mode l 1d 166 Structural Mode l 1e 167 Mode l Modi f icat ions to Mode l 1e 167 Structural Mode l 1f 167 Mode l Modif icat ions to Mode l 1f 168 Bootstrapping of Mode l 1f 168 Direct and Indirect Effects in Structural Mode l 1f 170 S u m m a r y of Mode l Test ing of the Prevent ive Mode l of A l ternat ive /Complementary Therapy U s e 173 Amel iorat ive Mode l of A l ternat ive/Complementary Therapy U s e 174 Structural Mode l 2b 174 Mode l Modif icat ions to Mode l 2b 176 Structural Mode l 2c 176 Mode l Modif icat ions to Mode l 2c 177 Structural Mode l 2d 177 Mode l Modif icat ions to Mode l 2d 177 Structural Mode l 2e 178 Mode l Modi f icat ions to Mode l 2e 178 Bootst rapping of Mode l 2e 178 Direct and Indirect Effects in Structural Mode l 2e 181 S u m m a r y of Mode l Test ing of the Amel iorat ive Mode l of A l ternat ive /Complementary Therapy U s e 183 Restorat ive Mode l of A l ternat ive/Complementary Therapy U s e 183 Structural Mode l 3a 183 Mode l Modif icat ions to Mode l 3a 185 Structural Mode l 3b 185 Mode l Modi f icat ions to Mode l 3b 186 Structural Mode l 3c 186 Mode l Modif icat ions to Mode l 3c 186 Structural Mode l 3d 187 Mode l Modif icat ions to Mode l 3d 187 Bootst rapping of Mode l 3d 188 Direct and Indirect Effects in Structural Mode l 3d 189 S u m m a r y of Mode l Test ing of the Restorat ive Mode l of A l ternat ive /Complementary Therapy U s e 192 v i i i 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 I M P L I C A T I O N S 193 D iscuss ion of the F ind ings 193 A l ternat ive /Complementary Therapy U s e by W o m e n Living with Breast C a n c e r 193 Preva lence of A l ternat ive/Complementary Therapy U s e 194 C o m m o n l y U s e d Therap ies 195 Patterns of U s e 197 C o s t of A l ternat ive/Complementary Therapy U s e 199 S o u r c e s of Information about A C T s and Disc losure of U s e 200 T h e Ro le of Heal th Bel iefs in Alternative and Complementa ry Therapy U s e 202 Prevent ive Mode l of Alternative and Complementary Therapy U s e 203 Amel iorat ive Mode l of Alternative and Complementary Therapy U s e 207 Restorat ive Mode l of Alternative and Complementa ry Therapy U s e 209 C o m p a r i s o n of the Three Mode ls of A l ternat ive/Complementary Therapy U s e 212 Contr ibut ions and Strengths of the Study 215 Theoret ica l Cons idera t ions 215 Methodolog ica l Cons idera t ions 216 Limitat ions of the Study 217 Study Des ign 217 Ret rospect ive Data 217 Measu remen t Issues 218 General izabi l i ty 221 Implications for Pract ice 222 Recommenda t i ons for Future R e s e a r c h 224 Conc lus ion 229 R E F E R E N C E S 230 A P P E N D I C E S 248 Append ix 1 - Fami ly Phys ic ian Letter 248 Append ix 2 - Letter of Invitation 249 Append ix 3 - C o n s e n t Form 250 Append ix 4 - Quest ionna i re C o v e r Letter 252 Append ix 5 - S tudy Quest ionnai re 253 Append ix 6 - Fo l low-up Letter 279 Append ix 7 - Survey A s s e s s m e n t Form 280 Append ix 8 - Comp le te A l ternat ive/Complementary Therapy List (Liberal Definition) 281 Append ix 9 - Cova r i ance Matr ices for Mode ls of A l ternat ive/Complementary Therapy U s e . . 283 ix List of Tables 1. C lass i f ica t ion of A l ternat ive/Complementary Therap ies 7 2. S u m m a r y Data from Preva lence Stud ies of A C T U s e in C a n c e r Popu la t ions 18 3. Survey Comple t ion Ra tes 78 4. R e a s o n s for Ineligibility 78 5. Inclusion and Exc lus ion Select ion Cri ter ia 79 6. R e a s o n s for Non-Part ic ipat ion of El igible W o m e n 79 7. List of Sca les / I tems in Final Study Quest ionnai re 95 8. Study Const ruc ts and Assoc ia ted Instruments in the Prevent ive, Amel iorat ive, and Restorat ive Mode ls 100 9. Demograph ic Character is t ics of the Responden ts . . . . 107 10. Convent iona l C a n c e r Treatment History of the Responden ts 108 11. D isc repanc ies between Responden ts ' Se l f -Repor t and B C C a n c e r Regist ry Data on Convent iona l Treatment History 109 12. Demograph ic and D i sease Character is t ics of Responden ts and N o n - R e s p o n d e n t s . . 1 1 0 13. P reva lence of A l ternat ive/Complementary Therapy U s e 111 14. Most Frequent ly Repor ted Al ternat ive/Complementary Therap ies 112 15. P reva lence of A l ternat ive/Complementary Therapy U s e by Therapy Type 113 16. Assoc ia t i on of Demograph ic Character is t ics with A l ternat ive /Complementary Therapy U s e 114 17. N u m b e r of A l ternat ive/Complementary Therap ies U s e d 115 18. Assoc ia t i on between Prior A l ternat ive/Complementary Therapy U s e and the U s e of A l ternat ive/Complementary Therap ies Fol lowing Breast C a n c e r D iagnos is . . . . 116 19. A l ternat ive /Complementary Therapy Initiation by Therapy Type 116 20. C o m p a r i s o n of Therapy Initiation by Therapy Type 117 21 . Assoc ia t i on between Therapy Initiation and Current U s e of Al ternat ive/ Comp lemen ta ry Therap ies at T ime of Survey Comple t ion 118 22. F requency of A l ternat ive/Complementary Therapy U s e 118 23. Effort Involved in Us ing Al ternat ive/Complementary Therap ies by Therapy Type 119 24. Repor ted S o u r c e s of Information about A l ternat ive/Complementary Therap ies 121 25. S u m m a r y of M iss ing Data in the Prevent ive Mode l of A l ternat ive /Complementary Therapy U s e 124 X 26. F requency of Imputed Miss ing Data for A l ternat ive /Complementary Therapy U s e Var iab les by Therapy Type 125 27. Univar iate Stat ist ics for E x o g e n o u s Var iab les (Prevent ive Mode l - Mode l 1a) 126 28. Univar iate Stat ist ics for Endogenous Var iab les (Prevent ive Mode l - Mode l 1a) 127 29. Bivar iate Normali ty Vio lat ions for Exogenous and E n d o g e n o u s Var iab les in the Prevent ive Mode l (Model 1a) Fol lowing Transformat ions 129 30. Univar iate Stat ist ics for Rev i sed and New Var iab les (Prevent ive Mode l - Mode l 1a). 130 31 . Bivar iate Normali ty Vio lat ions for E x o g e n o u s and Endogenous Var iab les in the Prevent ive Mode l (Model 1a) Fol lowing Transformat ions 131 32. Goodness -o f -F i t Indices for the Measu remen t Mode l of the Prevent ive Mode l (Model 1a 132 33. Factor Load ings and t-Values for the Measurement Mode l of the Prevent ive Mode l . . 133 34. M e a n Di f ferences between W o m e n with and without Breast C a n c e r Recu r rence on Prevent ive Mode l (Model 1a) Var iab les 134 35. M e a n Di f ferences between W o m e n with and without Other C a n c e r D iagnos is on Prevent ive Mode l (Model 1a) Var iab les 135 36. S u m m a r y of M iss ing Data in the Amel iorat ive Mode l of A l ternat ive /Complementary Therapy U s e (Model 2a) 140 37. Univar iate Stat ist ics for E x o g e n o u s Var iab les (Ameliorat ive Mode l - Mode l 2a) . . . 141 38. Univar iate Stat ist ics for Endogenous Var iab les (Ameliorat ive Mode l - Mode l 2a) 142 39. Bivar iate Normali ty Vio lat ions for Exogenous and E n d o g e n o u s Var iab les in the Amel iorat ive Mode l (Model 2a) Fol lowing Transformat ions 143 40. Goodness -o f -F i t Indices for the Measu remen t Mode l of the Amel iorat ive M o d e l (Model 2a and Mode l 2b) 144 4 1 . Fac to r Load ings and f-values for the Measurement Mode l of the Amel iorat ive M o d e l (Mode l 2 a and M o d e l 2b) 145 42 . M e a n Di f ferences between W o m e n with and without breast cancer recurrence on the Amel iorat ive Mode l (Model 2b) Var iab les 146 43 . M e a n Di f ferences between W o m e n with and without other cancer d iagnos is on the Amel iorat ive Mode l (Model 2b) Var iab les 147 44. Error V a r i a n c e s in the Amel iorat ive Mode l of A l ternat ive/Complementary Therapy U s e . ( M o d e l 2b) 149 45 . S u m m a r y of M iss ing Data in the Restorat ive Mode l of A l ternat ive /Complementary Therapy U s e (Model 3a) 152 46 . Univar iate Stat ist ics for E x o g e n o u s Var iab les (Restorat ive M o d e l - M o d e l 3a) 153 47. Univar iate Stat ist ics for Endogenous Var iab les (Restorat ive Mode l - Mode l 3a) 154 XI 48. Bivar iate Normali ty Vio lat ions for E x o g e n o u s and E n d o g e n o u s Var iab les in the Restorat ive Mode l Fol lowing Transformat ions 156 49 . Goodness -o f -F i t Indices for the Measu remen t Mode l of the Restorat ive Mode l (Model 3a) 156 50. Factor Load ings and f-values for the Measuremen t Mode l of the Restorat ive Mode l (Model 3a) 157 51 . M e a n Dif ference between W o m e n with and without Breast C a n c e r Recu r rence on the Restorat ive Mode l (Model 3a) Var iab les 158 52. M e a n Dif ference between W o m e n with and without Other C a n c e r D iagnos is on the Restorat ive Mode l (Model 3a) Var iab les 159 53. Error Va r i ance in the Restorat ive Mode l of A l ternat ive/Complementary Therapy U s e (Model 3a) 160 54. Goodness -o f -F i t Indices for Sequent ia l Modi f icat ions of the Prevent ive M o d e l of A l ternat ive /Complementary Therapy U s e 165 55. Pa ramete r Est imates for Mode l 1f (Prevent ive Model) 171 56. Direct and Indirect Effects from Structural Mode l 1f (Prevent ive Model ) 171 57. Goodness -o f -F i t Indices for Sequent ia l Modif icat ions of the Amel iorat ive Mode l of A l ternat ive /Complementary Therapy U s e 174 58. Paramete r Est imates for Mode l 2d (Ameliorat ive Model) 179 59. Direct and Indirect Effects from Structural Mode l 2d (Ameliorat ive Model ) 182 60. Goodness -o f -F i t Indices for Sequent ia l Modif icat ions of the Restorat ive Mode l of A l ternat ive /Complementary Therapy U s e 186 61. Pa ramete r Es t imates for Mode l 3d (Restorat ive Model) 188 62. Direct and Indirect Effects from Structural Mode l 3d (Restorat ive Model ) 190 63. Major Study F ind ings and Implications 225 xii List of Figures 1. Prevent ive Mode l of A l ternat ive/Complementary Therapy U s e by W o m e n Living with Breast C a n c e r 56 2. Amel iorat ive Mode l of A l ternat ive/Complementary Therapy U s e by W o m e n Living with Breast C a n c e r 63 3. Restorat ive Mode l of A l ternat ive/Complementary Therapy U s e by W o m e n Living with Breast C a n c e r 67 4. F low D iagram of the Deve lopment of the Final Dataset prior to Randomiza t ion 74 5. F low D iagram of the Recrui tment P r o c e s s 80 6. Transformat ion of Perce ived Contro l Items 91 7. Total Monthly Cos t of Current A l ternat ive/Complementary Therapy U s e (Liberal Definit ions 120 8. Mode l 1a - Prevent ive U s e of A l ternat ive/Complementary Therap ies 138 9. Mode l 2b - Amel iorat ive U s e of A l ternat ive/Complementary Therap ies 150 10. Mode l 3a - Restorat ive U s e of A l ternat ive/Complementary Therap ies 161 11. Structural Mode l 1 a - Prevent ive U s e of A l ternat ive/Complementary Therap ies 163 12. Structural Mode l 1 f - Prevent ive U s e of A l ternat ive/Complementary Therap ies 172 13. Structural Mode l 2b - Amel iorat ive U s e of A l ternat ive/Complementary Therap ies 175 14. Structural Mode l 2d - Amel iorat ive U s e of A l ternat ive/Complementary Therap ies 180 15. Structural Mode l 3a - Restorat ive U s e of A l ternat ive/Complementary Therap ies 184 16. Structural Mode l 3c - Restorat ive U s e of A l ternat ive/Complementary Therap ies 191 x i i i Acknowledgements Al though there is just one person listed at the front of this dissertat ion, there are many others that have contributed to what you are about to read. Foremost , I wou ld like to exp ress my s incere grati tude to my doctoral dissertat ion commit tee, Drs. J o a n Bottorff, P a m e l a Ratner, G r e g His lop, and Caro l Herbert for their kind gu idance and except ional mentor ing during the past six years . It w a s a long road, but your encourag ing words and thoughtful comments pushed me through the tough t imes and cha l lenged me to keep open to different perspect ives. T o my partner A l lan Brett, you were there from the beginning of this journey and have cheered me on through the late nights, the never-ending deadl ines, and the t imes when putting a sen tence together w a s a feat unto itself. Thank you for your love and pat ience - I promise no more deg rees ! T o my parents, Georg ie and L e s Ba lneaves , this dissertat ion reflects the determinat ion and conf idence you instil led in me to pursue my dreams, even the ones that sca re me. Thank you for a lways being there and cheer ing me on. To my " B C " parents, Bill and D ianna Brett, I c a m e to B C to get my P h D and never thought that I would end up with an ex tended family. Thank you for open ing your hearts to me and shar ing your home. A n d for my fr iends, B renda , Ca ro l , Ruth, Caro l ine , and A n n e Mar ie, my s incere gratitude for the wine, whine, and love that you were a lways ready to share. I wou ld a lso like to acknowledge the generous support I received throughout my studies from a variety of organizat ions, including the National Health R e s e a r c h Deve lopment P rogram, the British C o l u m b i a Health R e s e a r c h Foundat ion, 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 Nurses Foundat ion, the C a n a d i a n Assoc ia t ion of Nu rses in Onco logy , the Nat ional C a n c e r Institute of C a n a d a , the University of Brit ish Co lumb ia , and U B C S c h o o l of Nurs ing. A n d to the w o m e n who took the time to participate in this research , my deepes t thanks for your wi l l ingness to share your exper iences and for helping us better understand the treatment cho ices that you are faced with. You r stories cont inue to inspire me to work towards finding ways to better care for you and your family members . 1 Chapter 1 Introduction In recent years , there has been a remarkable increase in interest and use of therapies that are cons idered to be beyond the realm of convent ional medica l care. In a recent survey conducted by the F rase r Institute (Ramsay , Walker , & A lexander , 1999), nearly three quarters of C a n a d i a n s surveyed had used treatment that w a s alternative or complementary to their al lopathic care at s o m e point in their l ives. O n e group that has been voca l in its support and advocacy of alternative and complementary therapies (ACTs) has been w o m e n with breast cancer . In a document recently publ ished by the B C / Y u k o n Chap te r of the C a n a d i a n Breast C a n c e r Foundat ion (Trussler, 2001), consumers identified A C T s as playing a central role in the support ive breast care strategy. With w o m e n with breast cancer compr is ing one of the largest categor ies of cance r survivors in C a n a d a (National C a n c e r Institute of C a n a d a [NCIC] , 2001) , the impact of A C T s on provincial health care sys tems may be significant. A s the movement towards integration of A C T s into convent ional cancer care has ga ined momentum, researchers have f ocussed on determining what soc ia l and behavioural factors inf luence the treatment dec is ions of individuals living with cancer . Whi le much has been uncovered by this research , what remains to be deve loped is a comprehens ive , theoretical model of A C T util ization. Background to the Study Interviews with w o m e n living with breast cancer have revealed A C T s to be integral to their exper iences with this l ife-threatening d i sease (Boon et al . , 1999; G ray et a l . , 1997; Truant, 1998). For s o m e w o m e n , A C T s are a means of preserving hope when faced with the uncertainty of their prognosis (Truant & Bottorff, 1999). Fo r others, the dec is ion to use A C T s reflects a des i re to regain control over their health and to assert their i ndependence within the b iomedica l heal th-care sys tem (Montbriand, 1995a). W o m e n with breast cancer who choose A C T s have a lso been motivated by speci f ic goa ls related to their d i sease and recovery, 2 including the improvement of their immune sys tem, the management of adverse effects of convent ional cance r treatments, and the restoration of their physical and emot ional wel l being (Crocett i et al . , 1998). Despi te the limited number of women who have reported using A C T s in the hope of curing their breast cancer (Morris, Johnson , Homer, & Wal ts , 2000) and as a rep lacement for convent ional cancer care (Burstein, Ge lber , Guadagno l i , & W e e k s , 1999), convent ional health professionals and researchers have exp ressed concern regarding the use of these therapies (Beyerste in, 1997; Damkier, E lverdam, G l a s d a m , J e n s e n , & R o s e , 1998; Davidoff, 1998; Durant, 1998). Their concern is not without justif ication b e c a u s e there has been limited study of the eff icacy and safety of A C T s in relation to cance r care (Tagliaferri, C o h e n , & Tripathy, 2001) and s o m e suggest ion that potentially harmful interactions with convent ional t reatments may exist (Decker, 2000; J a c o b s o n & Verret, 2001). A recent study of w o m e n with ear ly-stage breast cancer (Burstein et al . , 1999) ra ised addit ional concerns when w o m e n using A C T s were found to report higher levels of psychologica l d istress and anxiety than non-users . R e s e a r c h e r s have been caut ious in relating A C T use to increased psycho log ica l morbidity (Hol land, 1999), instead suggest ing that cancer patients may turn to A C T s to treat the d ist ress that has been not add ressed by the convent ional heal th-care sys tem. Wi th nearly one half of w o m e n with breast cancer choos ing not to d i scuss their treatment dec is ions about A C T s with their convent ional heal th-care providers (Adler & Fosket , 1999; Ba lneaves , Kr ist janson, & Tataryn, 1999), opportunit ies to d i scuss concerns about A C T s and satisfact ion with convent ional ca re are often not real ized in cl inical sett ings. C o n c e r n s about the safety of A C T s and the possibil ity that A C T use may function as a marker for d is t ress and dissat isfact ion with care have resulted in a large body of research f ocussed on determining which individuals are most likely to utilize A C T s . In both the genera l populat ion (E isenberg , 1997; Ke lner & We l lman , 1997a; Millar, 1997) and ac ross cance r d iagnoses (Crocett i et a l . , 1998; Downer et al . , 1994; Ernst & Cass i l e th , 1998), a distinct profile of A C T consumers has been revealed. Soc iodemograph ic factors, such as age, gender , educat ion, income, and a history of chronic i l lness, have been assoc ia ted with A C T utilization (Blais, Ma iga , & Aboubaca r , 1997; E isenberg et al. , 1998; L e r n e r & Kennedy , 1992). R e s e a r c h has a lso examined the role of cognit ive factors and belief sys tems in the dec is ion to use A C T s . Most striking has been the associat ion between beliefs about health and i l lness and treatment dec is ions related to A C T s (Furnham & Bond , 2000; Furnham & Kirkcaldy, 1996; Ke lner & We l lman , 1997a; R isberg , Wist , & B remnes , 1998; V incent & Furnham, 1996). Recen t work with w o m e n with breast cancer has revealed the importance of these beliefs, in addit ion to such soc iobehav ioura l factors as perceived control, soc ia l support, previous use of A C T s , and percept ions of need (Ba lneaves et al . , 1999; Boon et al . , 2000; Crocett i et al . , 1998; Truant & Bottorff, 1999). Wh i le this research has provided a preliminary and descr ipt ive understanding of 3 A C T use in the context of breast cancer , what remains unanswered is how beliefs and soc iobehav ioura l var iab les interrelate and motivate individuals' treatment dec is ions related to A C T s . Th is gap in knowledge underscores the need for innovative research that moves beyond the descript ive level and results in the development and testing of comprehens ive theor ies of A C T use. T h e recent emphas is on the assoc ia t ion between health beliefs and A C T use (Blais et al . , 1997; Boon , Brown, G a v i n , Kennard , & Stewart, 1999; Furnham & Kirkcaldy, 1996; M c G r e g o r & P e a y , 1996; Millar, 1997; V incent & Furnham, 1996; Ya tes et al . , 1993) points towards the poss ib le re levance of soc ia l cognit ive theories in explaining A C T util ization. Conceptual Issues Defining Alternative/Complementary Therapies Stud ies explor ing the preva lence and motivat ions of A C T use have been marked by a lack of c o n s e n s u s with regards to the manner in which therapies are descr ibed , def ined, and categor ized. A variety of labels has been appl ied to A C T s , including alternative, complementary, adjunctive, unproven, unconventional, unorthodox, questionable, and quackery. T h e language used to descr ibe A C T s has been descr ibed as reflective of the cultural or political posit ion of these therap ies within a society 's health care sys tem rather than a descr ipt ion of the care provided (Turner, 1998). Lerner (1994) further sugges ted that the terminology used relates primarily to the degree to which a therapy has ach ieved "acceptabi l i ty" within the medica l establ ishment. A s such , the language used to descr ibe A C T s is by no m e a n s benign in intent or mean ing . C a r e is needed in select ing nomenclature that accurately and appropriately descr ibes A C T s and the posi t ions these therapies hold within the cultural, economic , med ica l , and educat ional doma ins of a society (Esk inaz i , 1998). At the beginning s tages of A C T research, the term "alternative medic ine" ga ined prominence within the b iomedical community, most notably because of its use in two national surveys on A C T use conducted in the United States (E isenberg et al . , 1998; E isenberg et al . , 1993). Th is term w a s u s e d to descr ibe the fol lowing: • Interventions neither taught widely in medica l schoo ls , nor general ly avai lable in U S hospi tals (E isenberg et al . , 1998; E isenberg et al . , 1993), • Therap ies used instead of Wes te rn medic ine (Spiegel , Stroud, & Fyfe, 1998), • Therap ies character ized by their sociopol i t ical marginality (i.e., lack of support from medic ine and/or government) (Kelner & We l lman , 1997b), and • Therap ies that are physiological ly act ive, potentially harmful, and in conflict with mains t ream care (Cass i le th , 1998). 4 T h e s e descr ipt ions of "alternative medic ine" were problematic in severa l ways . Foremost , in placing "alternative medic ine" at the margins of convent ional medic ine, there ex is ted an underlying assumpt ion that the therapies were used solely within a culture in which the b iomedica l parad igm was dominant. This assumpt ion failed to cons ider health care pract ices on a wor ldwide bas is where other distinct belief and practice sys tems exist. Second ly , the way in which "alternative medic ine" w a s def ined sugges ted that any therapy or intervention not c la imed by convent ional Wes te rn medic ine would be c lassi f ied as alternative (Wardel l , 1994). With phys ic ians and other health care professionals beginning to incorporate A C T content within their curr icula, which therapies should be included under the rubric "alternative medic ine" b e c o m e s increasingly difficult to determine. The use of the term "medic ine" within this descr ipt ion is a lso of concern because it lacks neutrality and jux taposes these therapies with a paradigm focussed on d i sease rather than well being. There a lso has been the suggest ion that "alternative medic ine" is representat ive of the co-optat ion of se lected therapies by the convent ional medica l communi ty . Ano ther popular label used to define A C T s has been "complementary" therapies or medic ine (Ernst, 1995; Fairf ield, E isenberg , Davis , L ibman, & Phi l l ips, 1998; Fu rnham, Vincent , & W o o d , 1995; Pietroni , 1994; Truant & Bottorff, 1999). Cons ide red to be more respectful than "alternative medic ine" (Turner, 1998), "complementary" therapies have been descr ibed in numerous ways : • Therap ies that complement the intelligent use of convent ional app roaches d e e m e d scientif ical ly to be eff icacious (Lerner, 1994), • Therap ies that involve cooperat ive effort between biomedic ine and alternative practit ioners (Nienstedt, 1998), • Therap ies used in addit ion to and to ba lance the shor tcomings of mains t ream medic ine (Sp iege l et a l . , 1998), • Therap ies that are adjunctive to medica l care (Kelner & We l lman , 1997b), and • Therap ies that are pleasant, non-toxic, and beneficial to quality of life (Cass i le th , 1998). Spec ia l emphas i s has been p laced on the distinction in meaning between "alternative" and "complementary" therapies and the coex is tence of both kinds of therapies (Cass i le th , 1998; Sp iege l et a l . , 1998). Complementa ry therapies, for the most part, are cons idered to be more adjunctive and support ive than alternative therapies. In particular, Milton (1998) sugges ted that within cance r care, complementary therapies are used to manage cancer symptoms and the s ide effects of convent ional treatment. Accord ing ly , when complementary therapies are used to promote heal ing and quality of life, they are bel ieved to work in tandem with convent ional medic ine. T h e use of the complementary therapy term as a descr iptor of A C T s , however, does not e n c o m p a s s those therapies that are used in p lace of convent ional medic ine. Most recently, a movement towards terminology that e n c o m p a s s e s both alternative and complementary app roaches to health care has occurred. In 1998, the U S Nat ional Institutes of Health (NIH) Off ice of Alternative Medic ine was re-establ ished as the Nat ional Cen te r for Comp lementa ry and Alternative Medic ine ( N C C A M ) . The fol lowing definition and descr ipt ion of complementary and alternative medic ine ( C A M ) is used by the N C C A M : A broad domain of heal ing resources that e n c o m p a s s e s all health sys tems, modal i t ies, and pract ices and their accompany ing theor ies and beliefs, other than those intrinsic to the politically dominant health sys tem of a particular society or culture in a given historical per iod. C A M includes all such pract ices and ideas self-def ined by their users as prevent ing or treating i l lness or promoting health and well being. Boundar ies within C A M and between the C A M domain and the domain of the dominant sys tem are not a lways sharp and def ined. (Anonymous, 1997, p. 50) C A M has a lso been def ined by Ernst and Cass i le th (1998) as the: D iagnos is , treatment and/or prevention which complements mains t ream medic ine by contributing to a common whole, by satisfying a d e m a n d not met by orthodoxy, or by diversifying the conceptual f rameworks of medic ine, (p. 777) Together , these definit ions posit ion C A M within a soc ia l , political, and cultural context and acknowledge the holistic nature putatively embod ied by many traditional heal ing sys tems. However , concerns have been ra ised regarding the b roadness of the term C A M and its appl icat ion to therapies that have been accepted as adjunctive interventions within convent ional medic ine (e.g., group therapy, relaxation techniques) (Cass i le th , 1998). Determining what therapies are accep ted and by whom cont inues to be an elusive task b e c a u s e beliefs, attitudes, and knowledge surrounding A C T s cont inue to unfold within medica l and lay communi t ies . A l though the use of the term C A M represents a progressive step towards a comprehens ive and contextual definition of therapies not traditionally included within a society 's dominant health care sys tem, a medica l bias in language is still evident. Ba lneaves (1996) at tempted to avoid this b ias by develop ing the acronym A C T s (alternative and complementary therapies). Th is terminology not only cons iders therapies that are used to supp lement or rep lace treatments offered by the dominant health care sys tem, but a lso symbo l i zes cho ice and action on the part of health care consumers . In addit ion, the term A C T s al lows both alternative 6 sys tems of heal ing (e.g., Tradit ional C h i n e s e Medic ine) and individual therapies (e.g., acupuncture) to be included under one appel lat ion and acknowledges the intervention of practit ioners other than physic ians. W h i c h therapies are cons idered to be alternative, complementary , or convent ional , however, is dependent upon the relative hegemony of the b iomedica l paradigm within the society under study and the personal exper iences of health care consumers . Notwithstanding this ambiguity, the A C T terminology is used in this study. Classifying Alternative/Complementary Therapies A variety of strategies have been proposed to organize and classi fy the hundreds of exist ing A C T s . T h e most often quoted method is the seven category approach recommended by the N C C A M (Nienstedt, 1998), which inc ludes the fol lowing: diet, nutrition, and lifestyle changes ; mind/body interventions; alternative sys tems; b ioelectromagnet ic interventions; manua l heal ing; pharmacolog ica l and biological therapies; and herbal medic ine. T h e s e categor ies, however, have been crit icized as being too broad and ambiguous to permit definitive c lassi f icat ion (Nienstedt, 1998). For example , although relaxation and meditat ion techn iques are traditionally c lass i f ied under the rubric of mind/body interventions, they may a lso play an integral role within lifestyle changes , such as st ress reduction. A more speci f ic categor izat ion sys tem has been proposed by the Ontar io Breast C a n c e r Information E x c h a n g e Project (1994) and cons is ts of 15 distinct c l asses of A C T s (see Tab le 1). Th is classi f icat ion is particularly useful within the context of this dissertat ion research, because it was deve loped speci f ical ly to inform C a n a d i a n w o m e n living with breast cancer 1 . Be ing able to classify therapies into their respect ive tradit ions al lows A C T use to be explored in a more refined manner and acknow ledges the range of therapies that exists. Why Study Alternative/Complementary Therapy Use in Women with Breast Cancer? T h e util ization of A C T s has been examined across general and d isease-spec i f i c populat ions, with cance r (Boon et al . , 2000; Downer et al . , 1994; Montbr iand, 1995a; Ya tes et a l . , 1993), multiple sc leros is (Fawcett, S idney , H a n s o n , & R i ley -Law less , 1994), and HIV /A IDS (Pawluch , C a i n , & Gillett, 1994; S ingh et al . , 1996) being a few examp les . That A C T s are being used to add ress a variety of l ife-threatening and chronic condit ions, in addit ion to genera l well be ing, is apparent. T h e development and testing of cognit ive models of A C T use could occur in populat ions other than w o m e n living with breast cancer and provide important insights into the underlying health beliefs and soc iobehav ioura l factors that inf luence treatment cho ice. Test ing the appl icat ion of the deve loped mode ls within these populat ions is an important future research endeavour , however, for the purposes of this study, w o m e n with breast cance r are the focus. 1 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. f 7 Table 1. Classification of Alternative/Complementary Therapies Category Therapies Natural Health Practices Aromatherapy Ayurvedic medicine Herbalism Naturopathy Homeopathy Native North American healing Traditional Chinese medicine Herbal Therapies Aloe Carnivora Coffee enema Essiac Hoxsey method Pau d'Arco Iscadora Ginseng Dietary Therapies Alkaline/acid cleansing diet Gerson therapy Grape cure Metabolic therapy Macrobiotic diet Vitamins Vitamin A B vitamins Beta-carotene Vitamin C Vitamin D Vitamin E Megavitamin therapy Minerals Calcium Selenium Zinc From Earth and Sea Alkylglycerols Canthaxanthin Evening primrose Mushrooms Seaweed Shark Cartilage Energy Life Force Therapies Acupuncture/acupressure Reiki Polarity therapy Therapeutic touch Movement Therapies T'ai Chi Yoga Physical Therapies Chiropractic Massage Reflexology Psychological Therapies Hypnosis Imagery A/isualization Meditation Psychotherapy and counselling Relaxation Expressive Arts Therapies Art therapy Music therapy To and From the Body Cell extraction therapy Colonic irrigation Urea Oxygen Therapies Ozone Hydrogen Peroxide Drugs 714-X Aspirin DMSO Enzyme therapy Bezaldehyde Chelation therapy Immune Boosters Bestatin Chondriana Coley's toxins Immuno-augmentative therapy Isoprinosine Note. Adapted from Ontario Breast Cancer Information Exchange Project (1994). A guide to unconventional cancer therapies. Toronto, ON: 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 cancer being d iagnosed in 2001 (NCIC , 2001). Whi le breast cance r mortality has dec l ined slightly in recent years, breast cancer remains the second leading c a u s e of cancer death for C a n a d i a n w o m e n . In British Co lumb ia , approximately 2,500 w o m e n were d iagnosed in 2001 (NCIC , 2001). T h e s e statistics suggest that a signif icant number of w o m e n in C a n a d a are living with, and dying from, this d i sease . Second ly , the effects of breast cancer on women and their famil ies are extens ive and profound. For many women , living with breast cancer is a traumatic, life-altering exper ience. T h e t ime from d iagnos is to survival is fraught with uncertainty, dramat ic phys ica l changes , and emot ional upheava l (Bleiker, Pouwer , van der P loeg , Leer, & Ader , 2000; Pe lus i , 1997; Wains tock , 1991). T h e s ide effects of convent ional cancer treatments exper ienced by s o m e w o m e n contribute to these feel ings of d istress. Breast cancer patients are a lso faced with existential i ssues , such as ascr ib ing meaning to their i l lness (Luker, Beaver , Leinster, & O w e n s , 1996) and confronting a terminal prognosis (Wainstock, 1991). G i ven the psychosoc ia l d istress and potential mortality assoc ia ted with breast cancer , w o m e n may seek treatment opt ions other than those offered by convent ional medic ine. Recen t preva lence studies have conf i rmed that A C T s are used by w o m e n living with breast cancer , with reported preva lence rates between 17% to 6 7 % (Ba lneaves et al . , 1999; Boon et al . , 2000; Burstein et al . , 1999; Crocett i et al . , 1998; Morris et al . , 2000; M o s c h e n et a l . , 2001 ; R e e s et al . , 2000; S a l m e n p e r a , 2002; V a n d e C r e e k , Rogers , & Lester, 1999). C o m p a r e d to patients with other forms of cancer , w o m e n with breast cancer are significantly more likely to use s o m e form of alternative or complementary treatment (Morris et al. , 2000). With such a substant ial number of w o m e n using A C T s , the breast cancer populat ion offers an interested, wil l ing, and relevant mil ieu in which to conduct research examin ing the role of health beliefs and soc iobehav ioura l factors assoc ia ted with A C T use. Another reason for researching A C T use in w o m e n with breast cance r is b e c a u s e they have d e m a n d e d it. At the National Breast C a n c e r Forum in 1993, breast cancer survivors and advoca tes rated A C T s as one of the top priorities in terms of both eff icacy studies and behavioural research (National Forum on Breast Cance r , 1994). A recent inquiry into the state of breast cance r care in Brit ish Co lumb ia has given further support to the importance of A C T s to w o m e n living with this d i sease (Trussler, 2001). Recent initiatives through the Nat ional C a n c e r Institute of C a n a d a ' s C a n a d i a n Breast C a n c e r R e s e a r c h Initiative ( C B C R I ) have a lso e m p h a s i z e d the re levance and importance of research exploring A C T use within the C a n a d i a n breast cance r communi ty ( Jacobson , 1996). Research Purpose T h e main purpose of this research study w a s to develop and test three cognit ive mode ls of A C T utilization in w o m e n living with breast cancer . In testing these mode ls , the inf luence of se lec ted health beliefs (including perceived risk, perceived eff icacy of A C T s , perce ived barriers to A C T use, and perceived control) and soc iobehav ioura l factors (including previous A C T use, encouragement to use A C T s , soc iodemograph ic characterist ics) on women ' s treatment dec is ions related to A C T s was explored. Gu ided by the theoretical underpinnings of the Health Bel ief Mode l (Janz & Becker , 1984; Rosens tock , 1974b), the three mode ls tested in this research a l lowed women ' s use of A C T s to be examined across three different health contexts: prevent ion, amel iorat ion, and restoration. In developing three unique mode ls , the re levance of health beliefs and soc iobehav ioura l factors within different contexts of A C T use w a s explored and the intent of therapy use w a s invest igated. A secondary aim of the study w a s to determine the types of therapies used by w o m e n with breast cancer and the degree of commitment ex tended towards A C T s . The following research quest ions were add ressed 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, and restorative models explain ACT use in a breast cancer population? • What are the prevalence, pattern, and financial cost of ACT use by women living with breast cancer in British Columbia? Summary A s the preva lence of and interest in alternative and complementary therapies ( A C T s ) have grown within genera l and cancer populat ions, it has become increasingly important to understand why individuals make such cho ices and what underlying beliefs inf luence their treatment dec is ion making. S u c h knowledge will inform future research priorities in A C T s , assist in the deve lopment of appropriate counsel l ing and educat ional strategies for patients and convent ional heal th-care providers, and improve the cl inical care of people using A C T s . Focuss ing on the exper ience of w o m e n living with breast cancer , this research study was undertaken to deve lop and test three cognit ive mode ls that examined the effects of se lec ted health bel iefs and soc iobehav ioura l factors on women 's dec is ions to use A C T s . In the fol lowing chapter, an overv iew of the literature pertaining to A C T use in genera l and cance r populat ions, including the character ist ics of A C T users and motivating factors of A C T use , is provided. Later chapters review the theoretical f ramework guiding the development of the three cognit ive 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 Prev ious epidemiologica l research has revealed that between 1 5 % to 6 8 % of the general populat ion in North Amer i ca , Europe , and the Middle Eas t have used at least one type of A C T in their lifetime (Angus Re id Group , 1997; Bernstein & Shuva l , 1997; E isenberg et al . , 1998; E isenberg et a l . , 1993; Grenfel l , Pate l , & Rob inson , 1998; M a c L e n n a n , W i l son , & Taylor, 1996; Millar, 1997; Murray & Shepherd , 1993; R a m s a y et a l . , 1999). Despi te the wide variat ion in utilization est imates, this research suggests that the use of A C T s is a substant ial health care phenomenon within industr ial ized countr ies. T h e disparity among util ization est imates can be attributed, in part, to severa l methodological i ssues, including the methods of a s s e s s m e n t of A C T use (Harris & R e e s , 2000), sampl ing i ssues , and the retrospective nature of the studies. E a c h of these i ssues is d i scussed , fol lowed by a compar ison of A C T utilization patterns in the genera l populat ion. Assessment of Alternative/Complementary Therapy Use There has been a lack of c o n s e n s u s among researchers about how A C T use should be a s s e s s e d . Fo r s o m e researchers , the use of therapies that are marginal to convent ional medica l treatment and that are general ly unavai lable within the majority of mains t ream heal th-care institutions has been cons idered to be indicative of A C T use (E isenberg , 1997; E isenberg et al . , 1993; Murray & Shephe rd , 1993; R a m s a y et a l . , 1999). In contrast, others researchers have used only consul tat ions with al ternat ive/complementary practit ioners as being representat ive of A C T use (Millar, 1997). With over 5 0 % of A C T consumers using treatments without consul t ing an al ternat ive/complementary practit ioner (E isenberg et al . , 1998), examin ing only the use of a l ternat ive/complementary practit ioners may significantly underest imate the actual use of A C T s . Further, there has been variation in the way in which individuals are asked about A C T use. A l though the majority of researchers have used pre-determined lists of A C T s and alternative practit ioners to uncover A C T use (E isenberg et a l . , 1998; E isenberg et al . , 1993; Millar, 1997; Murray & Shephe rd , 1993; R a m s a y et a l . , 1999), researchers have a lso used open-ended quest ions about treatment cho ices (Grenfel l et al . , 1998). This diversity in data col lect ion methods limits compar i sons ac ross studies and b iases participants' r esponses . Samp l ing Issues Seve ra l i ssues ar ise related to the sampl ing methods used in previous surveys of A C T use. Whi le random sampl ing w a s employed in the majority of preva lence studies examin ing A C T use in genera l populat ions (Angus Re id Group , 1997; Bernste in & Shuva l , 1997; E isenberg et al . , 1998; E isenberg et al. , 1993; R a m s a y et al. , 1999; T h o m a s , Carr , Wes t l ake , & Wi l l iams, 1991), s o m e researchers (Grenfel l et a l . , 1998; Kristof, Schlumpf, W y s s , & Sai ler , 1998; Murray & Shephe rd , 1993) used conven ience samp les to determine the pervas iveness of A C T use in the genera l public. The latter sampl ing strategy ra ises concerns regarding the general izabi l i ty of 13 the f indings. Further, the rel iance on conven ience samp les to determine preva lence rates of A C T use , coup led with the identification of A C T use as being the subject of interest of the research , may have resulted in an over-representat ion of individuals who had used A C T s . E i senberg et a l . (1998, 1993) attempted to avoid this bias by making no ment ion of A C T s in their initial recruitment of part icipants. Another methodological issue is the recruitment methods used in s o m e of the preva lence studies. The use of te lephone and/or household interviews that were limited to those part icipants able to speak Engl ish may have restricted the participants recruited in terms of soc ioeconomic status, ethnicity, and residency. A s a consequence , the study f indings may have limited general izabi l i ty to d isadvantaged and ethnic populat ions (E isenberg et al . , 1998; E isenberg et a l . , 1993; Millar, 1997; R a m s a y et al . , 1999). Further, the recruitment of part icipants through convent ional or alternative health-care sys tems (Grenfel l et al . , 1998; Kristof et a l . , 1998; Murray and Shepherd , 1993; T h o m a s , et a l . , 1991) may have potentially under- or over- represented the prevalence of A C T use within genera l populat ions. For example , it is not surpr is ing that Kristof et al. (1998) found over 9 6 % of at tendees at an alternative health fair had used A C T s at s o m e time in their l ives. A final sampl ing issue that has not been addressed well in past preva lence studies has been whether the sample s ize w a s adequate to produce preva lence rates of A C T use that could be appl ied with conf idence to the general populat ion. S a m p l e s ize calculat ions or conf idence intervals are provided in only a few of the research art icles rev iewed (E isenberg et al . , 1998; E isenberg et a l . , 1993; M a c L e n n a n et a l . , 1996) Ret rospect ive Se l f -Repor t M e a s u r e s T h e use of retrospective self-report measu res in the majority of A C T survey research may have limited the validity of the f indings. For example , Murray and Shephe rd (1993) asked part icipants recruited from a general medica l pract ice about the A C T s they had tried in the previous 10 years . S u c h a lengthy time span inc reases the possibil i ty of memory distortion (i.e., recall bias) and inaccurate reporting of A C T use. A further limitation of retrospect ive studies on A C T use has been the cross-sect ional approach of the research, which limits causa l interpretations of the data and prevents cohort effects from being clearly identif ied. Prospect ive research on A C T use is needed to capture the dynamic nature of A C T use and to provide more prec ise m e a s u r e s of preva lence and inc idence rates. A l ternat ive /Complementary Therapy Util ization Patterns G i ven the methodological limitations of past prevalence research , E i senberg et al . ' s (1998, 1993) nat ional ly-representat ive household te lephone surveys in the Uni ted States have been the most scientif ically r igorous investigations to date. Us ing random-digit sampl ing and the random select ion of one household member over the age of 18 years , E i senberg et al. (1993) 14 conducted te lephone interviews with 1,539 participants about their use of A C T s . O n e in three part icipants w a s found to have used at least one type of A C T (selected from a pre-determined list of 16 A C T s ) in the past 12 months. The most commonly used A C T s included relaxation techn iques (13%), chiropract ics (10%), and m a s s a g e (7%). Of those using A C T s , 6 4 % did so without consul t ing an al ternat ive/complementary practit ioner (e.g., over- the-counter herbal products) and 7 2 % c h o s e not to inform their primary care phys ic ian about their use of A C T s . Overa l l , E i senberg et al. (1993) est imated out-of-pocket expendi tures for therapies and practit ioner visits in the United States to total $13.7 billion ( U S funds). In a similarly des igned survey conducted in 1997, E isenberg et al. (1998) found that A C T use inc reased by 2 5 % s ince 1990, with 4 2 % of participants over the age of 18 years (N = 2,055) reporting the use of A C T s in the previous 12 months. The most frequently reported A C T s inc luded relaxation techniques (16%), herbal medic ine (12%), m a s s a g e (11%), and chiropract ics (11%). T h e total number of visits to an al ternat ive/complementary practit ioner inc reased by 4 7 % , with 4 6 % of A C T consumers reporting consultat ions with an alternative/ complementary practitioner. No dif ference w a s noted in the fol low-up study with regards to d isc losure of A C T use to convent ional heal th-care providers. Expendi tures for A C T s were found to have inc reased by 4 5 % s ince 1990, with an est imated $21.2 billion (US funds) being spent on therapies and practit ioners. R e s e a r c h conducted in C a n a d a has found prevalence rates similar to E isenberg et al. (1998). In 1997, the A n g u s R e i d G r o u p re leased to the publ ic the f indings of a nat ion-wide te lephone survey of 1,200 Canad ian adults 18 years and older (Angus Re id Group , 1997) . 2 Over four in ten (42%) C a n a d i a n s reported using A C T s , with Brit ish Co lumb ia residents being most likely to report A C T use (56%). Chi ropract ics (59%), herbology (23%), acupuncture (22%), and homeopathy (18%) were the most commonly reported A C T s . Further information on the des ign of the study, particularly related to sampl ing procedures, would have been helpful to further evaluate the scientif ic merit of this survey. In a simi lar study, the F rase r Institute conducted 1,500 te lephone interviews with a randomly se lec ted samp le of Canad ian adults in 1997 (Ramsay et al . , 1999). Househo lds were se lec ted using random-digit dial ing, with respondents being randomly se lec ted based on the "birthday method" in which the person with the most recent birthday w a s interviewed. T h e interview w a s structured similar to E isenberg 's (1998, 1993), surveys with respondents being asked to c h o o s e the therapies they had used in the past 12 months and in their lifetime from a randomized list of 22 A C T s . Near ly three quarters of the respondents indicated that they had 2 While specifics were not provided in the press release related to the sampling procedure, the data were weighted statistically to ensure the sample's age/sex composition reflected that of the actual Canadian population based on the 1996 Census. The researchers reported that with the Canadian-wide sample of 1,200, surveys such as this were accurate within +2.8 percentage points, 19 times out of 20. 15 used at least one A C T in their lifetime, with Brit ish Co lumb ians (85%) being the most likely to report the use of A C T s . Chi ropract ic care w a s the most frequently reported therapy (36%), fol lowed by relaxation and m a s s a g e (23%), prayer (21%), and herbal remedies (17%). The f indings of this survey were compromised by a low response rate (25.7%). A compar ison between respondents and non-respondents on se lec ted demograph ic , behavioura l , and attitudinal character ist ics w a s conducted and no select ion bias was observed , however, this compar i son must be cons idered with caut ion as less than 4 % of non-respondents took part in the fol low-up interview. Highl ighting the d isc repanc ies in prevalence rates as a result of study des ign i ssues , Mil lar (1997) found that only 1 5 % of C a n a d i a n s 15 years and older reported consul t ing an al ternat ive/complementary practit ioner in the previous year. Us ing data from the Nat ional Populat ion Heal th Survey (1994-1995) (Catl in & Wil l , 1992; T a m b a y & Cat l in , 1995), Mil lar (1997) a s s e s s e d the use of practit ioners such as m a s s a g e therapists, homeopaths , naturopaths, acupunctur ists, and chiropractors. Reg iona l di f ferences in the use of a l ternat ive/complementary practit ioners were apparent, with only 5 % of respondents living in the At lant ic prov inces reporting alternative practit ioner consul tat ions compared to 1 2 % of respondents in Ontar io, and 2 1 % of respondents in both the prairie prov inces (Mani toba, S a s k a t c h e w a n and Alberta) and British Co lumb ia . The d iscrepancy in preva lence rates found in this study compared to E isenberg et al. 's studies (1998, 1993), the A n g u s Re id G r o u p poll (1997) , and the F rase r Institute survey (Ramsay et al . , 1999) can be attributed to di f ferences in how A C T s were a s s e s s e d (i.e., practit ioner vs. therapies). In a s s e s s i n g only the use of a l ternat ive/complementary practit ioners, Mil lar (1997) may have substantial ly underest imated the use of A C T s in C a n a d a . A l though the A C T prevalence rates obtained by Murray and Shephe rd (1993) from a nonrandom conven ience samp le (N = 233) in the Uni ted K ingdom must be v iewed with caut ion, the percentage of individuals who had used A C T s was similar to rates reported in the United States (E isenberg et al . , 1998; E isenberg et al. , 1993) and C a n a d a (Angus Re id Group , 1997; R a m s a y et al . , 1999). Just over one third of men (34%) and 4 6 % of w o m e n reported trying at least one form of A C T in the past 10 years , with manipulat ive treatments (i.e., massage ) , homeopathy, and acupuncture being the most commonly reported therapies. Despi te being limited by a nonrandom, conven ience sample of patients (N = 300) attending three outpatient medica l cl inics (diabetes, rheumatology, and chest) , Grenfel l et al. 's (1998) study of A C T use in the United K ingdom provides further insight into the use of A C T s within the genera l populat ion. Approx imate ly 6 8 % of respondents were found to have used at least one type of A C T in the past 12 months, with acupuncture, homeopathy, herbal therapies, osteopathy, and Ayurved ic remedies being the most popular therapies. P reva lence of A C T use 16 var ied by ethnicity, with B lack (sic) (78%) and A s i a n (77%) patients reporting higher use of A C T s than Whi te (sic) patients (53%). C a u c a s i a n patients were found to prefer acupuncture and homeopathy, whi le B lacks and A s i a n s used more herbal therapies. T h e high preva lence of A C T use reported by part icipants w a s attributed to the populat ion studied, wh ich cons is ted of the chronical ly ill and had a high proportion of ethnic minorit ies. Further information about the number of recent immigrants within the sample would have been helpful in evaluat ing the high preva lence of A C T use. Despi te numerous methodological l imitations, past prevalence research has revealed A C T use to be a cl inically signif icant occur rence within the genera l populat ion. U s e of therapies that are si tuated outside of the convent ional medica l sys tem appears to be increas ing, with physica l therapies being most prominent within North Amer i can populat ions. Prevalence of Alternative/Complementary Therapy Use in Cancer Populations C o m p a r e d to genera l populat ions, greater d ivergence in the preva lence of A C T use has been found in people living with cancer , with est imates ranging between 7% to 8 1 % (Boon et a l . , 2000; C o s s , M c G r a t h , & Cagg iano , 1998; Crocett i et a l . , 1998; Downer et a l . , 1994; E idenger & Schap i ra , 1984; Ernst & Cass i le th , 1998; Fe igen & Tiver, 1986; Go lds te in , C h a o , Va lent ine, C h a b o n , & Dav is , 1991; L e r n e r & Kennedy , 1992;M. Mil ler et al . , 1998; Montbr iand, 1995a; Oneschuk , Fennel l , Hanson , & Bruera, 1998; R e e s et al . , 2000; R isberg , K a a s a , Wist , & M e l s o m , 1997; R isberg , Lund, W i s t e t a l . , 1995; Sa lmenpe ra , 2002; S w i s h e r et a l . , 2002 ; Ya tes et al . , 1993). Th is variability can be attributed, in part, to the methodological l imitations previously outl ined, including measurement and sampl ing i ssues . More specif ical ly, Ernst and Cass i le th (1998) cited the lack of specif icity and inconsistent definit ions of A C T s used by cance r patients and researchers as "contributing significantly to this variability" (p. 780). For example , by labell ing all therapies that are rece ived outs ide of convent ional heal th-care sett ings as A C T s (e.g., sel f -help groups, counsel l ing, home remedies, folk pract ices, and we l lness regimens), preva lence rates of A C T use within cancer populat ions may have been artificially inflated (e.g., Montbr iand, 1995a; R isberg , Lund, Wist et al . , 1995; R isberg , Lund, Wist , K a a s a , & Wi l sgaard , 1998). Converse ly , defining A C T s as only those treatments used specif ical ly to cure cancer (e.g., Cass i l e th , Lusk, S t rouse, & Bodenhe imer , 1984) may have signif icantly underest imated the preva lence rate. A further crit icism of A C T use research within cance r populat ions has been the lack of differentiation between A C T s that are used as adjuncts to convent ional cance r care and those that are used for curative purposes and in the p lace of convent ional cancer treatment (Ernst & Cass i l e th , 1998). The latter type of A C T s are most often used by individuals who have removed themse lves from the convent ional heal th-care sys tem, and as such , are rarely represented within preva lence statistics deve loped from cl inical ly-situated samp les . 17 C o n c e r n has been ra ised about the cho ice of study samp les and the potential for se lect ion bias within research explor ing A C T use by individuals with cancer . T h e inclusion and exc lus ion of part icipants based on speci f ic cancer d iagnoses , s tage of d i sease (i.e., palliative), and treatment exper ience (i.e., convent ional vs. al ternat ive/complementary) provides only a limited v iew of A C T use by individuals with cancer and restricts the general izabi l i ty of the f indings. Further, the rel iance on conven ience samp les within this a rea of research has made it difficult to reach conc lus ions about the prevalence of A C T use in cancer populat ions. Recent ly , Ernst and Cass i le th (1998) attempted to provide a summary of exist ing preva lence data on A C T use within cancer populat ions. Tab le 2 represents a modif ied vers ion of the publ ished table that exc ludes non-Engl ish art icles and pediatric research . Seve ra l recent studies not inc luded in Ernst and Cass i le th ' s (1998) review have been added . Ve ry few of the prevalence studies conducted in the 1990s util ized random sampl ing techniques, the excep t ions 3 being C o s s et al . 's (1998) survey of cance r patients in Cal i forn ia and Lerner and Kennedy 's (1992) national te lephone survey of cancer patients in the Uni ted States. S imi lar preva lence rates were reported in both studies (6% and 9%, respect ively), however, c loser examinat ion reveals severa l methodological l imitations. Foremost , C o s s et a l . (1998) examined only the use of al ternat ive/complementary practit ioners, and as such , may have gross ly under-est imated the use of A C T s implemented independent ly by individuals living with cancer . Second ly , the inclusion of proxy respondents, both fr iends and family members , in Lerner and Kennedy ' s (1992) survey ra ises quest ions regarding the accuracy of the f indings, more so cons ider ing the potentially covert nature of A C T use (Ba lneaves et al . , 1999; E isenberg et a l . , 1998). Further, the terminology used by Lerner and Kennedy (1992) to descr ibe A C T s (i.e., "quest ionable treatment methods") may have introduced a pejorative bias to the survey, result ing in the under-report ing of A C T use. More recent preva lence studies on A C T use in cance r populat ions have addressed s o m e of the sampl ing concerns that have p lagued studies in this a rea by employ ing random sampl ing techniques (Boon et al . , 2000; R e e s et al . , 2000). Within C a n a d a , the prevalence rate of A C T use within cancer populat ions has been reported to range from 7% to 8 1 % (Boon et al . , 2000; E idenger & Schap i ra , 1984; Montbr iand, 1995a; O n e s c h u k et a l . , 1998). E idenger and Schap i ra (1984) conducted interviews with a volunteer samp le of 315 cancer patients about whether unconvent ional t reatments such as Laetr i le, v i tamins, or spec ia l diets could cure cancer . Only 7 % of part icipants reported us ing "medicat ions to treat their cancer other than those prescr ibed by their phys ic ians" (p. 2739); however, g iven the quest ion wording (i.e., "cure") used to a s s e s s A C T use , the est imated 3 Crocetti et al. (Crocetti et al., 1998) recruited women with breast cancer through the archives of the Tuscany Cancer Registry. Details regarding the recruitment and sampling procedures, however, are not sufficient to determine if random sampling was utilized. Table 2. Summary Data from Prevalence Studies on A C T Use in Cancer Populations Authors (Year) Sample (Country) Method Most Commonly Used ACTs Prevalence Arkko, Arkko, Kari- Koskinen, & Taskinen (1980) 151 consecutive outpatients with cancer (Finland) Personal interviews Herbs, vitamins, diets 56% of female and 30% of male patients had used A C T s Balneaves et al. (1999) Convenience sample of 54 women with breast cancer (Canada) Personal interviews with questionnaire Relaxation, meditation, vitamins/tonics, spiritual therapies 67% had used at least one A C T since diagnosis Begbie, Kerestes, & Bell (1996) 507 outpatients with cancer (Australia) Questionnaire Diets, psychological methods 22% had used some form of A C T Boon et al. (2000) Random sample of 422 women with breast cancer (Canada) Mailed questionnaire Vitamins/mineral, herbal products, green tea, special diet or foods 66.7% had used at least one A C T once in their life. Burke & Sikora (1993) 100 new consecutive patients with various cancers (UK) Personal interviews Counseling, meditation, relaxation, visualization 32% had used some form of A C T Cassileth et al. (1984) 304 inpatients with a variety of cancer diagnoses and 356 cancer patients of A C T practitioners (US) Personal interviews Metabolic treatments, diets, megavitamins, imagery, spiritual healing, immune stimulants 54% of patients receiving conventional medical treatment used A C T s Clinical Oncology Group (Anonymous, 1987) 463 outpatients with cancer (New Zealand) Personal Interviews Diets, vitamins, herbal products, laetrile 37% had sought advice about A C T s Coss e ta l . (1998) 503 randomly selected patients with a variety of cancer diagnoses (US) Telephone interviews Nutritionists, counselors, herbalists, massage therapists 6% had seen an alternative/ complementary practitioner Crocetti et al. (1998) 473 women with breast cancer identified through a cancer registry (Italy) Mailed questionnaire Homeopathy, manual healing, herbalism, and acupuncture 16.5% began using A C T s after diagnosis. 8.7% had used A C T s previously Downer et al. (1994) 600 patients with a variety of cancer diagnoses (UK) Mailed questionnaire and face-to-face interviews Relaxation, visualization, diets, homeopathy, vitamins, herbalism 16% had used or were using A C T s 19 T A B L E 2. Summary Data from Prevalence Studies on A C T Use in Cancer Populations (cont.) Authors (Year) Sample (Country) Method Most Commonly Used ACTs Prevalence Eidenger & Schapira (1984) 315 consecutive patients with a variety of cancer diagnoses (Canada) Personal interviews Interview questions • focussed on Laetrile, vitamins, diets 7% had tried some type of A C T Feigen & Tiver (1986) 202 consecutive patients with a variety of cancer diagnoses (Australia) Questionnaire Vitamins, herbalism, protein supplements, naturopathy, faith healing, meditation 13% had used diet supplements; 13% had consulted A C T practitioners Goldstein et al. (1991) Convenience sample of 40 radiation cancer patients with a variety of diagnoses (US) Personal interviews Diets, metabolic therapy, mental imagery 12% were using A C T s while receiving treatment Lerner & Kennedy(1992) 5047 cancer patients (2855 of which were proxy interviews) (US) Telephone interviews Imagery, hypnosis, psychic therapy, diets, alternative drugs 9% had used at least one A C T in their lifetime Liu e ta l . (1997) 100 consecutive Chinese patients with advanced cancer (Taiwan) Questionnaire Chinese medicine 81% were using A C T s along with conventional medical treatment Montbriand (1995b) Convenience sample of 48 patients and 252 randomly selected patients with respiratory/digestive system cancers (Canada) Personal interviews Vitamins, minerals, herbal products 64% used A C T s Oneschuk et al. (1998) 143 consecutive patients with a variety of cancer diagnoses (Canada) Personal interviews Herbalism, vitamins, minerals 37% using A C T s Rees et al. (2000) Random sample of 714 women with breast cancer (UK) Mailed questionnaire Massage, aroma- therapy.chiroprac- tics, osteopathy, relaxation/medita- tion, spiritual healing 31.5% had used at least one A C T since diagnosis 20 T A B L E 2. Summary Data from Prevalence Studies on A C T Use in Cancer Populations (cont.) Authors Sample (Country) Method Most Commonly Prevalence (Year) Used ACTs Risberg, Lund, 252 patients with a Questionnaire Laying on of hands, 19.6% had used & Wist (1995) variety of cancer homeopathy, A C T s for their diagnoses herbalism, vitamins, cancer (Norway) diets Risberg, Lund, 642 patients with a Questionnaire Laying on of hands, 20% had used one Wist, et al. variety of cancer homeopathy, zone or more A C T s (1995) diagnoses therapy, herbalism, (Norway) diets, Nitter therapy, Iscador Risberg et al. 252 patients with a Questionnaire Faith healing, laying Prevalence (1998) variety of cancer with follow-ups at on of hands, increased over diagnoses. 60 4, 12, 24, 60 homeopathy, zone follow-up: 26% at month follow-up months and therapy, bergs, 4 months, 24% at with 110 patients. telephone vitamins, diets, 12 months, 18% at (Norway) interviews Iscadore, Nitter 24 months, and therapy 27% at 60 months. Salmenpera 229 women with Mailed Vitamins/minerals, 30% and 28% of (2002) breast cancer and questionnaire diets, natural health women and men, 209 men with products, spiritual respectively, had prostate cancer healing used A C T s (Finland) following diagnosis. Swisher et al. 113 women with Questionnaire Faith healing, 49.6% reported (2002) gynecologic therapeutic touch, using A C T S since cancers seen in imagery, meditation/ diagnosis; 46% of an outpatient clinic relaxation, herbal users ingested (US) products, vitamins/ some type of ACT; minerals 79% of users used a psychological or spiritual therapy Yates et al. Convenience Questionnaire Vitamins/tonics, 40% had used at (1993) sample of 152 meditation, relax- least one A C T or patients with a ation, special foods, consulted at least variety of meta- faith healing one A C T practi- static cancer tioner for their diagnoses cancer (Australia) Note. Modified from Ernst, E. & Cassiletth, B.R. (1998). The prevalence of complementary/alternative medicine in cancer: A systematic review. Cancer, 83:777-782. prevalence rate may have been biased downward. Sampling has also been problematic in Canadian prevalence studies, with convenience sampling (Oneschuk et al., 1998) or mixed convenience and random sampling approaches (Montbriand, 1995a) being used to recruit 21 part icipants. A n except ion has been B o o n et a l . 's (2000) survey of breast cance r surv ivors in Ontar io, which is descr ibed in greater detail in the fol lowing sect ion on preva lence of A C T use in breast cancer populat ions. R i sbe rg et al. 's (1998) study of A C T use in Norway is worthy of ment ion b e c a u s e of the longitudinal nature of the research. Two hundred and fifty-two individuals, with a variety of cancer d iagnoses , were fol lowed over a 5-year period to a s s e s s how A C T use changes over the cancer trajectory. Repor ted prevalence at each data col lect ion t ime var ied between 17 .4% and 27 .3%. T h e est imated cumulat ive risk of being a consumer of A C T s over a 5-year period was 4 5 % . Th is research il lustrates the potential limitations of c ross-sect iona l s tudies of A C T use and sugges ts that preva lence rates of A C T use may fluctuate depending on the d i sease status of the populat ion and the stage of the cancer trajectory. Further, R isberg et al. (1998) demonst ra ted that the majority of users (61%) started using A C T s three to four months fol lowing their cancer d iagnos is . Th is finding emphas i zes the importance of al lowing severa l months to e lapse after d iagnos is prior to est imating prevalence rates within cancer populat ions. Longitudinal research is of particular interest in relation to A C T use b e c a u s e it provides information about the long-term implicat ions of cancer patients' alternative or complementary treatment dec is ions on their health and the convent ional and alternative heal th-care sys tems. Ear l ier work by Cass i le th et al. (1984) has provided addit ional ev idence of the impact of the cance r trajectory on A C T use. Of the 660 cancer patients interviewed from ac ross the U S , 6 4 % sought convent ional medical treatment first, 18% received convent ional treatment and A C T s s imul taneously , and 1 8 % began using A C T s before a c c e s s i n g convent ional med ica l care . Moreover , 7 7 % reported using A C T s prior to beginning chemotherapy or radiotherapy. With 2 4 % of the samp le using metabol ic therapies and 2 0 % undertaking major dietary changes , the potential for interactions between convent ional treatment and A C T s is of signif icant concern . A l s o of interest in this study w a s the fact that 4 3 % of participants did not begin using A C T s until distant sp read of their d i sease occurred, suggest ing that individuals with advanced cancer may be a unique populat ion with regard to attitudes and treatment behaviour. T h e s e f indings, however, must be cons idered with caut ion because of the use of grouped data, in which patients from both convent ional (N = 304) and al ternat ive/complementary heal th-care sys tems (N = 356) were included in the study. Sl ight geographica l di f ferences in A C T use among cancer patients are apparent from previous preva lence research . In North A m e r i c a , metabol ic therapies, spec ia l diets, and vi tamins are the most commonly reported A C T s (Boon et al . , 2000; Cass i l e th et a l . , 1984; C o s s et al . , 1998; Go lds te in et al . , 1991; L e r n e r & Kennedy , 1992). O n e except ion is Montbr iand 's (1995a) study, in wh ich the majority of cance r patients (71%) reported us ing phys ica l alternative pract ices. A preference for physical A C T s w a s a lso reported in two Aust ra l ian studies (Fe igen & 22 Tiver, 1986; Y a t e s et a l . , 1993). In contrast, research from Norway (R isberg , Lund, & Wist , 1995; R isberg , Lund, Wis t et al . , 1995; R isberg , Lund et al . , 1998), the United K ingdom (Downer et a l . , 1994; R e e s et a l . , 2000), and Italy (Crocett i et a l . , 1998) revealed a preference for spiritual heal ing, mind-body therapies (i.e., visual izat ion), and traditional sys tems of heal ing (i.e., homeopathy, herbal ism). For example , in Downer et al. 's (1994) explorat ion of A C T use by cance r patients receiving convent ional treatment (N = 415), 6 5 % of those individuals using A C T s pract iced heal ing therapies and 2 5 % used homeopathy remedies. Geograph ica l d i f ferences in A C T use may reflect phi losophical and heal th-care funding dispar i t ies between North Amer i can and European health-care sys tems. Whi le the al lopathic tradition has ga ined dominance within North Amer i ca , many European countr ies have retained a pluralistic v iew of medic ine (Lerner, 1994). Individuals from these countr ies may have better a c c e s s to therapies from many tradit ions and may exper ience greater accep tance of their use of therapies that add ress more than phys ica l needs . S u c h di f ferences, however, may a lso reflect the lack of an internationally agreed upon definition of A C T s and should be interpreted with caut ion. Alternative/Complementary Therapy Use by Women Living with Breast Cancer Whi le there is s o m e ev idence that the type of cancer has limited inf luence on the preva lence of A C T use (Lerner & Kennedy , 1992; Oneschuk et al . , 1998; R isberg , Lund et al . , 1998), the use of A C T s by w o m e n with breast cancer has been the subject of six recent studies (Ba lneaves et al . , 1999; Boon et al . , 2000; Crocett i et al . , 1998; G ray et al . , 1997; R e e s et al . , 2000; V a n d e C r e e k et al . , 1999). In Crocett i et al. 's (1998) study of 473 w o m e n with breast cancer se lec ted from a popula t ion-based Italian cancer registry, just over 16% of the part icipants reported using A C T s fol lowing d iagnos is . T h e A C T s most commonly used were homeopathy (24%), manipulat ive therapies (i.e., massage ) (16%), herbal ism (14%), and acupuncture (7%). T h e majority of w o m e n reported using A C T s either independent ly of convent ional treatment (30%) or fol lowing convent ional treatment (30%), with 1 7 % reporting s imul taneous use of A C T s with convent ional treatment. T h e w o m e n who used A C T s were found to be significantly younger , better educa ted , and had a previous history of A C T use , with the latter character ist ic being the only independent signif icant predictor of A C T use. T h e s e f indings must be interpreted with caut ion, however, b e c a u s e the respondents were significantly younger than non-respondents . Turning to the United K ingdom, R e e s et a l . (2000) undertook a popula t ion-based survey of 714 w o m e n who had been d iagnosed with breast cancer between 1990 and 1996. Us ing a mai led quest ionnai re that had been pre-tested with outpatients at an alternative cance r therapy clinic, respondents were asked if they had ever visited or received therapy from one or more of a list of alternative practit ioners. The w o m e n were also asked about their use of A C T s in the past 12 months and s ince their breast cancer d iagnosis . Near ly 3 2 % of the respondents had 23 consul ted an alternative practit ioner s ince d iagnos is , with just over one half of these w o m e n reporting using more than one type of therapy. Over- the-counter A C T s (e.g., v i tamins/minerals, herbal products) had been used by 33 .2% of the women , with 14 .8% using these A C T s s ince their breast cancer d iagnos is . T h e most commonly used therapies in the previous year were massage/a romatherapy , chiropract ics/osteopathy, relaxat ion/yoga/meditat ion, and spiritual heal ing. Turning to North Amer i ca , Ba lneaves et al. (1999) explored the health beliefs and treatment pract ices of a conven ience samp le of 54 w o m e n living with breast cance r in Mani toba, C a n a d a . In marked contrast to the f indings of Crocett i et a l . (1998) and R e e s et a l . (2000), over 6 7 % of the part icipants reported using at least one A C T s ince being d iagnosed with breast cancer . Th is d isc repancy was attributed to severa l factors, including di f ferences in A C T definit ions, instrument des ign , and sample select ion methods. The use of face- to- face interviews may have a lso facil i tated rapport between the participants and the researcher and, as a consequence , inc reased women 's wi l l ingness to report A C T use. T h e most frequently reported A C T s were meditat ion/relaxation therapies (60%), vi tamins/tonics (57%), and spiritual/faith heal ing (53%). Th is research provides preliminary insight into the use of A C T s by C a n a d i a n w o m e n with breast cancer . In another C a n a d i a n study, Boon et a l . (2000) used the Ontar io C a n c e r Registry to obtain a random samp le of 422 w o m e n who were d iagnosed with breast cance r in either 1994 or 1995. Near ly 4 0 % of the respondents reported visiting an A C T practit ioner and an addit ional 6 2 % reported using at least one A C T at somet ime. Overa l l , 6 6 . 7 % of w o m e n with breast cance r reported using s o m e type of A C T at least once in their life. 4 Interestingly, statist ics speci f ic to the use of A C T s fol lowing breast cancer d iagnos is were not provided. Only 16 .4% of A C T users in this samp le reported that they were currently adher ing "completely" to an A C T treatment reg imen. V i tamins and minerals were the most common ly u s e d therapy, with 13 .4% of respondents reporting these supp lements as being the only A C T they had ever used . Other c o m m o n therapies included herbal products (including green tea, Ess iac ) , spec ia l diets or foods, bodywork, and meditat ion. Addi t ional support for the high prevalence rates reported by Ba lneaves et a l . (1999) and B o o n et a l . (2000) w a s provided by V a n d e C r e e k , Rogers , and Lester (1999), who examined A C T use within 112 breast cancer outpatients randomly se lec ted from a breast cancer cl inic in the Midwestern Uni ted States. Us ing a pre-determined list of A C T s deve loped by E isenberg et al . (1993), 9 1 % of the samp le reported using at least one of 18 therap ies . 5 T h e most frequently 4 Boon et al. (Boon et al., 2000) noted that the therapies reported by the women were "not necessarily in an attempt to treat their cancer" (p. 2517). 5 The researchers noted that in contrast to previous prevalence studies (e.g., Eisenberg et al., 1993), prayer and exercise were included as A C T s in the analysis. 24 reported therap ies inc luded prayer (84.5%), exerc ise (75.8%), and other spiritual therapies (48.3%). Wh i le researchers have quest ioned the inclusion of prayer within the alternative health- care paradigm (E isenberg et al . , 1998; E isenberg et al . , 1993), the authors of this study sugges ted that the morbidity and mortality assoc ia ted with breast cancer may increase the importance of spirituality in women 's response to their d i sease . S imi lar f indings related to the use of spiritual therapies have been reported in other cancer populat ions (R isberg , Lund et al . , 1998). Overa l l , w o m e n spent approximately $42 per visit, with the m e a n number of visits reported to be 5 .3 . 6 Simi lar to the research conducted in genera l populat ions, explorat ion of A C T use in cance r populat ions has been hindered by inconsistent conceptual izat ion of A C T use , conven ience samp les , and select ion b iases . Accord ing ly , wide ranges of preva lence rates and therapies have been reported. S o m e ev idence suggests the A C T use within cance r populat ions f luctuates ac ross the cancer trajectory and is inf luenced by geograph ica l locat ion. Whi le preva lence studies of A C T use in breast cancer populat ions have, in genera l , been better des igned with regards to sampl ing and measurement issues, a variety of preva lence rates have been reported. In addit ion, the lack of distinction between w o m e n at different s tages of the cance r trajectory (i.e., newly d iagnosed , undergoing convent ional cancer treatment, survivorship, and palliative) may have inf luenced the est imation of the preva lence of A C T use and the types of therapies reported. Characteristics of Consumers of Alternative/Complementary Therapies A s the use of A C T s has become more prevalent within general and cance r populat ions, researchers have been interested in identifying those individuals most likely to use these types of therapies. In the fol lowing sect ions, the broad range of literature that descr ibes the personal and soc ia l character ist ics of A C T consumers within genera l and cancer populat ions, including the demograph ic profile of A C T users, and the inf luence of previous health exper iences on A C T use, is d i s c u s s e d . Demograph ic Profi le within Genera l Populat ions Pas t empir ical research has provided a consistent profile of A C T consumers . Soc iodemograph i c factors found to be assoc ia ted with complementary therapy use include age, gender, level of educat ion, income, and health status (E isenberg et al. , 1998; E isenberg et al . , 1993; Murray & Shephe rd , 1993; T h o m a s et al . , 1991). The typical consumer of A C T s within the genera l populat ion has been identified as female, under the age of 65 years , and with a high soc ioeconomic status. A similar profile has been found within the C a n a d i a n genera l populat ion 6 The time period in which A C T use was assessed was not reported. 25 (Angus R e i d Group , 1997; Berger, 1993; Bla is et a l . , 1997; Ke lner & W e l l m a n , 1997a ; Millar, 1997; R a m s a y et al . , 1999). There has been ev idence support ing an assoc ia t ion between ethnicity and the preva lence of A C T use (E isenberg et al. , 1998; E isenberg et al . , 1993; Grenfel l et al . , 1998). E isenberg et al. (1993, 1998) reported that A C T use in the Uni ted Sta tes w a s least prevalent within the Af r ican-Amer ican populat ion. In contrast, Grenfel l et al. (1998) found A C T use in the Uni ted K ingdom to be more prevalent within B lack [sic] (78%) and A s i a n (77%) populat ions than in C a u c a s i a n populat ions (53%). Limited investigation into the impact of immigrat ion history on A C T use has been conducted (Hilton et al. , 2001 ; M a , 1999). Further ep idemio log ica l research is needed to clarify the nature of the relat ionship between ethnicity, immigrat ion, acculturat ion, and A C T use, particularly within multicultural soc iet ies where popular, folk, and professional sectors of health care may over lap (K le inman, 1988). Whi le a demograph ic profile of A C T consumers has been revealed, recent ev idence shows that the relat ionships between demograph ic character ist ics and A C T use may be d iss ipat ing. In a secondary data analys is of C a n a d a ' s Nat ional Heal th Populat ion Survey 1994- 1995 (Statist ics C a n a d a , 1995), Ba lneaves and Ratner (under review) found no signif icant relat ionships between gender, educat ion, income, and A C T use. Both men and w o m e n from a variety of educat ional and soc ioeconomic backgrounds reported consul t ing alternative/ complementary practit ioners. The lack of a distinct demograph ic profile w a s attributed to the growing sa l ience , availabil ity, and accep tance of A C T s within the C a n a d i a n heal th-care sys tem (Ba lneaves & Ratner, under review). The recent F raser Institute survey of A C T use ( R a m s a y et a l . , 1999) a lso found no signif icant relat ionship between reported annua l income and A C T use in C a n a d a . Th is research suggests that as se lected A C T s gain legit imacy through scienti f ic research , educat ion, or w idespread use and if they become access ib le through insurance funding, A C T use may b e c o m e prevalent ac ross all segments of society. Demograph ic Profi le within C a n c e r Populat ions Contradictory ev idence of a distinct profile of A C T users a lso exists within cancer populat ions. In the majority of research studies, the typical consumer of A C T s is female , under the age of 65 years, and from a high soc ioeconomic c lass (Cassi le th et al . , 1984; C o s s et al . , 1998; Downer et al . , 1994; Lerner & Kennedy , 1992; O n e s c h u k et al . , 1998; R isberg , Lund et a l . , 1998; Sw ishe r et al . , 2002; Ya tes et al . , 1993). A s wel l , there has been s o m e ev idence to suggest that individuals with advanced cancer are more likely to use A C T s than patients with less advanced cance r (Lerner & Kennedy , 1992; R isberg , Lund, Wist et al . , 1995). Prel iminary research has a lso revealed significant assoc ia t ions among ethnicity and the preva lence of A C T s (Maskar inec , S h u m a y , Kaka i , & Gotay, 2000) and the types of therapies used (Alferi, Anton i , Ironson, Ki lbourn, & Carver , 2001 ; Lee , L in, W r e n s c h , Adler , & E isenberg , 2000). Contradictory f indings exist, however, that chal lenge the inf luence of demograph ic character is t ics on cancer 26 patients' use of A C T s . In a multi-centre study of Norwegian cancer outpatients, R isbe rg , Lund, et a l . (R isberg , Lund , Wis t et a l . , 1995) found no signif icant d i f ferences between users and non- users of A C T s with regards to gender or educat ion. Cass i le th et a l . (1984) a lso reported no signif icant assoc ia t ions between gender, educat ion, marital status, ethnicity, or s tage of d i sease at d iagnos is and A C T use by patients attending a convent ional cancer facility. T h e s e d isc repanc ies underscore the need for further study of the relat ionships be tween A C T use and demograph ic character ist ics within cancer populat ions. Oppos ing v iews a lso exist regarding the underlying p rocesses that explain the relat ionships between demograph ic character ist ics and the use of A C T s by individuals living with cancer . F o r example , Lerner and Kennedy (1992) sugges ted that A C T use w a s more prevalent within higher income groups because of the out-of-pocket costs assoc ia ted with A C T use in the Uni ted States. In contrast, Ya tes et al. (1993) attributed the effect of soc ioeconomic status on A C T use by Austra l ian cancer patients to di f ferences in health bel iefs. Individuals si tuated in h igher soc ioeconomic groups were found to hold more posit ive bel iefs about alternative c a u s e s of cancer and the eff icacy of A C T s than individuals reporting lower educat ion and income levels. In addit ion, Ya tes et al. (1993) found younger cancer patients, who used A C T s more frequently than older individuals, to be more skept ical about convent ional medica l care. Thus , whi le the development of a profile of A C T consumers has been helpful in identifying potential users of A C T s in cancer populat ions, the demograph ic character ist ics of A C T users may be more indicative of variat ions in health beliefs rather than treatment preferences. Further study is needed to clarify the assoc ia t ions between demograph ic character ist ics, A C T use, and health bel iefs. Within the breast cancer populat ion, preliminary work has revealed assoc ia t ions between A C T use and se lec ted demograph ic character ist ics. In their study of 242 Italian w o m e n with breast cancer , Crocett i et a l . (1998) found that women using A C T s were signif icantly younger , better educa ted , and had used A C T s prior to their breast cance r d iagnos is . Th is study is unique compared to other epidemiologica l research on A C T use b e c a u s e it recogn izes the inter-relationship among demograph ic character ist ics; the proportion of highly educa ted w o m e n w a s reported to be significantly greater among younger women , along with previous use of A C T s (Crocett i et a l . , 1998). Ba lneaves et a l . (1999) a lso reported a signif icant relat ionship between educat ion level and the use of A C T s by C a n a d i a n w o m e n with breast cancer . T h e lack of addit ional signif icant assoc ia t ions between demograph ic factors and A C T use in this study reflects the limited power of this study resulting from the restricted samp le s ize (N = 54). More recent s tudies of A C T use in breast cancer survivors have further suppor ted the role of age, educat ion, income, and cancer treatment history (Boon et al . , 2000; R e e s et a l . , 2000; S a l m e n p e r a , 2002). No theories regarding the cognit ive or soc ia l p rocesses through which 27 demograph ic character ist ics inf luence treatment dec is ions speci f ic to A C T use , however, have been put forth speci f ic to w o m e n with breast cancer . In summary , past epidemiological research within general and cance r populat ions has provided contradictory ev idence regarding the demograph ic profile of A C T consumers . Addi t ional research with larger populat ions is needed to clarify the relat ionship between gender, age , soc ioeconomic status, chronic i l lness and the dec is ion to use A C T s , with a spec ia l emphas i s on the interrelationships among demograph ic character ist ics and health beliefs in relation to the use of A C T s by w o m e n living with breast cancer . Prev ious Heal th Exper iences B e y o n d demograph ic character ist ics, ev idence exists of a relat ionship be tween chron ic d i sease occur rence and the use of A C T s (Ba lneaves & Ratner, under review; Ke lner & We l lman , 1997a; Millar, 1997; Murray & Shepherd , 1993; R a m s a y et al . , 1999). In a recent C a n a d i a n survey of A C T use (Ramsay et al . , 1999), between 6 0 % and 7 1 % of individuals reporting a variety of chronic condit ions (e.g., back problems, arthritis, lung problems) had used at least one A C T in the past year. Mil lar (1997) a lso observed a progress ive trend in A C T use in relation to chronic i l lnesses, with 2 6 % of individuals having three or more chronic condit ions reporting A C T use in the previous 12 months. Th is trend is of s igni f icance g iven the increasing preva lence of chronic condit ions in an aging C a n a d i a n populat ion. In addit ion to chronic i l lness being a potential predictor of A C T use, s o m e support is found for an assoc ia t ion between previous A C T use and the dec is ion by individuals faced with cancer to use A C T s . For example , in R isberg , Lund, et al. 's (1995) explorat ion of A C T use among Norweg ian cancer patients, individuals who had used A C T s prior to d iagnos is were signif icantly more likely to use A C T s as part of their cancer care. Montbr iand (1995b) a lso found previous use of A C T s to be predictive of A C T use by individuals with cancer , with 8 7 % of patients with a high interest in A C T s reporting us ing A C T s prior to d iagnos is . A n assoc ia t ion between A C T use and previous A C T use in w o m e n with breast cancer has been reported by Crocett i et al. (1998) and R e e s et al. (2000). Addi t ional research, however, is needed to understand the predictive value of i l lness history and previous A C T use with regard to the use of A C T s by c a n c e r patients and the inf luence of health exper iences on the treatment dec is ion - making p rocess . Health Beliefs and Alternative/Complementary Therapy Use O n e a rea of A C T research that has received much attention in recent years has been the role of cognit ion in the dec is ion to use A C T s . O f particular interest has been the relat ionship between bel iefs about health and i l lness and the use of therapies beyond the s c o p e of convent ional medic ine. In the fol lowing sect ion, the potential assoc ia t ions between health 28 beliefs and A C T use within both general and cancer populat ions is d i s cussed , with spec ia l emphas i s being p laced on beliefs reflecting perceived need for care (i.e., perce ived risk). Heal th Bel iefs within Genera l Populat ion R e s e a r c h e r s have exp ressed interest in uncover ing not only the demograph ic character is t ics of A C T consumers , but a lso the attitudes and beliefs of individuals within the genera l populat ion who use A C T s . In particular, extensive research has been conduc ted on the effect of lay percept ions of health and i l lness on the dec is ion to use A C T s . The most prominent program of research has been led by Furnham et al. (Furnham, 1994; Furnham & Beard , 1995; Fu rnham & Bhagra th , 1993; Furnham & Forey, 1994; Furnham & Kirkcaldy, 1996; Fu rnham & Smi th , 1988; Fu rnham, Vincent , & W o o d , 1995; V incent & Furnham, 1996, 1997), who have explored the relat ionships among lay health beliefs and the use of A C T s in the Uni ted K ingdom. Beg inn ing in 1988, Furnham and Smith (1988) examined the health beliefs of a conven ience samp le of 87 individuals who were attending either a genera l practit ioner or a homeopath ic provider. Homeopath ic patients were found to hold more negat ive bel iefs about the eff icacy of convent ional medic ine and more positive beliefs in the body 's ability to heal . In contrast, patients receiving convent ional medic ine held more posit ive beliefs about the effects of convent ional med ic ine therapies and , correspondingly, had more conf idence in the care provided by genera l practit ioners. No di f ferences were found between the two patient groups with regard to perce ived i l lness susceptibi l i ty. A l though this research w a s limited in s c o p e and could not be genera l ized to the larger populat ion of A C T users, it provided prel iminary support for health beliefs being antecedent var iables assoc ia ted with the dec is ion to use A C T s . A fol low-up study of homeopath ic and convent ional medica l patients (N = 160) by Furnham and Bhagrath (1993) examined a broader range of health beliefs and behaviour. Control l ing for the effects of age and income, homeopath ic patients were found to be highly skept ica l of convent ional med ica l care and to hold strong beliefs about the tenets of homeopathy. T h e s e individuals were a lso found to be more aware of health i ssues than were convent ional medica l patients and more likely to bel ieve in the role of lifestyle in preventing i l lness (i.e., s t ress reduct ion, relaxation and meditation techniques). T h e s e f indings led to the hypothesis that individuals who use homeopathy have an intrinsically greater interest in health care than individuals attending general practit ioners. Th is interpretation, however , must be cons idered with caut ion because participants' past medical history and current health status and the extent to which part icipants had used practit ioners from different health parad igms were not taken into account . Fu rnham and Forey 's (1994) research attempted to address , in part, these limitations by compar ing the health beliefs of patients attending general practit ioners and patients drawn from a variety of A C T providers (N = 160). A C T consumers were again found to be more cynical 29 about convent ional medic ine, perceived greater eff icacy of A C T s , and had a higher health c o n s c i o u s n e s s than individuals samp led from the off ices of genera l practi t ioners. A C T and genera l practit ioner patients, however, reported using treatments from both the convent ional and alternative heal th-care sys tems. In both study groups, ser ious i l lnesses were brought first to the attention of convent ional medica l providers. This research is signif icant b e c a u s e it sugges ts that A C T users select therapies based on the nature of their i l lness and v iew A C T s as being on a cont inuum of care, which inc ludes convent ional medica l care. Extending previous work, Furnham, Vincent , and W o o d (1995) examined the unique beliefs held by convent ional medic ine patients (N = 58) and three groups of A C T consumers , including osteopath ic (N = 65), homeopath ic (N = 76), and acupuncture (N = 57) patients. Th is research provided further support for the p resence of a cont inuum in treatment cho ice and, correspondingly , in health beliefs. A C T consumers and convent ional medic ine patients were found to vary in their beliefs about the quality of the doctor-patient relat ionship, the eff icacy of convent ional medic ine and A C T s , and the importance of a healthful lifestyle. T h o s e patients us ing acupuncture were found to be the least sat isf ied with their re lat ionships with convent ional care providers, to be the most skept ical of the eff icacy of convent ional medic ine, and to p lace the greatest emphas i s on lifestyle as a change agent in health than other A C T users . A l s o of interest w a s the assoc ia t ion between chronic i l lness and A C T use, with acupuncture patients being most likely to have a chronic i l lness in compar ison to other patients. Unfortunately, this research w a s limited by significant c rossover between study groups in terms of treatment history. In a fol low-up study, Furnham and Beard (1995) grouped study part icipants (N = 187) by therapy use rather than cl inic at tendance. Not only did this study explore the health beliefs of convent ional , complementary , and alternative therapy patients, but a lso their genera l bel iefs, s u c h as cop ing s ty les 7 and "Just Wor ld " bel iefs" . 8 A l though the sampl ing des ign (both conven ience and random) and the restricted range of A C T s explored (acupuncture and Shiatsu) limited the general izabi l i ty of the f indings, this research is important b e c a u s e it revealed that heal th-speci f ic beliefs discr iminated more clearly between treatment cho ice than genera l beliefs. Furnham and Beard (1995) sugges ted that the lack of signif icant assoc ia t ions between coping styles, "Just Wor ld " beliefs and A C T use illustrated the i r relevance of personal i ty factors in the 7 Coping styles were measured using Miller's (1987) Behavioral Style Scale in which individuals are classified as being either monitors (actively seek information about a potential threat) or blunters (avoid relevant threat information). 8 "Just World" Beliefs were first introduced by Lerner (1965) and are based on the tendency of people to blame others for their own misfortunes. A 6-item scale, the "Just World" Beliefs measure assesses the extent to which individuals perceive the world to be orderly, stable, and just. In the context of Furnham and Beard's (1995) research, individuals who use A C T s are hypothesized to perceived the world as being less stable and just. 30 dec is ion to use A C T s . However , they acknowledged that further research w a s needed to explore the relat ionship between trait character ist ics and A C T use as well as the assoc ia t ion between health beliefs and A C T use. It remains to be demonstrated if health bel iefs not only lead to A C T use but are a lso a c o n s e q u e n c e of attending an A C T provider or independent ly using A C T s . V incent and Furnham (1996) examined the motivation of A C T consumers to use therapies that were not offered by convent ional medic ine. Two hundred and sixty-eight patients from three A C T pract ices (acupuncture, osteopathy, and homeopathy) were asked to rank 20 potential reasons for seek ing A C T s . Fol lowing factor analys is , five factors were identified in order of importance: a) a posit ive valuat ion of complementary treatment, b) the ineffect iveness of orthodox treatment for their chronic i l lness, c) concern about the adverse effects of orthodox medic ine, d) concern about communicat ion with physic ians, and e) the availabil ity of complementary medic ine. Vincent and Furnham (1996) conc luded that A C T consumers were being both "pul led" towards A C T s through posit ive beliefs about the eff icacy and nature of A C T s and "pushed " by the failure of convent ional medic ine to address their chronic i l lness and by inadequate doctor-patient relat ionships. Wi th 8 2 % of the samp le initially consul t ing a physic ian about their complaint, these researchers conc luded that a "wholesa le dis i l lusionment" about convent ional medic ine was not apparent on the part of A C T consumers ; rather, the dec is ion to use A C T s w a s a reflection of the inadequacy of convent ional medic ine in treating chronic condi t ions. V incen t and Furnham (1997) have further exp lored beliefs about the ef f icacy of convent ional medic ine held by A C T consumers . Acupuncture patients (N = 82) were asked to complete a quest ionnaire about the perceived eff icacy of se lected A C T s for four categor ies of i l lness (major, minor, chronic, and psychological) and attitudes towards convent ional medic ine and health. Convent iona l medic ine was s e e n by all participants as being more effective in treating major, l i fe-threatening i l lness, such as heart d i sease and cancer . In contrast, A C T s were s e e n as being more effective in the treatment of chronic and minor i l lness. Not surprisingly, posit ive attitudes towards sc ience were assoc ia ted with a stronger belief in the eff icacy of convent ional medic ine, while beliefs in the importance of psycholog ica l factors in health were assoc ia ted with positive attitudes towards A C T s . Despi te this research being limited to individuals undergoing acupuncture treatment, V incent and Furnham (1997) sugges ted that health bel iefs and their assoc ia ted health behaviours were l inked to wider bel iefs about s c i e n c e and i l lness causat ion. More sophist icated research is needed , however, to examine not only the predict ive power of health beliefs in relation to A C T use, but a lso the complex interactions among health bel iefs, previous health exper iences , demograph ic character is t ics, and A C T use ac ross a range of treatment opt ions and within both general and d isease-spec i f i c populat ions. 31 Inf luenced by the movement towards A C T ef fect iveness research that has pitted alternative parad igms against the b iomedica l hegemony present in Wes te rn heal th-care sys tems, Furnham has focussed his research program in recent years on the disparity in health beliefs between the two health-care sys tems. In a v ignet te-based study of the perce ived eff icacy of homeopathy and convent ional medic ine (Furnham & Bond , 2000) , persona l treatment history w a s found to play a signif icant role in how participants perceived the ef fect iveness of the different treatments. T h o s e individuals with exper ience with A C T s perce ived homeopathy to be more effective than convent ional medic ine, with the oppos ing trend found for individuals who at tended a genera l practitioner. In a more recent study, Furnham (2002) examined the asser t ion that A C T use is representat ive, or an outcome, of an individual 's rejection of empir ic ism and posi t iv ism (e.g., Beyers te in , 1997). Us ing beliefs about predicting the future 9 as a proxy for "non- proven" or postmodern belief sys tems, Furnham (2002) hypothes ized that individuals interested and confident in the eff icacy of A C T s would be more likely to bel ieve in what he termed "future- ologies" . R e g r e s s i o n analys is revealed that attitudes towards and knowledge of A C T s were related to attitudes and knowledge about future-ologies, more so than attitudes towards sc ience and convent ional medic ine. In other words, the higher the eff icacy of A C T s w a s rated, the higher the ef f icacy of future-ologies w a s a lso rated. However , a factor ana lys is revea led that part icipants made c lear dist inctions between A C T s and future-ologies and were highly skept ical of the latter. Furnham (2002) conc luded that individuals interested in A C T s might be more open and sympathet ic to alternative belief sys tems than would be convent ional med ic ine consumers . It could be argued, however, that the distinction between alternative and convent ional health- care sys tems is becoming more blurred with the increasing use of A C T s . For example , in the F rase r Institute survey ( R a m s a y et al . , 1999), the majority of individuals who used A C T s (72%) bel ieved that alternative and convent ional heal thcare should be used concurrent ly rather than individually. Further research is thus needed to examine the predictive capaci ty of health and genera l bel iefs in determining treatment cho ices . T h e program of research deve loped by Furnham and co l leagues has provided substant ial ev idence of the relationship between health beliefs and health behaviour within the genera l populat ion. Individuals who used A C T s were found to be both pul led and pushed towards these therapies as a consequence of their positive valuat ion of A C T s and their d issat isfact ion with convent ional medic ine. Be ing health consc ious and placing greater emphas i s on lifestyle and its inf luence on health was also found to be assoc ia ted with the use of A C T s . A C T consumers , however, were not in a "flight from sc ience , " instead, A C T s were being used as part of a cont inuum of care that included both convent ional and alternative health care. 9 Methods of predicting the future presented to participants included astrology, palmistry, tarot, clairvoyance, graphology, oriental astrology, dowsing, and necromancy. 32 In C a n a d a , researchers a lso have examined the effect of health bel iefs on A C T use within the genera l populat ion. Us ing a comprehens ive health care utilization model (Andersen, 1968; A n d e r s e n , 1995), Ke lner and We l lman (1997a) interviewed 300 individuals attending five different practit ioners: family phys ic ians, chiropractors, acupunctur ists, naturopaths, and Reik i practit ioners. A C T users were found to not only share a unique demograph ic profile (female, younger, highly educated) and to have exper ienced more chronic i l lness, but they a lso had a greater s e n s e of personal responsibil i ty for their health. The assoc ia t ion between health beliefs and A C T use w a s less clear. Whi le s o m e individuals using A C T s exp ressed conf idence in the principles of A C T s , other individuals were motivated by more pragmat ic reasons , including desperat ion. A C T consumers were found to use a mixture of treatments, both alternative and convent ional . Ke lne r and We l lman (1997a) conc luded that whi le s o m e A C T c o n s u m e r s may ascr ibe to an "alternative ideology," others cons ider convent ional medic ine and A C T s to be part of a mul t id imensional heal th-care sys tem. T h e ex is tence of a cont inuum of care, ranging from convent ional to alternative, was further suppor ted by Ke lner and We l lman (1997b), who compared the character ist ics of patients ac ross the five m o d e s of treatment (family physic ian, chiropractic, acupuncture, naturopathy, and Reiki) . T h e heterogeneity of A C T consumers was revealed in this research , with the di f ferences between patients who used convent ional treatment and those who used A C T s becoming more pronounced as therapies b e c a m e more alternative. For example , individuals who used Reik i were found to be more educated and had higher incomes in compar ison to other convent ional and A C T consumers . Convent iona l and A C T consumers were also found to differ in terms of health profile, with individuals further along the cont inuum of care using A C T s for a broader range of health i ssues (i.e., chronic pain, emotional health, health promotion). Ke lner and W e l l m a n (1997b) further sugges ted that the cont inuum not only existed in terms of the profile of consumers , but a lso with regard to public recognit ion and institutional legit imacy of treatments. R e s e a r c h e r s from the United K ingdom also have explored the assoc ia t ion between health beliefs and A C T use within the general populat ion (Murray & Shephe rd , 1993). Despi te its numerous des ign limitations, this research revealed the range in bel iefs, health profi les and A C T use that exists in individuals attending A C T providers. Individuals who u s e d A C T s were found to use a variety of A C T s for both minor ai lments and for recurrent health problems, such as co lds, headaches , and gastrointest inal d isorders. Many A C T consumers exp ressed distrust of convent ional medic ine with regard to unknown long-term dangers and regarded A C T s as being "sa fe" and "non- invasive." However , it was interesting to note that non-users of A C T s reported lower consultat ion rates with general practit ioners than A C T users . Th is f inding provides further support for the proposit ion that the use of A C T s does not prec lude convent ional 33 medic ine util ization but instead represents s o m e of the many treatment opt ions d e e m e d appropriate and acceptab le in today's heal th-care sys tem. Health Bel iefs within C a n c e r Populat ions Turning towards A C T use within cancer populat ions, researchers have explored the motivat ions of A C T use, including the assoc ia t ion between health beliefs and health behaviour. In a study of 660 cancer patients in the United States who were receiving convent ional medica l therapy and A C T s , Cass i le th et a l . (1984) found signif icant di f ferences between study groups with regard to their bel iefs about i l lness and treatment. The majority of part icipants receiving A C T s , with or without convent ional treatment, bel ieved that their cancer could have been prevented, primarily through diet, s t ress management , and environmental changes . T h e s e individuals a lso perce ived convent ional cancer treatment, including chemotherapy and radiotherapy, to be more harmful than helpful and A C T s to be benef ic ial . Convent iona l treatment patients held oppos ing beliefs. Due to the retrospective nature of the study, it is difficult to determine whether the beliefs of A C T consumers were estab l ished prior to their i l lness or treatment, were a consequence of their exposure to alternative and complementary practi t ioners, or were an attempt to reduce cognit ive d i ssonance . However , this research provided prel iminary ev idence of the unique belief sys tems of A C T consumers within cancer populat ions. Downer et a l . (1994) interviewed 48 cance r patients in the Uni ted K ingdom who were using A C T s . W h e n asked to explain their attraction to A C T s , over one half of the samp le reported feel ing more hopeful when using A C T s than when using convent ional medic ine a lone. Forty-two percent were attracted to A C T s because of their belief in the non-toxic and "holistic" nature of the therapies. Twelve patients a lso reported that convent ional medic ine had been unable to offer any further treatment for their d i sease . Th is research points to the potential role of both posit ive bel iefs in the eff icacy of A C T s and hope in the dec is ion to use A C T s . For s o m e individuals living with cancer , A C T s may not only cor respond to their health bel iefs about treatment, but a lso may address a psycholog ica l need for opt imism within their cancer care. Drawing from the health behaviour theor ies of Fab rega (1974) and Becke r (1974), Ya tes et a l . (1993) explored the effect of se lec ted health beliefs on cancer patients' treatment dec is ions related to A C T s . In a study of 152 Aust ra l ians living with advanced cancer , signif icant predictors of A C T use included a belief in "alternative" c a u s e s 1 0 of cancer and being optimistic (operat ional ized as "will to live"). Th is research builds upon Cass i le th et al. 's (1984) work and provides further empir ical ev idence of a relat ionship between beliefs about cancer etiology and treatment cho ice. T h e importance of maintaining hope in the face of a potentially l i fe-threatening 1 0 Alternative causes of cancer included such statements as "My cancer was caused by pollution" and "My cancer was caused by stress". 34 i l lness w a s a lso e m p h a s i z e d as being a key motivator in the dec is ion to use A C T s and points to a potential gap in the care provided to cancer patients through convent ional medic ine. A l though this research w a s limited to individuals with advanced cancer , it provides prel iminary ev idence that A C T use within cance r populat ions may be unique with regard to the underlying motivations and health beliefs held by A C T consumers . R e s e a r c h by R isberg and co l leagues (Risberg, Lund, & Wist , 1995; R isberg , Wis t et al. , 1998) a lso highlights the unique exper ience of cancer patients relative to their use of A C T s . In a comparat ive study of Norwegian patients with non-mal ignant (N = 305) and mal ignant d i sease (N = 252), patients without cancer exp ressed more posit ive beliefs about the potential benefits of A C T s in cance r care than individuals living with cancer (Risberg, Lund, & Wist , 1995). It was postulated that because of the personal implication of such beliefs to patients with mal ignant d i sease , cance r patients might be more c i rcumspect in their attitudes towards A C T s . C o m p a r e d to the previous work of Ya tes et al. (1993), this f inding creates an interesting paradox b e c a u s e it sugges ts that whi le cancer patients may use A C T s to foster hope, they may be unwill ing to p lace too much conf idence in the potential benefits of A C T s . This di f ference, however, may reflect the greater knowledge held by cance r patients with regard to treatment of their d i s e a s e and the potential benefits of A C T s . The d iscrepancy between Ya tes et al. 's (1993) and R isbe rg , Lund, and Wis t ' s (1995) f indings may a lso highlight the di f ferences in beliefs among patients with ear ly-s tage versus late-stage cancer . R isbe rg , Wis t et a l . (1998) found addit ional ev idence of a dif ference between cancer and non-cancer patients with respect to beliefs about the cause of cancer . Non -cance r patients were found to be more dogmat ic in their bel iefs about cancer etiology, express ing posit ive beliefs in the role of the environment and lifestyle in caus ing cancer. In contrast, cancer patients were more amb iguous in their beliefs about cancer etiology. Th is lack of certainty mirrors past research with cance r patients that has revealed similar ambiguity in ascr ib ing mean ing to and causat ion of cance r (Blaxter, 1983; Linn, L inn, & Ste in , 1982; Ya tes et a l . , 1993). The uncertainty held by cancer patients about the c a u s e of their d i sease may limit the explanatory power of bel iefs about causat ion in predicting A C T use. Further research is needed to clarify the nature of the relat ionship between the use of A C T s and et iological bel iefs. With regards to C a n a d i a n research on the health beliefs o f cancer patients using A C T s , few studies have f ocussed on a broad range of cancer d iagnoses . G ray et al . 's (1997) study, however, did examine the beliefs and attitudes of 32 cancer survivors, of whom 3 5 % had been d iagnosed with a mal ignancy other than breast cancer . For many of the respondents , their interest in A C T s w a s motivated by their desi re to make certain that they were not miss ing any treatments that could be important in their recovery. S o m e respondents reported using A C T s to prevent a recurrence and to increase the l ikelihood of a healthy future. Fo r many respondents , 35 however, their use of A C T s following d iagnos is w a s simply an extension of their exist ing health bel iefs and pract ices. Health Bel ie fs within the Breast C a n c e r Populat ion Limited research has been conducted on the health beliefs of A C T consumers within the breast cance r populat ion. Boon et al. 's (1999) qualitative study of the health beliefs of breast cancer surv ivors using A C T s (N = 36) revealed four main themes: survival , react ing to a bad exper ience with convent ional medic ine, prevention of further i l lness, and a belief that there w a s "nothing to lose. " Many of the w o m e n bel ieved that A C T s could enhance their c h a n c e of survival by "boost ing the immune sys tem, " stabil izing their current d i sease , or preventing a poss ib le recurrence. Further, the w o m e n cited negative exper iences with convent ional medic ine, including s ide effects, as motivating them to seek A C T s . It was conc luded that rather than being pul led or pushed towards A C T s , w o m e n with breast cancer were simply "hedging their bets" in an attempt to facilitate their future survival . A fol low-up study by Boon et al. (2000) with 422 women d iagnosed with breast cancer further revea led that A C T consumers were less likely to bel ieve that convent ional cance r treatments would cure their cancer , prevent a spread of d i sease , ass is t other t reatments to work, boost their immune sys tem, or be perfectly safe. Instead, w o m e n using A C T s exp ressed concern that convent ional therapy had s ide effects and would w e a k e n their bod ies ' natural reserves. In contrast, A C T s were perceived to be safer than convent ional t reatments and more likely to ass is t the body 's natural forces to heal . In contrast to Boon et al. 's (1999; 2000) f indings, Ba lneaves et a l . (1999) fai led to find signif icant assoc ia t ions between A C T use and health beliefs in 54 w o m e n living with breast cancer . Irrespective of treatment choice, the majority of w o m e n held posit ive beliefs about the ou tcomes of convent ional care and the support ive nature of A C T s . A l though these beliefs did not appear to inf luence treatment dec is ions , their co-ex is tence highlights the open-m indedness and flexibility with which w o m e n living with breast cancer cons ider multiple treatment opt ions and choose those most relevant to their health care and support needs . However , the study by B a l n e a v e s et a l . (1999) w a s limited by its samp le s ize , mak ing it difficult to genera l ize to the larger breast cancer populat ion and to rule out a Type II error 1 1 . Qual i tat ive researchers have provided addit ional ev idence of the cons is tency of health bel iefs ac ross treatment cho ices within the breast cancer populat ion (Brown & Ca rney , 1996). In semi-structured interviews with 20 w o m e n with breast cancer who had used either convent ional therapies a lone or in conjunct ion with A C T s , w o m e n in both study groups 1 1 Type II error is defined as the failure to find a statistically significant association when one exists. 36 attributed their i l lness to environmental factors and bel ieved recovery to be poss ib le through healthful d iets and lifestyle changes . W o m e n using A C T s differed only in the e m p h a s i s they p laced on s t ress as a causat ive factor in i l lness. A l s o of interest were the women 's percept ions about the deve lopment of their health beliefs. A lmost all of the w o m e n using A C T s descr ibed their health beliefs to be recently formed and perceived these beliefs to have been inf luenced by their exper iences of having cancer . In contrast, w o m e n using only convent ional med ic ine reported their bel iefs to be "l i felong" and inf luenced primarily by family or rel igious exper iences . Th is dif ference may be understood within the context that the w o m e n using A C T s had been living with cancer twice as long as w o m e n in the convent ional medic ine group, suggest ing that bel iefs about health and i l lness may change ove r t ime . Brown and C a r n e y (1996) postulated that as cance r b e c o m e s a more permanent part of a person 's life, bel iefs may shift to assist in the deve lopment of meaning within the i l lness exper ience. Thus , in order to expl icate the relat ionship between health and i l lness beliefs and treatment cho ice, research is needed that e n c o m p a s s e s the breast cancer trajectory, from early d iagnos is to survival (5 year or 10 year). Percept ions of N e e d for C a r e A spec ia l kind of health belief that has received minimal attention within genera l and cancer populat ions has been the impact of individuals' percept ions of need for care on the dec is ion to use A C T s . Need for care has been def ined as both a subject ive percept ion of risk (e.g., risk of cance r recurrence, quality of life) and an objective percept ion of need (e.g., cancer staging information) (Andersen, 1968; A n d e r s e n , 1995). Only one study has examined the speci f ic effect of need for care factors on A C T use. In their research on the motivations of C a n a d i a n pat ients us ing A C T s , Kelner and We l lman (1997a) found that the majority of A C T consumers perce ived their health problems to be ser ious (83%) and disruptive to their daily functioning (89%). In compar ison , 6 7 % of convent ional medic ine patients bel ieved their condit ion w a s negatively affecting their daily l ives. T h e s e f indings suggest that as individuals' perce ived need for care inc reases , they may be more will ing to use therapies that are outs ide the convent ional medica l sys tem. How need for care factors interrelate with other e lements of the treatment dec is ion-making process , such as health bel iefs, remains to be determined. Further support for a potential link between A C T use and need for care has been provided by a number of s tudies that have reported a link between anxiety and A C T use. In particular, A C T consumers have been found to report higher levels of psycholog ica l d is t ress than non-users (Burstein et al . , 1999; Furnham & Bhagrath, 1993; Fu rnham & Smi th , 1988). Th is dif ference has been attributed to A C T consumers ' longer i l lness careers and greater phys ica l dysfunct ion, result ing in more p ronounced dist ress (Furnham & Smi th , 1988). Montbr iand (1995b) a lso reported an associat ion between A C T use and anxiety, with those individuals express ing a high interest in A C T s being more likely to descr ibe s t ress as a 37 response to their cancer d iagnos is and treatment. A recent study of the psycholog ica l character is t ics of 117 Austr ian breast cancer outpatients using A C T s provided addit ional ev idence of an assoc ia t ion between distress and A C T use, with w o m e n using more than three A C T s tending to adopt a more depress ive coping style than w o m e n who used fewer A C T s (Moschen et a l . , 2001). High users of A C T s were a lso found to report poorer emot ional functioning than low users . Resea rche rs have been caut ious, however, in suggest ing that the use of A C T s be used as a screening test for clinically signif icant d ist ress and have encouraged further prospect ive, longitudinal research to examine the relationship between treatment cho ice and psycho log ica l d is t ress (Burstein & W e e k s , 1999). Contradictory ev idence of the assoc ia t ion between cl inical evaluat ions and A C T use does exist, however, in the literature. For example , in R isberg et al. 's (1995) compar ison of patients with mal ignant and non-mal ignant d i sease , cancer patients who used A C T s were more likely to be receiving palliative treatment than non-users, but their per formance s ta tus 1 2 w a s not signif icantly assoc ia ted with A C T use. In conc lus ion , s o m e empir ical support exists for an associat ion between perce ived need for care and A C T use. In particular, perceived se r iousness of a d i sease , chronicity of the i l lness, and anxiety have been impl icated as motivating factors of A C T use within cancer and genera l populat ions. T h e lack of prospect ive research , however, has prec luded researchers from conc lus ive ly determining the directionality of the relationship between psycho log ica l d istress and A C T use. Poss ib ly , commitment to a restrictive, detai led regimen of A C T s may result in excess i ve attention to i l lness and its ou tcomes, resulting in higher anxiety in high users of A C T s (Moschen et al . , 2001). Further research is warranted to examine the potential psycholog ica l s ide effects of A C T use. S u m m a r y of the Ro le of Health Bel iefs There is preliminary ev idence to suggest that individuals who use A C T s as part of their cancer care may hold speci f ic beliefs about their d i sease and the benefits of A C T s . A C T consumers within cancer populat ions may use A C T s as a means of maintaining hope and opt imism, particularly when faced with advanced or terminal cancer . A C T use by individuals living with cance r may a lso reflect their dissat isfact ion with or concerns about convent ional cancer treatments. Wha t is striking is that, with the except ion of s tudies by Ke lner and We l lman (1997a) and Y a t e s et a l . (1993), the research conducted to explore the role of health beliefs in predicting A C T use has occurred without direction from an explicit theoret ical f ramework. G i ven the many wel l -estab l ished theories of health behaviour, this gap is surpr is ing and may account 1 2 Assessed by the E C O G (European Cooperative Oncology Group) Performance Scale, which is used to assess how a patient's disease is progressing and how the disease affects the daily living abilities of the patient, as well as to determine appropriate treatment and prognosis. 38 for the broad array of health beliefs that have been tested. R e s e a r c h informed by theory would al low treatment dec is ions related to A C T s to be examined within the genera l rubric of health behaviour and al low compar isons with convent ional health behaviour. Wh i le there is a danger of oversimpl i fy ing reality in the development and testing of theoretical mode ls (Weiss , 1995), the appl icat ion of health behaviour theory in A C T research would provide a tentative foundat ion for the prediction and explanat ion of this complex phenomenon . Other Factors Associated with Alternative/Complementary Therapy Use Beyond health beliefs, the role of other factors in the dec is ion to use A C T s has been examined within both genera l and cance r populat ions. T h e s e factors include quality of life (Jordan & De lunas , 2001 ; M o s c h e n et a l . , 2001 ; Palt iel et al . , 2001), personal i ty character ist ics (Owens , Taylor , & Degood , 1999; Sturm, 2000; Sug imoto & Furnham, 1999), coping sty les (Moschen et al . , 2001), and convent ional medic ine utilization (Kabol i , Doebbe l ing , S a a g , & Rosen tha l , 2001). Two addit ional concepts that have received much attention within A C T research in cancer populat ions, and are the focus of d iscuss ion in this sect ion, are soc ia l support and control. Soc i a l Suppor t Within genera l populat ions, limited empir ical work has explored the assoc ia t ion between socia l support and A C T use. O n e except ion has been Kelner and We l lman ' s (1997a) examinat ion of the p rocess through which A C T consumers gain information about therapies and practit ioners. T h e majority of treatment and practice referrals were reported to be from family members , acqua in tances , co-workers, and other A C T providers. Very few A C T consumers (3%) reported receiv ing a recommendat ion from their physic ian regarding A C T s . Overa l l , one half of all patients using A C T s cited referrals by others as the primary motivation underlying their cho ice in therapy. Whi le treatment and pract ice referrals may be a quest ionable proxy measu re of soc ia l support, this research points to the socia l context in which individuals make treatment dec is ions speci f ic to A C T s . Addi t ional ev idence of the soc ia l context of treatment dec is ion-making in cance r populat ions is apparent in the literature. Quali tat ive work by Truant (1998), Gray et a l . (1997), and Montbr iand (1995a) has highlighted the inf luence of family members , f r iends, cancer survivors, co-workers , and health food store workers on treatment dec is ions made by w o m e n with breast cancer who use A C T s . In fact, many w o m e n reported feel ing overwhe lmed with the amount of information provided by wel l -meaning individuals about A C T s (Truant, 1998). Part icular ly persuas ive in encourag ing A C T use have been members of c a n c e r support groups, with severa l s tudies reporting support group participation as being an important determinant of A C T use (Boon et al . , 2000; G ray et al . , 1997; Lee et al . , 2000). 39 T h e possibil i ty of cancer patients being burdened by an abundance of information on A C T s led R isbe rg , K a a s a , Wist , and Me l som (1997) to inquire about the referral patterns of 126 patients in Norway. T h e majority of A C T consumers received their primary information about therapies from relatives and friend (64%), with 5 % stating that the med ia w a s their main referral sys tem. On ly 14% reported feel ing s o m e pressure from significant others to use A C T s , with those a g e d 30-45 years reporting the greatest s e n s e of obl igation. R i sbe rg et a l . (1997) sugges ted that for cancer patients and their family members , A C T use might be one way of cop ing with the uncertainty surrounding i l lnesses such as cancer . Other researchers focuss ing on w o m e n with breast cancer have a lso found relatives and fr iends to be pr imary sou rces of information about A C T s (Crocett i et a l . , 1998), a l though how influential family and fr iends are on treatment dec is ions has been quest ioned (Sa lmenpera , Suom inen , Laur i , & Puukka , 2001). Surprisingly, genera l practit ioners were a lso identified as being an important source of knowledge regarding therapies not offered by convent ional medic ine (Crocett i et al . , 1998). Ear l ier work by Lerner and Kennedy (1992) revealed the role of phys ic ians in introducing the idea of A C T s to non-cancer and cancer patients, with 3 1 % of part icipants identifying phys ic ians as being their primary source of information about A C T s . Th is f inding is surpr is ing g iven the number of participants (61.5%) in E isenberg et al. 's (1998) study who did not d isc lose their use of A C T s to their physic ian. T h e s e d isc repanc ies point to the need for further research to make c lear the distinction between soc ia l support and referral patterns. B a s e d on avai lable knowledge, Y a t e s et a l . (1993) conducted one of the few studies that has attempted to directly study the effect of soc ia l support on A C T utilization rates within cance r populat ions. Descr ib ing soc ia l support as "encouragement to use , " a signif icant assoc ia t ion between encouragement and the use of A C T s w a s demonstrated. T h o s e individuals who had received support in using A C T s were four t imes more likely to use A C T s than those who had received no encouragement . Further ana lys is , however, fai led to confirm the independent effect of encouragement to use A C T s on utilization. T h e limited research on the inf luence of soc ia l support on the dec is ion to use A C T s by individuals with cance r provides contradictory ev idence of an assoc ia t ion between these two concepts . However , r ich qualitative data have highl ighted the involvement of signif icant others, espec ia l ly family members , fr iends, and health professionals in treatment dec is ions , including the use of A C T s . Further study is required to elucidate the nature of the relat ionship between A C T use and soc ia l support and to determine the mechan ism through which cance r patients learn about A C T s and make the dec is ion to use these therapies. Explorat ion of the soc ia l and psycho log ica l c o n s e q u e n c e of giving and receiving encouragement to use A C T s is a lso warranted. 40 Contro l O n e var iable that has attracted cons iderab le interest as a potential motivator of A C T use within genera l and cancer populat ions has been the concept of control. Despi te wide variation in conceptual izat ion and instrumentation, the majority of research has suppor ted a posit ive relat ionship between A C T use and the desire for control. How control is conce ived or mani fested by patients who use A C T s , however, has yet to be conclus ively determined. T h e most f ocussed program of research on the associat ion between A C T use and control has been deve loped by Montbr iand (1995a; 1995b; Montbr iand & La ing , 1991). In an ethnographic study of A C T use by 75 acute care patients in C a n a d a , Montbr iand and Laing (1991) uncovered three themes of control: 1) perceived control; 2) internal-external control; and 3) i l lusion of control. T h e first theme e n c o m p a s s e d patients who perce ived themse lves as having the ability to e s c a p e or regain f reedom from the control of b iomedic ine. For these individuals, A C T use represented a strategy through which they recovered control of their health and covertly separa ted themse lves from the convent ional heal th-care sys tem. A C T use was a lso examined through the lens of Rotter's (1966) internal-external locus of control theory. Individuals who used therapies that were more psychologica l in nature appeared to keep control to themse lves , illustrating an internal orientation. In contrast, individuals who used physica l and/or spiritual therapies gave away their control to practit ioners or to a "Higher Be ing" , represent ing an external locus of control. Control w a s also found to f luctuate as patients p rogressed through the d i sease trajectory, suggest ing control to be a f lexible, rather than static, entity. Last ly, Montbr iand and La ing (1991) drew inspiration from gambl ing s tud ies to present A C T use as being an il lusion of control, in which patients discount the inf luence of chance on their health ou tcomes. S u c h conceptual izat ion lends support to an addit ional theme, desi re for control, which has been the subject of much research within cance r populat ions (Degner & R u s s e l , 1988; Degner & S loan , 1992; Degner, S loan , & V e n k a t e s h , 1997; Hack, Degner , & Dyck, 1994). In the face of an uncontrol lable d i sease , such as cancer , individuals may seek to inc rease their chance of survival and control of their i l lness through the use of A C T s . In consider ing the larger body of literature on A C T use within genera l and cance r populat ions, control has been l inked consistent ly with the dec is ion to use A C T s . In one of the first examinat ions of cancer patients using convent ional medic ine and A C T s , A C T consumers were found to be more likely to accept an active role in their health care than patients using only convent ional medic ine (Cass i le th et al. , 1984). The personal responsibil i ty held by A C T consumers w a s reflected in their cho ice of therapies that were life-style oriented rather than practi t ioner-control led. Whi le this research did not specif ical ly cons ider control as an intervening var iable in the. dec is ion to use A C T s , it provided preliminary ev idence of an assoc ia t ion between desi re for control and health behaviour. 41 In a survey of 125 outpatient oncology patients, Hiratzka (1985) found that individuals who held posit ive attitudes towards A C T s and had greater knowledge of A C T s sco red higher on the internal locus of control subsca le of the Mul t i -Dimensional Heal th Locus-of -Cont ro l S c a l e (Wal lston, Wal ls ton , & DeVel l is , 1978). Despi te the cri t ic isms of this sca le for it being too static and limiting (Furnham & Beard , 1995), Hiratzka (1985) conc luded that individuals with an internal orientation were more likely to seek out and to use information about A C T s than individuals holding a "powerful others" or "chance" orientation. T h e impl icat ions of this research , however, are limited because only attitudes towards and knowledge about A C T s were examined rather than actual treatment util ization. Fu rnham (Furnham & Bhagrath, 1993; Furnham & Forey, 1994; Furnham & Smith, 1988) ex tended Hiratzka's (1985) research by explor ing the associat ion between health locus of control and A C T use within the general populat ion. Us ing Lau and W a r e ' s (1981) heal th-speci f ic locus of control sca le , Furnham and Smith (1988) found homeopath ic patients to have signif icantly lower sco res on the provider control subsca le than patients attending a genera l practit ioner. Th is dif ference was attributed to homeopath ic patients' genera l d issat isfact ion with, and distrust of, convent ional medic ine. In a fol low-up study of a larger samp le of homeopath ic and convent ional medica l patients, a signif icant dif ference between the two study groups on the heal th-speci f ic locus of control sca le w a s reported (Furnham & Bhagrath , 1993). Th is di f ference, however, w a s found on the internal locus of control subsca le rather than the provider control sca le . Homeopa th ic patients were found to bel ieve more strongly in their ability to control their health than convent ional medic ine patients. Th is belief was attributed, in part, to homeopath ic patients' d isappointment with convent ional medic ine, which pushed them towards greater responsibi l i ty for their own health. Furnham and Forey (1994) provided further support for the assoc ia t ion between A C T use and the desi re for personal control over health dec is ions and less rel iance on convent ional medic ine practit ioners. More recent work, however, has cha l lenged the hypothet ical relat ionship between locus of control and A C T use, with signif icant d i f ferences among A C T and convent ional medic ine consumers being attributed to demograph ic di f ferences (i.e., age and i l lness history) rather than control orientation (Furnham et al . , 1995). This d isc repancy e m p h a s i z e s the need to cons ider the interactions among persona l , soc ia l , and cognit ive factors in conduct ing A C T utilization research . Y a t e s et a l . (1993) improved on previous research by explor ing the predict ive va lue of the concept "need for control" with regards to A C T use by cancer patients. N e e d for control w a s conceptua l ized as being one 's attitude towards having control over dec is ions about one 's cancer and its treatment. A C T users were found to express a stronger des i re for control over heal th-care dec is ions in compar ison with individuals using only convent ional t reatments. In contrast to Furnham et al. 's (1995) f indings, need for control was found to be an independent 42 predictor of A C T use within this populat ion. T h e validity of Ya tes et al. 's (1993) f indings, however, w a s tempered by the use of an invest igator-developed measure of con t ro l . 1 3 Ba lneaves et a l . (1999) add ressed this limitation by using a val idated measure of des i red control (i.e., Contro l Pre fe rence Sca le , Degner & S loan , 1992; Degner et al. , 1997 ) 1 4 in their study of A C T use in w o m e n with breast cancer . The f indings of this research, a long with Truant 's (1997) ethnographic study of the dec is ion-making p rocess of w o m e n with breast cancer who use A C T s , are d i s c u s s e d in greater detail in the fol lowing sect ion on treatment dec is ion mak ing. In summary , research within general and cancer populat ions has provided prel iminary ev idence of an assoc ia t ion between control and the use of A C T s . T h e lack of cons is tency in the definition and measurement of control has made compar isons ac ross studies difficult and has highlighted the need for more definitive theory development . Determining whether control is best operat ional ized as a desi re for control, an internal/external orientation, or an il lusion of control will contribute signif icantly to research explor ing the relationship between A C T use and control. Examinat ion of the role of control in relation to other health beliefs would further current understanding of the complexi t ies assoc ia ted with treatment dec is ions speci f ic to A C T s Treatment Decision Making by Women Living with Breast Cancer This sect ion provides a conc ise summary of research examin ing treatment dec is ion making by w o m e n living with breast cancer . W o m e n ' s exper iences and preferences related to convent ional treatment dec is ion making are examined , focuss ing on w o m e n ' s preferred role in dec is ion mak ing, demograph ic and cognit ive factors assoc ia ted with treatment dec is ion mak ing, and the ways in which treatment dec is ions are made. T h e limited literature on treatment dec is ion making within the context of A C T use a lso is examined . Conventional Treatment Decision Making T h e majority of studies examin ing the convent ional treatment dec is ion-mak ing p rocess of w o m e n with breast cancer has focussed on what role w o m e n want to play in their treatment dec is ions (Beaver et al . , 1996; B i lodeau & Degner, 1996; Degner , Kr ist janson et al . , 1997; Degner & S l o a n , 1992; Hack et al . , 1994; Kenny, Qu ine, Shie l l , & C a m e r o n , 1999; Street & Voigt, 1997). The f indings have been contradictory, with some researchers suggest ing that w o m e n with breast cancer prefer to take on an active or col laborat ive role in their treatment dec is ions (Degner, Krist janson et al. , 1997; Keat ing, Guadagno l i , Landrum, Borbas , & W e e k s , 1 3 Yates expressed concern regarding the reliability of the 2-item Encouragement to Use A C T measure and suggested that a more reliable measure of control should be used in future A C T research. (P. Yates, personal communication,. October 31, 1994) Degner & Sloan's (1992) Control Preference Scale has been well validated through a series of studies and across a range of populations (Beaver et al., 1996; Bilodeau & Degner, 1996; Degner, Kristjanson et al., 1997; Degner & Sloan, 1992; Degner, Sloan et al., 1997). 43 2002 ; Mas tag l ia & Kr ist janson, 2001) and other researchers suggest ing that w h e n faced with a l i fe-threatening d iagnos is such as breast cancer , many w o m e n prefer to defer treatment dec is ions to their phys ic ians (Beaver et al . , 1996; B i lodeau & Degner , 1996; Degner & S loan , 1992). Th is d isc repancy , a long with data that sugges ts that being offered an act ive role in treatment dec is ion may either positively (Keat ing et a l . , 2002; Street & Voigt, 1997) or negatively (Fal lowfield, Hal l , Magui re , B a u m , & A 'He rn , 1994; Reaby , 1998) inf luence women ' s physical and psycho log ica l wel l being, has emphas i zed the importance of individual izing dec is ion-mak ing strategies. T h e need for improved communicat ion between health-care providers and w o m e n with breast cance r regarding expectat ions of the dec is ion-making p rocess has been further suppor ted by research identifying d isc repanc ies in women 's preferred and actual role in treatment dec is ions (Bi lodeau & Degner, 1996; Degner, Krist janson et al . , 1997; Keat ing et al . , 2002). For example , in B i lodeau and Degner 's (1996) survey of 74 w o m e n newly d iagnosed with breast cancer , only 1 9 % of w o m e n preferring a col laborat ive role were able to a s s u m e such a role in the cl inical sett ing. Whi le barriers to achieving a more active role in dec is ion making have been identified (e.g., lack of information, lack of t ime, physical and mental d istress, poor patient-provider communicat ion skil ls (Reaby, 1998; Sain io , E r i ksson , & Laur i , 2001), no known studies have examined the difficulties faced by w o m e n preferring a more pass ive role in treatment cho ice in achiev ing their des i red level of involvement in treatment dec is ions . Fac to rs that have been significantly assoc ia ted with the preferred dec is iona l role of w o m e n with breast cancer include age, educat ion, and income level (Beaver et al . , 1996; B i lodeau & Degner , 1996; Degner & S loan , 1992; Hack et al . , 1994; P ie rce , 1993). In genera l , young w o m e n with a high soc ioeconomic status have been found to prefer act ive roles in treatment dec is ions . In contrast older w o m e n and those from lower soc ioeconomic groups have preferred less control in their treatment cho ices . The amount of var iance in preferred dec is ional role exp la ined by demograph ic factors, however, has been of l imited cl in ical s ign i f icance (Beaver et a l . , 1996). Despi te the controversy over the role of w o m e n with breast cance r in treatment dec is ions , researchers have deve loped s o m e insights into the types of information w o m e n would like during the dec is ion-making p rocess . Hack et al. (1994) examined the information needs of 17 w o m e n d iagnosed with stage I or II breast cancer who were two to six months post- d iagnos is . W o m e n who preferred an act ive role in choos ing their breast cance r treatment were found to desi re detai led information regarding their d iagnos is , treatment alternat ives, and treatment procedures. Al l women , notwithstanding their preferred dec is iona l role, were found to want information about the s ide effects of treatment and their prognosis . T h e f indings of this study, however, are limited by the smal l samp le s ize . In a larger study of 74 w o m e n d iagnosed 44 with breast cancer (Bi lodeau & Degner , 1996), information needs included (listed in order of perce ived re levance) : s tage of d i sease , l ikel ihood of cure, treatment opt ions, physica l and emot ional s ide effects, risk to relatives, impact on socia l activit ies, sel f -care i ssues , and sexual i ty. W o m e n ' s ability to assimi late technical information about their d iagnos is , treatment, and prognos is and phys ic ians ' ability to communica te such information in an understandable manner, however, has been quest ioned (Kenny et al . , 1999). In terms of the actual dec is ion made with regards to breast cance r treatment, the majority of s tudies has focussed on women 's dec is ion to have either mastec tomy or breast- conserv ing surgery (i.e., lumpectomy) (Gral ing & Grant, 1995; Mastag l ia & Kr ist janson, 2001 ; Stafford, S z c z y s , Becker , Ande rson , & Bushf ie ld, 1998; Street & Voigt, 1997; W a r d , Heidr ich, & Wo lberg , 1989). T h e proportion of w o m e n choos ing breast-conserv ing surgery over mastec tomy has var ied cons iderab ly in the literature. Factors found to discr iminate between surg ica l cho ice include age, educat ion, income level, geograph ic res idency, and physic ian preference (Gral ing & Grant, 1995; Hughes , 1993; Mastag l ia & Krist janson, 2001 ; Stafford et al. , 1998). Y o u n g urban w o m e n with high soc ioeconomic status were found to prefer lumpectomy to mastectomy. T h e s e di f ferences raise interesting quest ions regarding women 's percept ions of risk and the perce ived availabil ity of breast cancer treatment based on f inancial and travel considerat ions. Conf l ict ing results have been found regarding the role of information and phys ic ian communicat ion in women ' s surgery dec is ions (Hughes, 1993; Mastag l ia & Kr ist janson, 2001). F e w studies have examined the actual dec is ion-making p rocess of w o m e n with breast cancer . O n e except ion is P ie rce (1993), who used grounded theory to explore the dec is ion- making exper iences of 48 w o m e n newly d iagnosed with ear ly-stage breast cancer . Three patterns of dec is ion making were uncovered: a) deferrer; b) delayer; and c) del iberator. Jus t over 4 0 % of the w o m e n were c lassi f ied as being "deferrers", which w a s def ined by the women ' s lack of conflict over treatment options, their preference to defer to their phys ic ian, and limited del iberat ion. Fo r many of these women , they did not perceive themse lves as having a treatment cho ice. In contrast, 4 4 % of the w o m e n were c lassi f ied as "delayers", who vaci l lated between treatment opt ions and had difficult dist inguishing between the benefits and costs of the different cho ices . T h e s e w o m e n often made a dec is ion using the "first di f ference rule", in which the treatment option that had the first detectable benefit over the other treatments w a s chosen . For only 1 5 % of the w o m e n , a "deliberator" role in dec is ion making was identif ied. T h e s e w o m e n accep ted a persona l responsibil i ty for their dec is ion and deve loped a structured del iberat ion plan to sort through the avai lable treatment opt ions and to seek information. A l though this latter pattern of dec is ion making w a s c losest to the normative mode ls presented in the dec is ion- making literature (Janis & M a n n , 1977; S lov ic , Fischhoff, & Lichtenstein, 1977; Tversky & K a h n e m a n , 1981; Tversky & Shafir, 1992), w o m e n who were del iberators exper ienced the 45 greatest psycholog ica l distress in making their treatment dec is ions compared to w o m e n who used other dec is iona l sty les. P ie rce (1993) was caut ious in judging one dec is ion-mak ing style as being better and encouraged long-term fol low-up to determine women ' s sat isfact ion or regret with their treatment dec is ions . In summary , research on treatment dec is ions by women with breast cancer has revealed that whi le s o m e w o m e n may prefer an act ive role in the dec is ion-mak ing p rocess , other w o m e n may be more comfortable in being less involved in treatment cho ices . That the dec is ion-mak ing exper ience is stressful for all women , notwithstanding the preferred dec is iona l role, is apparent and e m p h a s i z e s the need for c lear communicat ion regarding treatment opt ions and the dec is ion-mak ing p rocess . Heal th-care providers must a lso provide sufficient information to al low those w o m e n interested in having more control over their treatment dec is ions to make informed cho ices . A l though the role of control in treatment dec is ion making has been well s tudied, further research is warranted on how w o m e n with breast cancer make dec is ions and what are other inf luencing factors. Treatment Decision Making and Alternative/Complementary Therapies T o date, few studies have been conducted on the dec is ion-making p rocess of consumers of A C T s , particularly individuals d iagnosed with cancer . Except ions include Montbr iand (1995b), Truant (Truant, 1997; Truant & Bottorff, 1999), and Ba lneaves et al. (1999). A l though much of this work appears to over lap the research previously d i s c u s s e d on the assoc ia t ion between control and A C T use, these studies are d i scussed here in the context of treatment dec is ion mak ing. G i ven the body of research that has f ocussed on the role of control in the treatment dec is ions of w o m e n with breast cance r (B i lodeau & Degner , 1996; Degner , Kr ist janson et al . , 1997; Degner & S loan , 1992; Hack et al . , 1994; Mastag l ia & Kr ist janson, 2001), it is not surpr is ing to find such commonal i ty . In the first study ment ioned, Montbr iand (1995a) found the theme of control interwoven throughout her examinat ion of cancer patients' dec is ional strategies speci f ic to A C T s . T h e first p h a s e of her study involved the deve lopment of a dec is ion tree b a s e d on interviews with 48 individuals d iagnosed with respiratory or digest ive sys tem cancers . The dec is iona l tree cons is ted of 21 quest ions that differentiated individuals who exp ressed high interest in A C T s , regular interest in A C T s , 1 5 or were interested in b iomedica l t reatments only. T h e main t hemes of the dec is ion tree included the fol lowing: (1) preferred treatment methodology, (2) sec recy about al ternat ives, (3) soc ia l group inf luence, (4) considerat ions of cost, (5) perce ived st ress, (6) des i red dec is iona l control, (7) judgements about cure, (8) change and search ing , and (9) faith in 1 5 High and regular interest groups were differentiated by the high interest respondents intending on using A C T s as a consequence of their cancer diagnosis and regular interest respondents continuing to use those A C T s they had been using prior to diagnosis. 46 the pract ice. T h e dec is ion tree's predictive value w a s tested in the s e c o n d phase of the study, in wh ich 252 cance r patients were interviewed. Overa l l , 9 0 . 4 % of respondents were correct ly c lassi f ied using the dec is ion tree, with 2 2 % being high interest group members , 4 8 % classi f ied as regular interest group members , and 2 9 . 8 % responding in a manner consistent with the b iomedica l only group. T h o s e individuals included in the high interest group were more likely to be young and female , have a more severe cance r d iagnos is , and report a higher level of educat ion and income than those in the b iomedical only group. High interest members were a lso more secret ive about their use of A C T s , received support from their soc ia l group to use A C T s , wanted a high level of dec is ional control, and held health beliefs support ive of alternative treatment parad igms. Interestingly, high interest members perce ived s t ress a s being a motivating factor in their dec is ion to use A C T s . With regards to control, Montbr iand (1995a) found high interest members ' desire for control over health care w a s assoc ia ted with severa l factors, including soc ia l , cultural, and economica l inf luences. S h e sugges ted that making the dec is ion to use A C T s al lowed s o m e cancer patients to exp ress their i ndependence from the convent ional heal th-care sys tem. The amount of var iance in A C T use expla ined by preferred role in treatment dec is ions, however, was not c lear from the model deve loped by Montbr iand (1995a). Further predictive work is needed to model the concept of control a long with other health beliefs and soc iobehaivoura l var iables in relation to the dec is ion to use A C T s . Qual i tat ive work by Truant (Truant, 1998; Truant & Bottorff, 1999) has provided further rich descr ipt ion of the dynamic nature of treatment dec is ion making in w o m e n with breast cancer who use A C T s . Centra l to the dec is ion-making p rocess was the issue of control. T h e w o m e n (N = 16) who part icipated in this grounded theory study descr ibed their use of A C T s as being a means though which control could be regained. T h e motivations underlying the need to regain control, however, var ied as w o m e n moved through the cancer trajectory. Newly d iagnosed w o m e n exp ressed a desi re to reduce their feel ings of loss and to take act ion. T h e s e w o m e n reported making quick, and often uninformed, dec is ions about A C T s before beginning convent ional treatment. For many w o m e n at this point in their d i sease , dec is ions related to convent ional cancer treatments took p recedence over dec is ions related to A C T s . Fol lowing surgery, a des i re to take back control from the convent ional heal th-care sys tem and to increase control over the cancer and one 's health b e c a m e paramount. W o m e n at this point in the trajectory exper ienced less anxiety and were able to take more time to research treatment opt ions and to c h o s e therapies that fit best with their lifestyle and belief sys tems. Beyond increas ing a s e n s e of control, A C T s were a lso used to manage the s ide effects of convent ional cance r therapies, boost the immune sys tem, promote well be ing, and prevent a recurrence of breast cancer . O n c e convent ional treatment had ended and the w o m e n began to regain a s e n s e of "normality" in their l ives, they cont inued to use A C T s in an attempt to e n h a n c e their i l lusion or 47 percept ion of control. In using A C T s , w o m e n felt they were continuing to exert s o m e measure of control over their cancer and general health. A l though all w o m e n using A C T s reported taking an act ive role in their dec is ions related to A C T s , they descr ibed more pass ive roles in the treatment dec is ion-mak ing p rocess within the convent ional heal th-care sys tem. Th is f inding, in part, contradicts past research on women 's preferred role in treatment dec is ions (Bi lodeau & Degner , 1996; Degne r & S loan , 1992) and suggests that desi re for control may fluctuate not only ac ross the cance r trajectory but a lso ac ross treatment dec is ions. The dec is ion to use A C T s may be one way in which w o m e n with breast cancer are able to play a more active role in treatment dec is ions while maintaining their relat ionships with convent ional heal th-care providers. Ba lneaves et al. (1999) a lso examined A C T dec is ion making from the perspect ive of control by using Degner and S loan 's (1992; 1997) Control Pre ference S c a l e to determine the preferred dec is iona l role of w o m e n with breast cance r us ing A C T s . O f the 52 w o m e n interviewed, the majority of A C T users (94%) were found to prefer an active or col laborat ive role in treatment dec is ion making, whereas only 5 6 % of w o m e n using only convent ional medic ine were found to prefer similar roles. Simi lar to Truant and Bottorff (1999), B a l n e a v e s et al. (1999) conc luded that the dec is ion to use A C T s may be an important mechan i sm through which w o m e n with breast cance r gain control, knowledge, and responsibi l i ty over an i l lness that appears , at t imes, uncontrol lable. T h e research on treatment dec is ions related to A C T use in cancer populat ions has provided insight into the role of control as both a motivator and an outcome of the dec is ion to use A C T s . T h e inf luence of other factors, including stage of d i sease and convent ional treatment, psycho log ica l d istress, and soc ia l support on A C T dec is ions has been a lso sugges ted . Addi t ional dec is ion-making research is needed , however, that exam ines the variability of A C T use beyond a "yes-no" dichotomy and the role of both soc ia l and cognit ive factors in inf luencing the manner in which A C T s are used. Chapter Summary This chapter has reviewed and crit iqued the two main areas of literature: alternative and complementary therapy use in genera l and cancer populat ions and treatment dec is ion making in w o m e n living with breast cancer . With regards to the A C T literature, three major a reas of A C T research within genera l and cance r populat ions were rev iewed: the preva lence of A C T use , the character is t ics of A C T consumers , and the soc ia l and cognit ive motivations of A C T use. A l though lacking in conc ise and consistent terminology, this body of literature suggests A C T use to be a growing health- care phenomenon within industr ial ized nations. T h e increase in the use of A C T s within genera l populat ions has been mirrored within cancer populat ions, with a limited body of literature 48 suggest ing that A C T s play a signif icant and integral role in the exper iences of w o m e n living with breast cancer . Further research is needed to deve lop more speci f ic and rel iable statist ics on the preva lence of A C T use within breast cancer populat ions. T h e literature on the character ist ics of A C T consumers within genera l and cancer populat ions has provided inconclusive ev idence of assoc ia t ions among personal and soc ia l factors and the use of A C T s . Gender , age, soc ioeconomic status, health exper iences , and health bel iefs have all been implicated as predisposing factors in the dec is ion to use A C T s . The literature has a lso pointed towards potential assoc ia t ions between demograph ic character ist ics, health bel iefs, and the use of A C T s by individuals living with cancer . T h e s e prel iminary f indings underscore the importance of moving from descript ive research to inquiry that is grounded in theory to explain and understand the potential interrelationships among soc iodemograph ic character ist ics, personal belief sys tems, and A C T use within cancer populat ions. In particular, the research on A C T use by w o m e n with breast cancer has ra ised quest ions regarding the role of health and i l lness beliefs in the dec is ion to use A C T s and the interactions among beliefs and soc iodemograph ic factors, and A C T use. R e s e a r c h on the util ization of A C T s has a lso revealed severa l factors that potentially motivate individuals to search for treatment alternatives outside of the convent ional heal th-care sys tem. Despi te the lack of prospect ive, longitudinal research, strong assoc ia t ions have been identified between soc ia l support and control and the use of A C T s . The limited research explor ing the motivations of A C T use in w o m e n with breast cancer has provided s o m e support for these factors; however, further study is required to fully elucidate the nature and quality of the relat ionships among these concepts and women 's use of A C T s . Greater specif icity is a lso required regarding the context within which A C T s are used in breast cancer populat ions. Wh i l e the majority of p reva lence research has cons idered A C T use to be singular in purpose (i.e., curative), qualitative work has sugges ted that A C T s are used more discretely throughout the breast cance r trajectory (Truant, 1998). R e s e a r c h on treatment dec is ion making has shed further light on the way in which w o m e n with breast cancer make dec is ions and what soc ia l and cognit ive factors may affect their treatment dec is ions . T h e desire for control has been found to be an important var iable in women ' s dec is ion-mak ing process , with treatments such as A C T s represent ing a means of regaining control from the b iomedical establ ishment and assert ing one 's independence . M u c h of the work on treatment dec is ion making speci f ic to A C T s has occurred, however , without a strong theoret ical f ramework. By examin ing the treatment cho ices of w o m e n with breast cance r within an accep ted and recognized cognit ive framework, those factors assoc ia ted with treatment dec is ions related to A C T s are uncovered. 49 In summar iz ing the literature, A C T use has been descr ibed a s a c o n s e q u e n c e of soc iobehav ioura l (i.e., demograph ic factors, previous exper ience, soc ia l support) and cognit ive factors (beliefs about health, i l lness, and control). The descript ive nature of past research , however, has h indered attempts to test the interrelationships among these factors and A C T use, and examine A C T use within a recogn ized theory of health behaviour. T h e p roposed research will add ress these limitation by developing and testing three causa l mode ls of A C T use by w o m e n with breast cancer , focuss ing on the personal , soc ia l and cognit ive factors that have been impl icated in the literature as being assoc ia ted with A C T use. T h e fol lowing chapter de l ineates more fully the p roposed mode ls of A C T use and the theoret ical underp innings of the hypothes ized relat ionships. 50 C h a p t e r 3 Theoretical Models Despite the existence of a vast body of literature describing the use of alternative/ complementary therapies (ACTs) by general and cancer populations, few researchers have attempted to examine ACT use within the context of a theoretical framework of health behaviour. This has resulted in ACT use being presented in a disjointed and fragmented manner that has prevented the causal relationships between sociodemographic characteristics, attitudes, health beliefs, and the use of ACTs from being fully elucidated within a comprehensive theory. Without this knowledge, health professionals are unable to understand which individuals are most likely to use ACTs, their motivations for such health behaviour, and the context in which ACT use is most prevalent. The purpose of this study is to develop and test three hypothetical models of ACT use by women with breast cancer. Using key constructs derived from the Health Belief Model (Janz & Becker, 1984; Maiman & Becker, 1974; Rosenstock, 1974b), the use of ACTs by women who had been diagnosed and treated for breast cancer was examined within the context of preventive, ameliorative, and restorative health behaviour. In developing and testing three distinct models of ACT use, the purpose underlying women's use of therapies beyond conventional medicine and the role of health beliefs in motivating ACT use across a range of health contexts were examined. The following discussion provides an overview of the most well known models of health behaviour, including the Health Belief Model, as well as a detailed description of the three hypothetical models of ACT use that were tested in this study. Empirical support for the postulated models and structural relationships is also provided. Models of Health Behaviour Since the 1960s, numerous sociobehavioural models have been developed in an attempt to further understanding of the decision-making process underlying the use of selected 51 health serv ices . In this sect ion, a brief outline of three of the most famil iar mode ls of health behaviour is provided, descr ib ing how each model conceptua l izes health act ion. T h e advan tages and d isadvantages of each model a lso are presented. Behavioural Model of Health Care Utilization O n e of the first mode ls of health behaviour to be advanced was A n d e r s e n ' s (1968; 1995) behavioural model of health care utilization. Original ly deve loped to explain the use of health serv ices by fami l ies, the model has been appl ied ac ross a variety of behaviours, including utilization of convent ional heal th-care serv ices (Barri l leaux & Miller, 1992; B a z a r g a n , Baza rgan , & Baker , 1998; C o h e n , 1993; Potvin, Cami rand , & Be land , 1995), sel f -care activit ies (F leming, G iache l lo , A n d e r s e n , & Andrade , 1984; F o s u , 1989) and the use of A C T s (Kelner & We l lman , 1997a). T h e behavioural model conceptua l izes health behaviour as being a product of complex interrelat ionships among predisposing (personal and soc ia l structures), enabl ing ( resources and barriers to care), and need-for-care (perceived risk and need) factors (Andersen, 1968; A n d e r s e n & N e w m a n , 1973; A n d e r s e n , 1995). Of these factors, perceived need-for-care has been found to be the strongest predictor of health behaviour (Andersen, 1995). Whi le ambit ious in its attempt to account for total health serv ice utilization, Ande rsen ' s model has been descr ibed as a theoret ical f ramework of personal and soc ia l factors rather than an actual theory of health behaviour (Kirscht, 1974). T h e model lacks specif icity and is, therefore, restricted in its appl icat ion to explor ing the soc ia l cognit ions (i.e., health beliefs) assoc ia ted with heal th-care dec is ions . Health Locus of Control In an attempt to better explain and predict health behaviour at the soc ia l cognit ive level , severa l theor ies have been deve loped using the construct of locus of control. Def ined as the degree to wh ich individuals perceive events in their l ives to result from their own act ions and therefore control lable (internal control), or as being unrelated to their own behaviour and beyond their control (external control) (Lefcourt, 1976), locus of control or iginated within the traditions of soc ia l learning theory (Rotter, 1966; Wal ls ton et al . , 1978). Soc ia l learning theorists conceptua l ize behaviour, including health act ion, to be a function of both an individual 's expec tanc ies about the c o n s e q u e n c e s of one 's act ions and ability to perform a behaviour and the va lue of the expec ted outcome (Oberle, 1991; Rosens tock , Strecher, & Becker , 1988). Wal ls ton et a l . (1978) further refined the locus of control construct by develop ing the mult id imensional health locus of control ( M H L C ) sca le , which measures the degree to which individuals perceive their health to be a c o n s e q u e n c e of their own act ion, the action of powerful others, or chance . Despi te wide appl icat ion to a variety of health behaviours (Rosens tock et al . , 1988; Z ind ler -Wernet & W e i s s , 1987), health locus of control theories have been able to explain only a minimal amount of var iance in health behaviour (Conner & Norman , 1996). T h e theor ies 52 have been cr i t ic ized for their lack of stability ac ross health behaviours and their fai lure to incorporate perce ived value of health. Theory of Reasoned Action T h e theory of reasoned action, a lso known as the theory of p lanned behaviour, has extended the s c o p e of soc ia l cognit ive theor ies by examin ing not only persona l bel iefs and attitudes towards health, but a lso the soc ia l norms assoc ia ted with health behaviours (Ajzen & F ishbe in , 1980; Lauver, 1992). Within this model , health behaviour is p roposed to be a c o n s e q u e n c e of one 's intentions, or health motivations, which are in turn der ived from beliefs about the perce ived c o n s e q u e n c e s of an act ion, the normative value of those c o n s e q u e n c e s , and one 's capaci ty to perform the act ion. Individuals are bel ieved to engage in health behaviour if they perceive the action to result in an outcome that they value, if they bel ieve that signif icant others des i re they should act, and if they bel ieve they have the needed resources to success fu l l y perform the behaviour (Conner & Norman, 1996). The theory of reasoned action has been u s e d in examinat ions of a variety of health behaviours, including smok ing (Marin, Mar in , Pe rez -S tab le , O te ro -Saboga l , & S a b o g a l , 1990), sexual behaviour (Chan & F ishbe in , 1993), and health screen ing (Lauver & Ange rame , 1993). The model and its assoc ia ted proposi t ions, however, have not received unequivocal support within the literature. Foremost , health bel iefs and attitudes have been found to have direct, rather than indirect, effects on health behaviour (Pender & Pender , 1986). Th is finding cal ls into quest ion the importance of intention in predicting health behaviour. T h e theory of reasoned action has a lso fai led to cons ider the impact of factors such as previous exper ience with a behaviour, which has been shown to be predict ive of health action (Lauver, 1992). Summary T h e previous d iscuss ion provided a conc ise overview of se lec ted theor ies that have been used in past research to examine the motivations and cognit ions underly ing the dec is ion to engage in health behaviour. A wide variety of factors, including beliefs about expectancy, va lue, control, and self-eff icacy have been implicated as being central to motivating health act ions. Within the context of this study, however, the limitations of these mode ls create doubt about the applicabil i ty of these theories in research examining the use of A C T s . G i ven the nascent s tage of deve lopment of this field of study, a theory is needed that provides an e lementary foundat ion for conceptual iz ing the soc ia l cognit ions assoc ia ted with A C T use. Wi th health beliefs forming the most bas ic component of the above mode ls , the Heal th Bel ief Mode l and its potential appl icat ion in the present study is cons idered in the fol lowing sect ion. The Health Belief Model T h e Heal th Bel ief Mode l (HBM) arose in the 1950s in response to a ser ies of research prob lems faced by researchers in the United States Publ ic Health Serv i ces . Frustrated by their 53 inability to expla in the failure of many preventive health serv ices and screen ing programs, the H B M w a s deve loped as a means of predicting and modifying health behaviour. Drawing from Lewin 's (1951) theory of va lence, which cons iders act ions to be determined by posit ive, negat ive, and neutral forces within the environment, the H B M hypothes izes that health behaviour is a c o n s e q u e n c e of an individual 's evaluat ion of the perceived threat of an i l lness and the potential benefits and costs of a speci f ic health action (Janz & Becker , 1984; Rosens tock , 1974b). Simi lar to other expectancy-va lue mode ls (Slovic et al . , 1977), the H B M conceptua l i zes health behaviour as arising from subjective percept ions of probability and utility and as being the c o n s e q u e n c e of an evaluat ive, dec is ion-making p rocess . Within the H B M , the perceived threat of an i l lness is dependent upon two bel iefs, perceived susceptibility to i l lness and the perceived severity of the c o n s e q u e n c e s of an i l lness (Sheeran & A b r a h a m , 1995). Perce ived susceptibi l i ty is def ined as "one 's subject ive percept ion of risk of contract ing a condi t ion" (Janz & Becker , 1984, p. 2) and captures an individual 's s e n s e of vulnerabil i ty to i l lness, resusceptibi l i ty, and belief in d iagnos is . Pe rce i ved severi ty is def ined as " feel ings concern ing the se r iousness of contracting an i l lness" (Janz & Becker , 1984, p.2) and inc ludes not only evaluat ions of the cl inical c o n s e q u e n c e s of i l lness (i.e., death, disability, and suffering), but a lso the soc ia l c o n s e q u e n c e s of a condit ion (i.e., work, family life, and relat ionships). Together , perceived susceptibi l i ty and severity provide the force or motivation to act (Rosens tock , 1974b). The course of action that is taken is determined by two sets of bel iefs about behaviour, including the perceived benefits or eff icacy of a health behaviour and the perceived barriers to enact ing a behaviour. Perce ived benefits are def ined as "bel iefs regarding the ef fect iveness of the var ious health act ions avai lable in reducing the d i sease threat" (Janz & Becker , 1984, p. 2) and refer to a lessening in either perceived susceptibi l i ty to or perce ived se r i ousness of an i l lness. In contrast, perceived barriers represent the "potential negat ive aspec ts of a particular health act ion" (Janz & Becker , 1984, p. 2) and include such factors as inconven ience, expense , pain, and effort. In consider ing which health behaviour to undertake, J a n z and Becke r (1984) sugges ted that a kind of "cost-benefi t" analys is occurs , with individuals weigh ing the perce ived eff icacy of health behaviour against its assoc ia ted costs . Whi le percept ions of susceptibi l i ty, severity, benefits, and barriers provide the motivation and direction underlying health behaviour, the H B M also p roposes that a cue to action must be present to provoke an individual to act. Despi te the limited research examin ing the role of cues to action in the H B M (Janz & Becker , 1984; S h e e r a n & Ab raham, 1995), it is sugges ted that cues serve as instigating events that set behaviour in motion (Rosenstock , 1974b). C u e s may be both internal (e.g., symptoms, pain) or external (e.g., encouragement from others, media) and vary in the level of intensity based on one 's perceived susceptibi l i ty and severity. For those individuals with little accep tance of their susceptibi l i ty to, or the severity of an i l lness, an intense 54 cue to act ion would be needed to provoke behaviour. Individuals who perceive themse lves as being highly vulnerable to a ser ious i l lness would require only a minor cue for action to engage in health behaviour. T h e majority of studies utilizing the H B M have focussed on the applicabil i ty of the theory within the context of preventive health behaviour, which has been def ined as behaviour that is undertaken in an attempt to prevent d i sease or to detect d i sease in an asymptomat ic s tage (Rosens tock , 1974a). S o m e researchers have conf i rmed, however, the re levance of the H B M to sick role behaviour and illness behaviour (Becker, 1974; Kirscht, 1974). S ick role behaviour has been descr ibed as those act ions used by individuals who are socially recognized as being ill to restore health or to prevent the further progression of d i sease (e.g., compl iance with a treatment regimen) (Janz & Becker , 1984). In contrast, i l lness behaviour refers to those activit ies under taken by individuals who feel ill for the purposes of determining their health status and d iscover ing poss ib le remedies for their perceived distress (e.g., clinic utilization) (Kas l & C o b b , 1966). It has been acknowledged by s o m e theorists that the line between sick role and i l lness behaviour is blurred and, at t imes, difficult to d iscern (Kirscht, 1974). The distinction between s ick role and i l lness behaviour as operat ional ized in this study b e c o m e s apparent later in this chapter w h e n the use of A C T s by w o m e n with breast cancer is cons idered from the context of symptom managemen t (i.e., s ick role behaviour) versus the response to amb iguous and ill- def ined concerns related to genera l well being (i.e., i l lness behaviour). Desp i te cr i t ic isms of the H B M as being insufficiently conceptua l ized and lacking c lear and empir ical ly suppor ted relat ionships among the model constructs (Davidhizar, 1983; Mikhai l , 1981; S h e e r a n & A b r a h a m , 1995), the H B M has been used in a wide range of health research (Janz & Becker , 1984). The H B M has been particularly useful in cancer research , providing a means of explor ing a variety of health behaviours, including breast sel f -examinat ion (Ca lnan & Rutter, 1986; C h a m p i o n , 1991; Champ ion & Miller, 1996; Rut ledge, 1987; St i l lman, 1977), cerv ical cance r screen ing (Burak & Meyer , 1997), and compl iance with convent ional cancer treatment (Newel l , Pr ice , Rober ts , & Baumann , 1986). In addit ion, research compar ing the predict ive capaci ty and pars imony of a variety of health behaviour theor ies, has suppor ted the use of a modif ied H B M in predicting health act ions (Mul len, Hersey , & Iverson, 1987; Murray & M c C M i l l a n , 1993). T h e s e studies offer support for the potential appl icat ion of the H B M within research that exp lores the health behaviour of w o m e n living with breast cancer , including their use of A C T s . Wh i le the H B M is limited in its account ing for the var iance in health behaviours exp la ined by attitudes and health beliefs, the theory could potentially provide va luab le insight into the motivations and beliefs that underl ie breast cancer patients' commitment to using A C T s . 55 Theoretical Models of Commitment to Alternative/Complementary Therapies Prev ious research on the use of A C T s by cancer patients, including w o m e n living with breast cancer , has revealed numerous motivations underlying the dec is ion to use therapies that are not offered as part of convent ional medica l care. For s o m e individuals, A C T s are used to increase one 's c h a n c e s of survival and to prevent a recurrence of cancer (Downer et al . , 1994; Millar, 1997; Truant, 1997). Other cancer patients find themse lves struggling with the adverse effects of convent ional cancer treatment and use A C T s as a means of coping with their phys ica l , emot ional , and spiritual d istress (Crocetti et al . , 1998; Furnham & Kirkcaldy, 1996). To capture the d iverse health contexts in which individuals with cancer may use A C T s , three theoret ical mode ls of A C T use have been deve loped . T h e s e models , der ived from the H B M (Janz & Becker , 1984; Rosens tock , 1974b), cons ider women 's use of A C T s from a preventive, s ick role, and i l lness behaviour perspect ive. Whi le the three mode ls of behaviour are not d iscont inuous (Rosenstock , 1974a), testing each of the mode ls separate ly al lows the health beliefs and attitudes underlying the dec is ion to use A C T s to be most clearly conceptua l ized within an appropriate theoretical and contextual f ramework. The fol lowing d i scuss ion presents a theoret ical descr ipt ion of each of the p roposed models of A C T use, with the Prevent ive Mode l of A C T U s e providing a template for the Amel iorat ive and Restorat ive Mode ls of A C T U s e . Empir ica l ev idence support ing the postulated relat ionships among study constructs is a lso provided. The Preventive Model of Alternative/Complementary Therapy Use Figure 1 il lustrates the Prevent ive Mode l of A C T U s e . Us ing key constructs from the H B M , as well as soc iobehav ioura l var iables identified in past research to be assoc ia ted with preventive health behaviour, the Prevent ive Mode l of A C T U s e expla ins A C T use within the context of preventing a recurrence of d i sease . Prev ious research using the H B M has invest igated such health behaviour as flu vaccinat ion (Rundal l & Whee ler , 1979), preventive dental behaviour (Chen & Land , 2002), breast sel f -examinat ion (Champion & Miller, 1996; Champ ion , 1991), mammography screen ing (Clarke, Lovegrove, Wi l l iams, & Macphe rson , 2000; Ho lm, Frank, & Curt in, 1999), genet ic screen ing (Becker , Kaback , Rosens tock , & Ruth, 1975) and smok ing cessa t ion (Weinberger, G r e e n e , Maml in , & al . , 1981). To date, this research has focussed on individuals who are not ill but who wish to avoid injury or d i sease . Kirscht (1983) acknowledged that preventive health behaviour is not limited to individuals who are wel l , but is a lso undertaken by those exper ienc ing s i ckness . In this study, w o m e n who have been previously d iagnosed and treated for breast cance r are the subjects of interest. Within this context, preventive health behaviour is not directed towards an initial d iagnos is of breast cancer but is instead used in the prevent ion of a  57 recurrence of breast cancer . Fea r of recurrence has been reported to play a signif icant role in the emot ional d is t ress and uncertainty exper ienced by breast cancer survivors (Northouse, 1981; Pe lus i , 1997; Wains tock , 1991). S u c h fear may motivate w o m e n to seek treatment alternatives that may increase the s u c c e s s of convent ional cancer therapies and prevent a recurrence of breast cancer . In this sense , A C T s are used preventively to avoid d i sease . T h e ou tcome construct, Commitment to ACTs, represents women 's preventive use of A C T s within the context of breast cancer recurrence and is def ined as the degree of effort and expense one is will ing to extend in using A C T s . Whi le the majority of past relevant research has examined behaviour d e e m e d by the b iomedical community to be ef f icacious in reducing or identifying the threat of d i sease , lay health pract ices, such as the use of A C T s , are important to study as they provide insight into the popular health beliefs held by the genera l public (Kirscht, 1983). In the Prevent ive Mode l , Commitment to ACTs is hypothes ized to be a direct c o n s e q u e n c e of three key health beliefs, women 's perceived control over recurrence, their prior history of A C T use, and the soc ia l support they received related to A C T s . T h e health beliefs include: (1) Perceived Risk of Breast Cancer Recurrence, (2) Perceived Efficacy of ACTs, and (3) Perceived Barriers to ACT Use. T h e s e beliefs are ana logous to the H B M constructs of perce ived susceptibi l i ty, perceived benefits, and perceived barriers, respect ively. T h e H B M construct, perce ived severity, has been omitted from the model b e c a u s e it is a s s u m e d that all w o m e n in the study will perceive a recurrence of breast cancer to be a ser ious health threat. T h e i r re levance of severity in mode ls of preventive breast health behaviour has a lso been suppor ted in the theoret ical and empir ical literature (Clark, Hill, R a s s a b y , Whi te , & Hirst, 1991; J a n z & Becke r , 1984; S h e e r a n & A b r a h a m , 1995; St i l lman, 1977). Perceived Risk of Breast Cancer Recurrence is def ined as the degree to which one feels suscept ib le to a recurrence of breast cancer . A variety of beliefs have been used in prevent ion research to measu re percept ions of susceptibi l i ty, including perce ived l ikel ihood of carrying the T a y - S a c h s gene (Becker et a l . , 1975), perce ived vulnerabil ity for recurrent infect ions secondary to cyst ic f ibrosis (Abbott, Dodd , & W e b b , 1996), and perceived susceptibi l i ty to the s ide effects of hyper tension (heart d i sease , stroke, and kidney d isease) (Kirscht & Rosens tock , 1977). In research that has examined women 's breast health pract ices (i.e., breast sel f -examinat ion [BSE] and mammography utilization), perceived susceptibi l i ty has been measu red by the subject ive percept ion of breast cancer risk (Ca lnan & Rutter, 1986; Champ ion & Miller, 1996; C h a m p i o n , 1999; H y m a n , Baker , Ephra im, Moade l , & Phil ip, 1994; St i l lman, 1977). Posi t ive assoc ia t ions between women 's percept ion of susceptibi l i ty and both B S E practice and mammography screen ing have been reported (Champion , 1991; Hal lal , 1982; Stein, Fox, Murata , & Mor isky, 1992; St i l lman, 1977). T h e s e assoc ia t ions suggest that w o m e n who perceive themse lves to be at high risk for breast cancer are more likely to engage in preventive health pract ices than 58 w o m e n who perceive themse lves to be at low risk. Extending these f indings to the Prevent ive Mode l of A C T U s e , it is theor ized that w o m e n who perceive their risk of recurrence to be high are more likely to commit to A C T s in the hope of increasing their c h a n c e s of a cancer- f ree survival than w o m e n who perceive themse lves to be at relatively low risk. Signi f icant assoc ia t ions between perceived benefits of and barriers to preventive health behaviour and cance r screen ing have a lso been identified (Burak & Meyer , 1997; Fulton et al . , 1991; H y m a n et al . , 1994; Rut ledge, 1987). In three studies of women 's B S E pract ices, bel iefs about the perce ived benefits of B S E were found to be predictive of preventive health behaviour (Ca lnan & Rutter, 1986; Hal lal , 1982; Rut ledge, 1987). W o m e n who cons idered B S E to be effective in the early detect ion of breast cancer were found to be more likely to engage in B S E than w o m e n who did not bel ieve B S E to be benefic ial . Mammography screen ing studies a lso have revealed negat ive assoc ia t ions between beliefs about perceived barriers to mammography and compl iance with screening (Hyman et al . , 1994; Stein et al . , 1992). In a study that examined enrol lment in a breast cancer prevention trial, non-part icipants were found to be more conce rned about perce ived barriers to participation (e.g., effects of tamoxi fen, receiv ing a p lacebo) than w o m e n enrol led in the trial (Yeomans-K inney et al . , 1995). S imi lar f indings in relation to the inf luence of perceived benefits and barriers on the enactment of preventive health behaviour have been reported within the A C T cance r literature (Cass i le th et al . , 1984; M.Mil ler et al . , 1998; Ya tes , 1991). In one study, nearly 6 0 % of cancer patients using A C T s held the belief that their treatments would effect a remiss ion or prevent metastat ic growth (Cass i le th et al . , 1984). Ke lner and We l lman (1997a) reported that healthy users of A C T s perce ived few barriers to their use of alternative treatments. T h e s e f indings lend support to the inclusion of perceived benefits and barriers within the Prevent ive Mode l of A C T U s e . In this mode l , Perceived Efficacy of ACTs is def ined as the degree of conf idence one has in the ability of A C T s to prevent a recurrence of breast cancer . Perceived Barriers to ACT Use are def ined as the negative deterrents assoc ia ted with using A C T s . Together , it is hypothes ized that w o m e n who hold posit ive beliefs about the ef fect iveness of A C T s in preventing a recurrence of breast cancer and perceive few barriers to access ing A C T s will demonst ra te greater commitment to A C T s than w o m e n to whom these types of therapies are bel ieved to be ineffective or inaccess ib le . In response to past cri t icisms of the H B M that have decr ied the lack of considerat ion of such constructs as control and self-eff icacy (King, 1983; Lauver, 1992; Rosens tock et al. , 1988; S h e e r a n & A b r a h a m , 1995), Perceived Control over Recurrence is included as a construct within the Prevent ive Mode l . Def ined as the degree of control one has over the prevent ion of a recurrence of breast cancer , Perceived Control over Recurrence is hypothes ized to posit ively inf luence Commitment to ACTs. W o m e n who bel ieve that they have s o m e control over a 59 recurrence of breast cancer are more likely to take preventive act ion and commit to us ing A C T s than w o m e n who bel ieve that they have limited control over their future prognosis . Suppor t for this hypothesis has been provided within both the preventive health literature and previous A C T research (Abbott et a l . , 1996; Ba lneaves et al . , 1999; Furnham & Bhagrath, 1993; Furnham & Smi th , 1988; Hal la l , 1982). For example , in Hal lal 's (1982) study of breast health pract ices, w o m e n who performed B S E were found to be less likely to have a locus of control that w a s dependent on powerful others than w o m e n who fai led to practice B S E . Similar ly, individuals who used homeopath ic remedies reported greater perceived control over their health than individuals receiving only convent ional medica l care (Furnham & Bhagrath, 1993). Both these studies sugges t that individuals who participate in preventive health behaviour accept greater responsibi l i ty for their health and perceive themse lves as playing an active role in their health care. Despi te being equivocal ly conceptua l ized within the H B M , researchers have found soc iodemograph ic character ist ics to be significantly assoc ia ted with preventive health behaviour (Kirscht, 1983; S h e e r a n & A b r a h a m , 1995). In particular, educat ion and income have been posit ively assoc ia ted with such preventive health behaviour as immunizat ions (Cummings , Jette, & Brock, 1979), genet ic screen ing (Becker et al . , 1975), prenatal care (Stout, 1997), breast cancer screen ing (Champion & Miller, 1996; Fink, Shap i ro , & Roester , 1972; T h o m a s , Fox, Leake , & Roe tzhe im, 1996), and A C T use (Ba lneaves et al . , 1999; Cass i le th et al . , 1984; Downer et a l . , 1994; Lerner & Kennedy , 1992; M. Miller et a l . , 1998; Ya tes et al . , 1993). In addit ion to soc ioeconomic factors, age has been negatively correlated with both breast health behaviour (Champ ion , 1994; Rut ledge, 1987; Y e o m a n s - K i n n e y et al . , 1995) and A C T use in cancer populat ions (Crocetti et al . , 1998; Downer et al . , 1994; M. Mil ler et a l . , 1998; Ya tes et a l . , 1993). A l though the inclusion of ethnicity and immigration history in the Prevent ive Mode l would have been informative, there was a lack of diversity in the study samp le to ensure sufficient variability in these constructs. Ove r 8 9 % of the respondents reported their ethnicity to be C a u c a s i a n , C a n a d i a n , or "nothing in part icular" . 1 6 In addit ion, more sophist icated and speci f ic data (i.e., country of birth, number of years living in C a n a d a , first language spoken) would have been required to determine the effect of acculturation on A C T use. Whi le the majority of past research has directly assoc ia ted soc iodemograph ic factors to preventive health behaviour, there has been s o m e suggest ion that age, educat ion, and income may indirectly inf luence health behaviour through their effects on health bel iefs (Sheeran & A b r a h a m , 1995; J a n z & Becker , 1984). For example , in Champ ion ' s (1984, 1994) studies on 1 6 The only feasible statistical comparison of A C T use across ethnic groups would have required ethnicity to be recoded as a binary variable (i.e., Caucasian/Canadian and other ethnic group). Comparing A C T use based on being Caucasian or not, however, does not have any substantive support in the literature. 60 B S E and mammography compl iance, age w a s found to be inversely correlated with women 's perce ived susceptibi l i ty to breast cancer . A g e a lso has been negatively assoc ia ted with perce ived eff icacy of preventive pract ices, including the use of A C T s (Nakazono , Dav idson , & A n d e r s e n , 1997; Y a t e s et al . , 1993). Signif icant assoc ia t ions have been identified between income and beliefs about perceived barriers and control (Stein et al . , 1992; Y a t e s et al . , 1993), and between educat ion and beliefs about perce ived eff icacy of health behaviour (Nakazono et al . , 1997). T h e s e relat ionships suggest that the di f ferences found ac ross age cohorts and soc ia l c l a s s e s in relation to preventive health pract ices may reflect the mediat ing inf luences of health bel iefs on the per formance of health behaviour. Drawing from previous research that highlights the indirect relat ionships among soco iodemograph ic var iables and preventive health behaviour, the fol lowing relat ionships are p roposed within the Prevent ive Mode l of A C T U s e . Foremost , it is theor ized that Age is inversely related to Perceived Risk of Breast Cancer Recurrence, Perceived Efficacy of ACTs, and Perceived Control over Breast Cancer Recurrence. Younger w o m e n are hypothes ized to perce ive themse lves a s having a higher risk of breast cancer recurrence, to perce ive A C T s a s more ef f icacious, and to perceive themse lves as having greater control over breast cance r recurrence. In turn, younger w o m e n are postulated to be more commit ted to using A C T s . Second ly , Income is indirectly assoc ia ted with Commitment to ACTs through its effects on Perceived Barriers to ACT Use and Perceived Control over Breast Cancer Recurrence. W o m e n with higher soc ioeconomic status are predicted to confront few deterrents to using A C T s and to have a c c e s s to resources that increase their s e n s e of control over their health. Last ly, Education is p roposed to positively inf luence Perceived Efficacy of ACTs and Perceived Control over Breast Cancer Recurrence. W o m e n with higher educat ional attainment are hypothes ized to have greater knowledge of the potential benefits of A C T s and to have greater a c c e s s to health and informational resources that increase their s e n s e of control over recurrence of breast cancer . In addit ion to the relat ionships among the soc iodemograph ic var iab les and health bel iefs, Age, Income, and Education are al lowed to covary within the mode l . S o m e theorists have further sugges ted that preventive health behaviour is inf luenced by past exper iences with prevention activities (Sheeran & Ab raham, 1995). Whi le few H B M studies have inc luded previous health behaviour as a study construct (some that have include C u m m i n g s et a l . , 1979; Fajardo, Sa in t -Germa in , M e a k e m , R o s e , & Hi l lman, 1992; Fulton et al . , 1991), an assoc ia t ion between past preventive health behaviour and utilization of preventive health serv ices has been noted in the literature. For example , in Fulton et al. 's (1991) study of mammography util ization, women ' s past history of breast screen ing behaviour predicted mammography screen ing. Prev ious use of A C T s , prior to the d iagnos is of cancer , has been posit ively assoc ia ted with the use of A C T s following cancer d iagnos is (Crocett i et al . , 1998; M. 61 Mil ler et a l . , 1998). S imi lar to the assoc ia t ions among soc iodemograph ic var iab les and preventive health pract ices, the inf luence of previous use on behaviour has been sugges ted to be a c o n s e q u e n c e of indirect effects on health beliefs, particularly perce ived eff icacy (Sheeran & A b r a h a m , 1995). In the Prevent ive Mode l of A C T U s e , Previous Use of ACTs is indirectly related to Commitment to ACTs through a positive effect on Perceived Efficacy of ACTs. W o m e n who have used A C T s prior to their breast cancer d iagnos is are hypothes ized to be more confident in the ou tcomes of A C T s , thus increasing their commitment to A C T s . It is further theor ized that previous exper ience with A C T s negatively inf luences how w o m e n perceive barriers to using A C T s . A s the effect of previous use of A C T s on an individual 's commitment to A C T s cannot be exp la ined entirely through its inf luence on perceived eff icacy and barriers, a direct posit ive relat ionship is a lso proposed. Th is relat ionship captures other factors potentially assoc ia ted with previous use, including cultural traditions and habitual health behaviour. Previous ACT use is a lso permitted to covary with the soc iodemograph ic var iab les. Seve ra l cues to act ions have been identified in previous research as being potential tr iggers of women ' s preventive health behaviour, including such factors as soc ia l support, phys ic ians ' recommendat ions , and health insurance (the latter being particularly relevant in the United States) (Burak & Meyer , 1997; C h a m p i o n , 1991; Fulton et al . , 1991; Ste in et al . , 1992). The effect of soc ia l inf luence on health behaviour has been of particular interest within the A C T literature, with numerous studies reporting encouragement from significant others as being an important motivator in the dec is ion to use A C T s (Crocett i et a l . , 1998; Ke lner & W e l l m a n , 1997a; Truant, 1998; Ya tes et al. , 1993). B a s e d on this preliminary ev idence, the construct Encouragement to Use ACTs was included in the Prevent ive Mode l of A C T U s e . Def ined as the soc ia l support rece ived from significant others regarding the use of A C T s , Encouragement to Use ACTs is theor ized to have both direct and indirect effects on Commitment to ACTs. Foremost , receiv ing support from signif icant others regarding A C T s is hypothes ized to increase the perce ived eff icacy of A C T s and to reduce perceived barriers to using A C T s , result ing in a heightened commitment to A C T s . Second ly , Encouragement to Use ACTs is postulated to have a direct effect on Commitment to ACTs, reflecting the inf luence of soc ia l desirabil i ty on preventive health behaviour. Encouragement to Use ACTs and Previous Use of ACTs were permitted to covary with each other and with the soc iodemograph ic factors in the model . The Ameliorative Model of Alternative/Complementary Therapy Use T h e second theoretical model to be examined is the Amel iorat ive Mode l of A C T U s e . Th is mode l incorporates key constructs of the H B M and related soc iobehav ioura l var iab les and f ocusses on women ' s use of A C T s within the context of exper iencing symptom dist ress as a c o n s e q u e n c e of convent ional cancer treatments. The Amel iorat ive Mode l is most c losely a l igned to previous H B M research that has examined the impact of health bel iefs on sick role 62 behaviour, which has been previously def ined as any activity undertaken by an individual who is socia l ly recogn ized as being ill, for the purposes of becoming well (Kas l & C o b b , 1966). Often, s ick role behaviour occurs fol lowing the d iagnos is of a d i sease or the prescript ion of convent ional medica l treatment. In this context, the Amel iorat ive Mode l exam ines how w o m e n with breast cancer respond to medical ly recogn ized s ide effects of convent ional cance r therapies (e.g., fat igue, lymphadema) through the use of A C T s . A l though the majority of research that has util ized the H B M to examine s ick role behaviour has f ocussed on individuals' compl iance with convent ional treatment recommendat ions (Abbott et al . , 1996; Becker , 1974; Becke r & Ma iman , 1975; Kirscht & Rosens tock , 1977; Pasket t , Carter, C h u , & Whi te , 1990), the Amel iorat ive Mode l of A C T U s e takes a less pejorative s tance and examines the sel f -care activities of w o m e n who have chosen to use A C T s as a m e a n s of managing their symptom distress. Pas t research sugges ts that symptom dist ress is exper ienced by a cons iderab le number of breast cancer survivors during and fol lowing their convent ional cancer treatment (Cimpr ich & Ron is , 2001 ; Eh lke , 1988; Hosk ins , 1997; Knobf, C impr ich , & Ron is , 2002; Love, Leventhal , Easter l ing, & Nerenz , 1989; Wains tock , 1991). Symp toms most prevalent within the breast cance r populat ion include fat igue, nausea , vomit ing, pain, and s leep d is turbances (Ehlke, 1988; Hosk ins , 1997; Lindley, V a s a , Sawyer , & Winer , 1998; Love et al . , 1989, Oberst , 1991). Emot ional d is t ress has a lso been reported as being a ser ious consequence of the d iagnos is and treatment of breast cancer (Mast, Lindley, V a s a , Sawyer , & Winer , 1998; Wains tock , 1991). T h e s e symptoms and dist ress are p roposed within the Amel iorat ive Mode l to be motivating factors behind women 's commitment to A C T s . T h e Amel iorat ive Mode l of A C T U s e and its related constructs are il lustrated in Figure 2. Whi le similar to the Prevent ive Mode l of A C T U s e with regards to the inclusion of health beliefs and soc iobehav ioura l var iables, severa l key di f ferences exist between the models . T h e fol lowing d iscuss ion f o c u s s e s on these di f ferences and provides empir ical ev idence of the speci f ied causa l relat ionships. Foremost , the outcome construct within the Amel iorat ive Mode l , Commitment to ACTs, is hypothes ized to be representat ive of women 's ameliorat ive use of A C T s within the context of symptom dis t ress secondary to convent ional cancer treatment. Def ined as the degree of effort and expense one is will ing to extend in using A C T s , this construct reflects women ' s sick role behaviour fol lowing the d iagnos is and treatment of breast cancer . T o capture the impact of symptom distress on w o m e n with breast cancer 's commitment to A C T s , the central construct in the Amel iorat ive Mode l is the health belief, Perceived Symptom Distress. Th is construct, def ined as the degree of discomfort felt in relation to the symptoms 63 64 being exper ienced (McCork le & Y o u n g , 1978), is ana logous to the H B M concept of Perceived Severity. Prev ious research has sugges ted that perceived severity is a key predictor of s ick role behaviour, more so than beliefs about perceived susceptibi l i ty (Sheeran & A b r a h a m , 1995; B e c k e r & Ma iman , 1975; Kirscht, Becker , & Eve land , 1976). The importance of the perce ived severity construct within mode ls of s ick role behaviour has been partially exp la ined by individuals' ability to conceptua l ize the c o n s e q u e n c e s of i l lness when they are exper ienc ing symptoms (Janz & Becker , 1984). Pe rce i ved susceptibi l i ty may be of lesser impor tance within mode ls of s ick role behaviour because percept ions of risk become superf luous when individuals are confronted with symptoms or a d i sease . In other words, individuals who cons ider themse lves to be sick and have been d iagnosed with an i l lness may no longer perceive themse lves to be at risk. G iven these conjectures, the perce ived susceptibi l i ty construct has been omitted from the Amel iorat ive Mode l of A C T Use . Ev idence for the potential relationship between Perceived Symptom Distress and Commitment to ACTs has been provided within the A C T cancer literature (Crocett i et al. , 1998; M. Mil ler et a l . , 1998; Ya tes , 1991). For example , in one study of A C T use by breast cancer patients, phys ica l and psycho log ica l d is t ress was ci ted a s the main reason for us ing A C T s (Crocett i et al . , 1998). Recent intervention research on the effects of gu ided imagery on women 's adjustment during convent ional breast cancer treatment is a lso suggest ive of a posit ive relat ionship between perce ived symptom distress and commitment to A C T s (Ko lcaba & Fox, 1999). A s such , it is theor ized within the Amel iorat ive Mode l of A C T U s e that w o m e n who exper ience heightened percept ions of symptom distress are more likely to commit to A C T s than w o m e n exper ienc ing few or no adverse effects from convent ional breast cancer treatment. S imi lar to the Prevent ive Mode l , Commitment to ACTs within the Amel iorat ive Mode l is hypothes ized to be a consequence of two other health beliefs, Perceived Efficacy of ACTs and Perceived Barriers to Using ACTs. However , in the Amel iorat ive Mode l of A C T use, Perceived Efficacy of ACTs is def ined as the degree of conf idence one has in the ability of A C T s to add ress the adverse s ide effects of convent ional treatment. T h e construct, Perceived Barriers to ACT Use, is def ined as the deterrents of A C T use. The re levance of these constructs within mode ls of s ick role behaviour has been il lustrated in a meta-ana lys is conduc ted by J a n z and Becke r (Janz & Becker , 1984), who found that perceived benefits and barriers were signif icant predictors of s ick role behaviour in the majority of past research (Janz & Becker , 1984). R e s e a r c h on the use of A C T s within the general populat ion has also revealed signif icant assoc ia t ions among the Perceived Efficacy of ACTs and Perceived Barriers constructs and the use of A C T s in the management of such symptoms as anxiety, headaches , and dermatit is (Furnham & Forey, 1994; Furnham & Smith, 1988). G iven this ev idence, it is theor ized that w o m e n who cons ider A C T s to be effective in managing the s ide effects of convent ional cancer 65 treatment and who perceive few barriers to A C T use are more likely to commit to A C T s than w o m e n who do not hold these beliefs. R e s e a r c h e r s have a lso impl icated perceived control as being influential in dec is ion making related to sick role behaviour, including the use of A C T s (Furnham & Bhagrath , 1993; Fu rnham & Forey, 1994; Kirscht & Rosens tock , 1977). Within the Amel iorat ive Mode l of A C T U s e , the control construct, Perceived Control over Adverse Effects is def ined as the degree of control one has over the adverse effects of convent ional cancer treatment. It is postulated that w o m e n who bel ieve in their ability to control the s ide effects of cancer therapies and their subsequen t symptom dist ress are more commit ted users of A C T s than w o m e n who do not cons ider symptom management to be within their control. L ike the Prevent ive Mode l of A C T use, health beliefs are postulated to mediate the effect of the soc iobehav ioura l constructs of Age, Education, and Previous Use of ACTs on women 's commitment to A C T s . B a s e d on past breast cancer research, younger w o m e n are hypothes ized to exper ience greater symptom distress than older w o m e n , hence motivating them to seek out alternative forms of symptom management (Love et al. , 1989; P o z o et al . , 1992; Wains tock , 1991). Y o u n g e r w o m e n are also hypothes ized to perceive A C T s as being more ef f icacious and to perceive greater control over the adverse effects of convent ional cancer treatment. T h e remaining relat ionships among Income, Education, Previous Use of ACTs, and the H B M constructs are identical to those proposed within the Prevent ive Mode l , with the except ion