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Chinese families in supportive care Cruikshank, Sheila Ann 1990

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CHINESE FAMILIES IN SUPPORTIVE CARE By SHEILA ANN CRUIKSHANK B.Sc.N., The University of B r i t i s h Columbia, 1982 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE STUDIES (The School of Nursing) We accept t h i s thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA September, 1990 © Sheila Ann Cruikshank, 1990 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of The University of British Columbia Vancouver, Canada DE-6 (2/88) ABSTRACT Th i s study was designed to e x p l o r e how Chinese f a m i l i e s managed the care of an a d u l t member with advanced cancer both i n home and h o s p i t a l s e t t i n g s , t o i d e n t i f y f a c t o r s t h a t a f f e c t e d care management, to examine the i n f l u e n c e of c u l t u r a l b e l i e f s and p r a c t i c e s on c a r e g i v i n g , and to examine the p r e f e r e n c e f o r l o c a t i o n of care, from the p e r s p e c t i v e of one f a m i l y member. The method used i n conducting t h i s study was the grounded theory approach of q u a l i t a t i v e r e s e a r c h . Data were c o l l e c t e d through a s e r i e s of i n t e r v i e w s with s i x Chinese informants ( f i v e a d u l t c h i l d r e n and one spouse). The i n i t i a l i n t e r v i e w s were guided by the r e s e a r c h q u e s t i o n s . Constant comparative a n a l y s i s was employed throughout data c o l l e c t i o n t o permit a n a l y t i c m a t e r i a l t o guide and focus the process of c o n s t r u c t i n g the core s o c i a l p r o c e s s . The informants' degree of e t h n i c i d e n t i t y was measured u s i n g the E t h n i c I d e n t i t y Q u e s t i o n n a i r e to f u r t h e r v a l i d a t e the r e s e a r c h e r ' s o b s e r v a t i o n s p e r t a i n i n g to c u l t u r a l o r i e n t a t i o n . The r e s u l t s i n d i c a t e d t h a t Chinese f a m i l i e s managed the care of an a d u l t member wit h advanced cancer through the b a l a n c i n g p r o c e s s . T h i s process, used when p a t i e n t s were i n h o s p i t a l and home, c h a r a c t e r i z e d the s t r u g g l e the f a m i l i e s e xperienced i n managing everchanging c a r e g i v i n g demands and everyday f a m i l y demands. B a l a n c i n g was comprised of f o u r i n t e r r e l a t e d management s t r a t e g i e s : gauging, a n t i c i p a t i n g , s h a r i n g the load, and r e s o u r c i n g . I t was concluded t h a t the process i s not c u l t u r a l l y - b o u n d although a c t i v i t i e s of t r y i n g out and p a t t e r n s of h e l p - s e e k i n g were thought t o be c u l t u r a l l y based. F a c t o r s which were found t o i n f l u e n c e the b a l a n c i n g process were past experiences and the p a t i e n t s ' and fa m i l y members' s t y l e or p r e v i o u s p a t t e r n s of coping. C u l t u r a l b e l i e f s i n f l u e n c e d f a m i l y members' a c t i o n s and the reasons g i v e n f o r t h e i r a c t i o n s . The r e s u l t s a l s o i n d i c a t e d t h a t Chinese f a m i l i e s p r e f e r r e d care at home t o care i n the h o s p i t a l . However, care at home was contingent on fou r f a c t o r s : a v a i l a b i l i t y and a b i l i t y of c a r e g i v e r s , f a m i l y support, i n f o r m a t i o n from p h y s i c i a n , and p a t i e n t s ' p h y s i c a l c o n d i t i o n and symptom management. The h o s p i t a l s e t t i n g was i d e n t i f i e d as the p l a c e where the i l l f a m i l y would d i e . In terms of n u r s i n g p r a c t i c e , the r e s u l t s support the need f o r nurses t o be f a m i l y - f o c u s e d and support the a c t i o n s of f a m i l y members as the f a m i l i e s manage the ca r e . The r e s u l t s a l s o suggest nurses t o ex p l o r e t h e i r own b e l i e f s as w e l l as b e l i e f s of p a t i e n t s and f a m i l i e s t o ensure s e n s i t i v i t y i s shown t o d i f f e r e n c e s . The f i n d i n g s r e i n f o r c e the importance o f edu c a t i n g f a m i l i e s , as w e l l as other h e a l t h care p r o f e s s i o n a l s , about n u r s i n g ' s r o l e i n p r o v i d i n g care, e s p e c i a l l y i n the community. With r e g a r d t o n u r s i n g r e s e a r c h , the r e s u l t s r e i n f o r c e the need t o conduct f a m i l y u n i t r e s e a r c h and f u r t h e r e x p l o r e the v a l i d i t y o f the b a l a n c i n g process with more Chinese f a m i l i e s and other e t h n i c groups. i v TABLE OF CONTENTS PAGE A b s t r a c t i i Table o f Contents i v L i s t o f Tables v i i L i s t of F i g u r e s v i i i Acknowledgements i x CHAPTER ONE: INTRODUCTION 1 Background t o the Problem 1 Statement of Problem 3 Purpose and Research Questions 4 Assumption 4 D e f i n i t i o n o f Terms 5 CHAPTER TWO: REVIEW OF THE LITERATURE ...6 Family 6 L o c a t i o n of Care 9 C u l t u r a l I n f l u e n c e s 11 Summary 15 CHAPTER THREE: METHODS 17 Study Design 17 Data C o l l e c t i o n 17 Instrumentation 20 Sample S e l e c t i o n 24 C r i t e r i a f o r S e l e c t i o n 24 Recruitment of Informants 26 Data A n a l y s i s 28 R e l i a b i l i t y and V a l i d i t y 33 E t h i c a l C o n s i d e r a t i o n s 35 Summary 36 CHAPTER FOUR: RESULTS 38 C h a r a c t e r i s t i c s of Informants and t h e i r F a m i l i e s 38 C h a r a c t e r i s t i c s of Informants 38 C h a r a c t e r i s t i c s o f P a t i e n t s 41 C h a r a c t e r i s t i c s o f Informants' F a m i l i e s 43 Conceptual A n a l y s i s : B a l a n c i n g Process 4 6 B a l a n c i n g 4 6 Family Demands 51 C a r e g i v i n g Demands 52 V CHAPTER FOUR: (continued) Management S t r a t e g i e s o f B a l a n c i n g 54 Gauging 55 A n t i c i p a t i n g 59 Sharing the Load ..63 Resourcing 72 Summary 80 S t y l e and Past Experiences 83 C u l t u r a l I n f l u e n c e s 87 E t h n i c I d e n t i t y Q u e s t i o n n a i r e 87 Inf l u e n c e o f Degree o f E t h n i c I d e n t i t y 96 Inf l u e n c e o f C u l t u r a l l y Based B e l i e f s and P r a c t i c e s 96 L o c a t i o n of Care 101 Home as P r e f e r r e d Choice 101 F a c t o r s I n f l u e n c i n g Home Care Experience 105 F a c t o r s I n f l u e n c i n g D e c i s i o n t o H o s p i t a l i z e 108 Dying i n H o s p i t a l I l l P a r t i c i p a t i o n i n Study I l l Summary 112 CHAPTER FIVE: DISCUSSION AND IMPLICATIONS 114 Ba l a n c i n g Process 114 Family Demands 115 C a r e g i v i n g Demands 116 The S t r u g g l e o f the B a l a n c i n g Process 117 Management S t r a t e g i e s o f B a l a n c i n g 120 C u l t u r a l l y S p e c i f i c A c t i v i t i e s 124 Inf l u e n c e s of Past Experiences and S t y l e 129 C u l t u r a l I n f l u e n c e s 130 L o c a t i o n o f Care 135 Pre f e r e n c e f o r Care at Home 135 F a c t o r s I n f l u e n c i n g Home Care Experience 137 F a c t o r s I n f l u e n c i n g D e c i s i o n t o H o s p i t a l i z e 139 Dying i n H o s p i t a l 140 Nursing I m p l i c a t i o n s .141 I m p l i c a t i o n s f o r Nursing P r a c t i c e 142 Supporting the B a l a n c i n g Process 142 Focus i n g on the Family 145 Understanding C u l t u r a l D i f f e r e n c e s 147 Pref e r e n c e i n L o c a t i o n of Care 150 I m p l i c a t i o n s f o r Nursing Research 151 v i CHAPTER FIVE: (continued) L i m i t a t i o n s and Strengths 154 CHAPTER SIX: SUMMARY AND CONCLUSIONS 158 References 164 Appendices 172 Appendix A: Chinese Immigration t o B r i t i s h Columbia... 173 Appendix B: S t a t i s t i c s o f Major E t h n i c Group P o p u l a t i o n of B r i t i s h Columbia 174 Appendix C: Interview G u i d e l i n e s 175 Appendix D: Revised Interview G u i d e l i n e s 178 Appendix E: E t h n i c I d e n t i t y Q u e s t i o n n a i r e 181 Appendix F: Consent t o Study 182 Appendix G: L e t t e r of E x p l a n a t i o n 184 Appendix H: Demographic Data Sheet 185 Appendix I: EIQ R e s u l t s of S i n g l e Item Scores 187 Appendix J : E t h i c a l Approval 188 LIST OF TABLES TABLE 1. D e c i s i o n - T r a i l of Conceptual Analysis 2. Characteristics of Informants 3. C h a r a c t e r i s t i c s of Patients 4. Characteristics of Informants' Families 5. Ethnic Identity Questionnaire Results LIST OF FIGURES v i i i FIGURE PAGE 1. B a l a n c i n g Process 47 2. Overlap of C a r e g i v i n g Demands and Family Demands 48 3. E t h n i c I d e n t i t y Continuum 8 9 4. Comparison of Years i n Canada, L o c a t i o n of 95 O r i g i n and Informants' EIQ Scores ix ACKNOWLEDGEMENTS I would l i k e to thank the members of my thesis committee, Dr. Betty Davies (chairperson) and Dr. Heather Clarke for the guidance they have given me i n t h i s research process. I thank Dr. Betty Davies for the i n s p i r a t i o n she has given, and for her patience and u n f a i l i n g optimism. I also thank Judy Lynam for the extra e f f o r t needed i n meeting ti g h t deadlines. A special thanks goes to the individuals who assisted i n r e c r u i t i n g informants for t h i s project, e s p e c i a l l y the Home Care nurses i n Vancouver Health Department and Chris Salton. I would l i k e to express my gratitude to the six informants for sharing t h e i r families' experience with me and for making a remarkable contribution to my understanding of the Chinese culture. There are many colleagues and friends who supported some part of t h i s process. I thank my co-workers for t h e i r support and patience while I completed t h i s project. I would also l i k e to thank P h y l l i s Hunt who was always there to l i s t e n when I needed someone. F i n a l l y , I would l i k e to thank my husband for his continual encouragement, support, and f a i t h i n me to succeed. Without him, t h i s project would not have been possible. 1 Chapter One INTRODUCTION Background t o the Problem The e t h n i c composition of h e a l t h care consumers i n Canada.has become i n c r e a s i n g l y d i v e r s i f i e d over the past years, w i t h many immigrants coming from South East A s i a (/Anderson, 1986) . Since the changes i n the N a t i o n a l Immigration p o l i c i e s i n the 1970's, which allowed many new a r r i v a l s from Hong Kong, China, and Taiwan (Appendix A), the Chinese community has grown. A c c o r d i n g to the 1987 Greater Vancouver Regional D i s t r i c t S t a t i s t i c s , the Chinese p o p u l a t i o n i s the second major e t h n i c group i n B r i t i s h Columbia a f t e r Germans (Appendix B). H e a l t h care p r o f e s s i o n a l s i n the lower mainland have noted i n c r e a s i n g numbers of Chinese i n d i v i d u a l s w i t h cancer are b e i n g cared f o r i n t h e i r agencies. While i t i s known t h a t cancer i s the second l e a d i n g cause of death i n B r i t i s h Columbia ( D i v i s i o n of V i t a l S t a t i s t i c s , 1987), no data s p e c i f i c t o B r i t i s h Columbia are a v a i l a b l e on the i n c i d e n c e of cancer or the number of c a n c e r - r e l a t e d deaths w i t h i n the Chinese p o p u l a t i o n ( E p i d e m i o l o g i s t , BCCA, p e r s o n a l communication, June 15, 1989). The f i n d i n g s of a recent e p i d e m i o l o g i c a l study, however, r e v e a l e d a s i g n i f i c a n t l y h i g h e r number*of cancer deaths i n the immigrant Chinese p o p u l a t i o n when comparing i t t o Canadian-born Chinese (Wang, Ramcharan & Love, 1989). D i s c u s s i o n s with h e a l t h care p r o f e s s i o n a l s who are 2 p r o v i d i n g s u p p o r t i v e care t o Chinese i n d i v i d u a l s and t h e i r f a m i l i e s have expressed f e e l i n g s of being i l l - p r e p a r e d t o care f o r t h i s e t h n i c group: they f e e l they l a c k understanding of c u l t u r a l l y s p e c i f i c care t o a s s i s t Chinese p a t i e n t s and t h e i r f a m i l i e s manage c a n c e r - r e l a t e d care and death ( I . Goldstone, St. Paul's H o s p i t a l ; A. Le BLanc, Vancouver General H o s p i t a l ; L. Rose, Vancouver H e a l t h Department; B. Ross, B r i t i s h Columbia Cancer Agency, p e r s o n a l communications, March t o J u l y , 1989). Some nurses have v o i c e d d i s s a t i s f a c t i o n with the approach o f c a r i n g f o r Chinese i n d i v i d u a l s w i t h cancer and t h e i r f a m i l i e s i n the same manner as Caucasians e x p e r i e n c i n g cancer f o r they f e e l t h e r e are fundamental d i f f e r e n c e s between the western h e a l t h b e l i e f s emphasized i n education programs and i n work environments and the non-western b e l i e f s o f the Chinese f a m i l i e s (Home Care Nurses, p e r s o n a l communication, 1988). L i t t l e i s known about the i n f l u e n c e o f c u l t u r e on how f a m i l i e s manage the care o f a member wit h cancer i n the home and h o s p i t a l , i f , i n f a c t , c u l t u r a l l y s p e c i f i c care requirements e x i s t . While s e v e r a l authors suggested t h a t c u l t u r a l background can make a d i f f e r e n c e i n an i n d i v i d u a l ' s or a f a m i l y ' s response t o i l l n e s s i n c l u d i n g cancer (Albon & Ames, 1989; Kleinman, E i s e n b e r g & Good, 1978; S p i n e t t a , 1984; Whiteside, 1983), t o date most r e s e a r c h d e a l i n g w i t h cancer c a r e g i v i n g has not addressed c u l t u r a l d i f f e r e n c e s or i n f l u e n c e s . The s t r e s s f u l nature of the cancer experience f o r Caucasian f a m i l i e s has been w e l l documented i n both l a y and h e a l t h care l i t e r a t u r e . Research i n d i c a t e s t h a t f a m i l y members are 3 r e p e a t e d l y i d e n t i f i e d as the primary source of p s y c h o s o c i a l support f o r the cancer p a t i e n t (Giacquinta, 1977; Davies, Reimer, & Martens, i n p r e s s ; Parsons, 1977; S t o l a r , 1982) and th a t they bear the g r e a t e s t r e s p o n s i b i l i t y f o r day-to-day care f o r as long as p o s s i b l e up t o , i f f e a s i b l e , the p o i n t o f death (Googe & V a r r i c h i o , 1981). I t i s u n c e r t a i n i f the same i s t r u e f o r f a m i l i e s o f other e t h n i c groups, such as Chinese. With i n c r e a s i n g demand on h o s p i t a l resources f o r " a c u t e l y i l l " p a t i e n t s , f a m i l y members of dying p a t i e n t s are p r e s s u r e d by h e a l t h care p r o f e s s i o n a l s and h o s p i t a l a d m i n i s t r a t o r s t o take t h e i r l o v e d one home, d e s p i t e the burdens t h i s p l a c e s on f a m i l y members. Family members are a l s o b e i n g expected t o assume more r e s p o n s i b i l i t y f o r care of t h e i r i l l l o v e d one whi l e i n h o s p i t a l and at home due t o the shortage o f n u r s i n g p e r s o n n e l , t i g h t e r h e a l t h care spending and h i g h e r n u r s e / p a t i e n t r a t i o s . Yet nurses l a c k knowledge of the process f a m i l i e s use t o manage the care of a member wit h advanced cancer both i n the home and h o s p i t a l s e t t i n g s ; i t i s even l e s s understood i n the case o f d i f f e r e n t e t h n i c groups, such as Chinese f a m i l i e s . In order t o p r o v i d e c u l t u r a l l y r e l e v a n t n u r s i n g care t o a s s i s t Chinese f a m i l i e s i n managing the care o f a f a m i l y member wit h advanced cancer i n the home and h o s p i t a l , r e s e a r c h i s r e q u i r e d t o g a i n an understanding of t h e i r experience from t h e i r p e r s p e c t i v e . Statement of Problem The g e n e r a l problem addressed i n t h i s study was the l a c k of i n f o r m a t i o n about Chinese f a m i l i e s ' c a r e g i v i n g , i n 4 the home and hospital, when an adult family member has advanced cancer and the influence of c u l t u r a l b e l i e f s and practices on care management. The increasing growth of Chinese health care consumers demands the acq u i s i t i o n of t h i s knowledge by nurses to enable them to a s s i s t Chinese families to manage care at home and i n ho s p i t a l . Purpose The purpose of t h i s study was twofold: to explore and describe the management process engaged i n by Chinese families i n caring for an adult member with advanced cancer i n the home and hospital, and to examine the influence of culture on caregiving, from the perspective of one family member. The s p e c i f i c questions that directed t h i s study were as follows: 1. How do Chinese families manage the care of an adult member with advanced cancer i n the home and the hospital? 2. What factors affect how Chinese families manage care of an adult member with advanced cancer i n the home and the hospital? 3. What i s the influence of c u l t u r a l b e l i e f s and practices on how Chinese families manage care of an adult member with advanced cancer i n the home and the hospital? 4. How do Chinese determine preference i n location of care when caring for an adult family member with advanced cancer? Assumption For the purpose of t h i s study the following assumption was made: there are variations among Chinese families i n t h e i r o r i e n t a t i o n t o t h e i r c u l t u r e . D e f i n i t i o n of Terms For t h i s study, the f o l l o w i n g d e f i n i t i o n s of major terms were used: Advanced Cancer: cancer f o r which i t i s no longer m e d i c a l l y a p p r o p r i a t e to t r e a t the p a t i e n t w i t h the i n t e n t t o cure the d i s e a s e . Chinese: those who c a l l themselves Chinese i r r e s p e c t i v e of the l e n g t h of time i n Canada and p l a c e of b i r t h ( i e : Mainland China, Hong Kong, Taiwan or Canada). Family: s o c i a l context w i t h i n which one a d u l t member has advanced cancer. Immediate f a m i l y members i n c l u d e d the p a t i e n t , spouse (where a p p l i c a b l e ) , and c h i l d r e n who a s s i s t e d i n some way w i t h the p a t i e n t ' s c a r e . Extended f a m i l y members i n c l u d e d the r e l a t i v e s both on the p a t e r n a l and maternal s i d e s of the f a m i l y , as w e l l as spouses and c h i l d r e n of the immediate c h i l d r e n . Management Proc e s s : process through which the f a m i l y e i t h e r gave care or supported the care b e i n g g i v e n t o an a d u l t member wit h advanced cancer. 6 Chapter Two REVIEW OF THE LITERATURE P e r t i n e n t t h e o r e t i c a l p e r s p e c t i v e s and r e s e a r c h s t u d i e s were examined i n order t o p l a c e the proposed study w i t h i n the context of c u r r e n t knowledge. The l i t e r a t u r e reviewed i s o r g a n i z e d a c c o r d i n g t o t h r e e c a t e g o r i e s : 1. f a m i l y 2. l o c a t i o n of care 3. c u l t u r a l i n f l u e n c e s Family Most r e s e a r c h e r s s t u d y i n g the f a m i l y c a r i n g f o r an a d u l t member wit h cancer have e i t h e r examined the impact of the d i a g n o s i s on the f a m i l y (Johnson, 1988; Krant & Johnstone, 1978; Northouse, 1984; Rose, 1976; Thorne, 1983; T i b l i e r , 1989; Welch, 1975-1979, 1981) or have i d e n t i f i e d f a m i l i e s ' needs i n c a r e g i v i n g . Many of the s t u d i e s which focused on c a r e g i v e r s ' needs examined the p r a c t i c a l aspects of c a r i n g f o r the cancer p a t i e n t , p a r t i c u l a r l y i n the home and hospice type s e t t i n g s . These needs, owing t o t h e i r p r a c t i c a l nature, were r e l a t i v e l y e a s i l y i d e n t i f i e d and documented (Googe & V a r r i c h i o , 1981; Grobe, Ahmann & I l s t r u p , 1982; Rose, 1976). Many of these needs were s k i l l - r e l a t e d , r e q u i r i n g e f f e c t i v e communication, i n f o r m a t i o n , and e d u c a t i o n a l i n t e r v e n t i o n s by h e a l t h care p r o f e s s i o n a l s . Examples of s k i l l - r e l a t e d needs are p a i n management, wound and s k i n care, d i e t a r y c o n t r o l , ambulation, bowel and b l a d d e r management, and comfort c a r e . Some authors d e s c r i b e d p s y c h o s o c i a l needs of f a m i l y c a r e g i v e r s i n terms of 7 f i n a n c i a l and emotional s t r a i n encountered when r o l e s change and as p a t i e n t s can no longer manage t h e i r own care (Blank, C l a r k , Longman & Atwood, 1989; W e l l i s c h , Landverk, Guidera, Pasnau and Fawzy, 1983). M e t h o d o l o g i c a l weaknesses, however, p l a c e the f i n d i n g s of these s t u d i e s i n doubt. For example, many s t u d i e s were completed r e t r o s p e c t i v e l y , data were c o l l e c t e d from c h a r t a u d i t s , and i n f o r m a t i o n about complex emotions was gathered d u r i n g one b r i e f p e r i o d of time. As w e l l , some s t u d i e s l a c k e d adequate sample s i z e and w e l l -developed measurement t o o l s . The f i n d i n g s of a p r o s p e c t i v e study i n which c a r e g i v i n g demands were i d e n t i f i e d , had some s i m i l a r i t i e s t o the r e s u l t s d e s c r i b e d above i n terms of l i s t i n g the demands a s s o c i a t e d w i t h c a r e g i v i n g such as managing p h y s i c a l care of p a t i e n t s and performing treatment regimens (Stetz, 1987). However, t h i s study expanded on the f i n d i n g s of other s t u d i e s by i d e n t i f y i n g a d d i t i o n a l c a r e g i v i n g demands such as s t a n d i n g by, a n t i c i p a t i n g the f u t u r e , constant v i g i l a n c e , and managing the household and f i n a n c e s . These d i f f e r e n c e s may be a t t r i b u t a b l e t o the f a c t t h a t the f i n d i n g s were based on f a m i l y members' d e s c r i p t i o n s of t h e i r needs r a t h e r than r e f l e c t i v e of a response to a prepared l i s t . Some s t u d i e s have focused on f a m i l y and spouses' needs i n a g e n e r a l h o s p i t a l s e t t i n g (Hampe, 1975; O'Brien, 1983; Wright and Dyck, 1984). Two needs were i d e n t i f i e d i n a l l t h r e e s t u d i e s : 1) the f a m i l y members' need f o r i n f o r m a t i o n and 2) t h e i r need to be assured of the p a t i e n t ' s comfort and c a r e . Subjects i n O'Brien's study a l s o wanted t o f e e l t h a t 8 t h e r e was hope and to have que s t i o n s answered h o n e s t l y . F i n d i n g s r e p o r t e d by Lewindowski & Jones (1988) concur although methodological weaknesses l i m i t the v a l i d i t y of t h e i r f i n d i n g s . None of the s t u d i e s , however, examined what f a m i l y members' d i d to manage care i n the h o s p i t a l s e t t i n g . Few s t u d i e s have examined f a m i l i e s ' management of care of t h e i r f a m i l y member with advanced cancer. A recent grounded theory study i n v e s t i g a t e d what Caucasian p a t i e n t s and spouses do on t h e i r own b e h a l f and what resources they use t o manage the care of a member w i t h advanced cancer at home (Williams, 1988). I n t e r n a l and e x t e r n a l r e s o u r c e s were i d e n t i f i e d which enabled the f a m i l i e s t o manage at home. I n t e r n a l resources i n c l u d e d f a i t h , p o s i t i v e a t t i t u d e and keeping busy. F r i e n d s as w e l l as p r o f e s s i o n a l s served as e x t e r n a l p h y s i c a l resources f o r i n f o r m a t i o n r e l a t e d t o the d i s e a s e . An important i n t e r p e r s o n a l resource c e n t r e d around t a l k i n g w i t h others and m a i n t a i n i n g a good r e l a t i o n s h i p with the p a t i e n t . Of p a r t i c u l a r i n t e r e s t i n W i l l i a m s ' (1988) study was the concept of work. The r e s e a r c h e r i d e n t i f i e d t h a t both p a t i e n t s and spouses engaged i n s e v e r a l types of work to manage the s i t u a t i o n of advanced cancer at home. Spouses worked at hoping, s u r v i v i n g , p r e s e r v i n g , t a k i n g stock and h e l p i n g . The concept of work as i t a p p l i e d t o the management of c h r o n i c i l l n e s s was supported by other authors. S t r a u s s , Corbin, Fagerhaugh, G l a s e r , Maines, Suczek & Wiener (1984) d i s c u s s e d v a r i o u s types of work performed by f a m i l i e s i n the home and d u r i n g h o s p i t a l i z a t i o n . Work t h a t o c c u r r e d at home 9 i n c l u d e d management of c r i s e s , symptoms, time and regimens. During h o s p i t a l i z a t i o n , work i n c l u d e d c l i n i c a l s a f e t y work, comfort work, and p s y c h o l o g i c a l work. Through i n t e r v i e w s with s i x t y couples (predominantly Caucasian), C o r b i n & Strauss (1988) i d e n t i f i e d t h r e e types of work i n managing care at home: everyday work, i l l n e s s work and b i o g r a p h i c a l work. S i m i l a r i t i e s e x i s t e d between these f i n d i n g s and W i l l i a m s ' f i n d i n g s w i t h regard t o the types of work i d e n t i f i e d . While W i l l i a m s ' s m a l l sample s i z e p r e c l u d e d any g e n e r a l i z a b l e r e s u l t s , both s t u d i e s enhance understanding of the experience of f a m i l i e s d e a l i n g w i t h a member wit h advanced cancer at home. Since the r e s u l t s of both of these s t u d i e s were based on i n t e r v i e w s with predominantly Caucasian s u b j e c t s , i t remains u n c l e a r whether f a m i l i e s from other e t h n i c groups experience s i m i l a r work. While some s t u d i e s have examined what f a m i l i e s do to manage care (mainly at home), none have d e s c r i b e d the management process engaged i n by the f a m i l i e s . Furthermore, no s t u d i e s have been conducted w i t h Chinese c a r e g i v e r s . L o c a t i o n of Care The l i t e r a t u r e has i n d i c a t e d a growing awareness of the need f o r o p t i o n s i n l o c a t i o n of care f o r p a t i e n t s w i t h t e r m i n a l i l l n e s s e s and t h e i r f a m i l i e s (Blank et a l , 1989; B r e s c i a , Sadof, & Barstow, 1984; Grobe et a l , 1982; Hays, 1986; Hinton, 1979; Krant, 1978; Mount, 1976; Parkes, 1985; Rose, 1976). Yet, most s t u d i e s have focused on a p p r a i s i n g the approach to care v i s - a - v i s the l o c a t i o n of c a r e . In p a r t i c u l a r , l o c a t i o n of care has been a v a r i a b l e i n s t u d i e s 10 which have focused on the hospice approach i n meeting the need of t e r m i n a l l y i l l p a t i e n t s and t h e i r f a m i l i e s (Blues & Zerwekh, 1984; Garner, 1976; Krant, 1978; Mount, 1976, 1978; Osterweis & Champagne, 1979). Authors have compared ho s p i c e care t o care i n the home and ge n e r a l h o s p i t a l s e t t i n g ( B r e s c i a , Sadof & Barstow, 1984; Cameron & Parkes, 1983; Carey & Posovac, 1979; Gray, A d l e r , Fleming, B r e s c i a , 1988; Hinton, 1979; Parkes and Parkes, 1984; Parkes, 1985). S e v e r a l authors have w r i t t e n about the neg a t i v e consequences of t e r m i n a l care i n an acute g e n e r a l h o s p i t a l (Krant, 1978; Mount, 1976; Osterweis & Champagne, 1979; Parkes, 1985). Krant (1978) remarked t h a t " t h i s s e t t i n g i s u p s e t t i n g , i f not i n i m i c a l , t o the needs of the p a t i e n t and f a m i l y " (p.547). In c o n t r a s t , Hinton (1979) d i s p r o v e d c o n t e n t i o n s t h a t acute g e n e r a l h o s p i t a l s cannot g i v e good care t o the dy i n g . His f i n d i n g s confirmed t h a t acute g e n e r a l h o s p i t a l s have n e i t h e r overwhelming advantages or disadvantages when compared with a separate h o s p i c e care f a c i l i t y . No other r e p o r t s were l o c a t e d o f e m p i r i c a l r e s e a r c h which s t u d i e d q u a l i t y o f l i f e or f a m i l y responses t o t e r m i n a l care i n a gen e r a l h o s p i t a l . The s u i t a b i l i t y o f p a r t i c u l a r l o c a t i o n s and p r e f e r e n c e shown toward v a r i o u s l o c a t i o n s o f care by p a t i e n t s and f a m i l i e s have been v i r t u a l l y unexplored. Some l i t e r a t u r e has p o r t r a y e d t e r m i n a l care i n the home as the ch o i c e l o c a t i o n f o r p a t i e n t s and f a m i l i e s (Malkin, 1976; Stedeford, 1986). These statements were supported by f i n d i n g s of a recent study w i t h f a m i l i e s c a r i n g f o r a f a m i l y member with advanced cancer at home and i n h o s p i t a l (Davies et a l , i n p r e s s ) . P a t i e n t s and f a m i l i e s c l e a r l y a r t i c u l a t e d t h a t they p r e f e r r e d care at home over care i n the h o s p i t a l because home care f a c i l i t a t e d "being there"/ normalcy, r e l a t i o n s h i p s , c o n t r o l , r e c i p r o c i t y , and comfort. Subjects p o i n t e d out, however, t h a t these b e n e f i t s were only experienced when t h e r e were w i l l i n g and able c a r e g i v e r s , when the p a t i e n t was not too i l l , when the home c o u l d be adapted t o meet the p a t i e n t ' s needs, and when home support s e r v i c e s were p r o v i d e d t o the extent r e q u i r e d . When these c o n d i t i o n s were not met, p a r t i c u l a r l y i f th e r e were no w i l l i n g and able c a r e g i v e r s and the p a t i e n t was immobilized and/or i n c o n t i n e n t , f a m i l y members p e r c e i v e d a l o s s o f c o n t r o l and saw h o s p i t a l i z a t i o n as the only c h o i c e . Rose (197 6) has suggested t h a t care at home may not be f o r a l l f a m i l i e s because of the profound emotional burden and s t r e s s f a m i l y members experience when c a r i n g f o r a member with cancer at home. Northouse (1984) a l s o suggested t h a t not a l l f a m i l i e s f e e l t h a t they have enough knowledge or emotional stamina t o care f o r dying f a m i l y members i n the home. There have been no s t u d i e s r e g a r d i n g the p r e f e r e n c e o f Chinese f a m i l i e s f o r home or h o s p i t a l care o f t h e i r t e r m i n a l l y f a m i l y members t o date. Furthermore, a s i d e from Davies and c o l l e a g u e s ' study ( i n p r e s s ) , the p r e f e r e n c e f o r l o c a t i o n of care has been v i r t u a l l y unexplored. C u l t u r a l I n f l u e n c e s Chinese f a m i l y c a r e g i v i n g has r e c e i v e d l i t t l e a t t e n t i o n i n the l i t e r a t u r e although Chinese h e a l t h p r a c t i c e s have been the subject of several authors. Some have concentrated on examining Chinese health practices within a Chinese context, studying the Chinese, for example, i n China, Hong Kong, and Singapore (Ho, Lun, & Ng, 1984; Kleinman, Kunstadter, Alexander, & Gale, 1975; Koo, 1984; Rosenthal, 1981). Others have focused on t r a d i t i o n a l Chinese medicine (Lui & Lui, 1980; Porkert, 1984; Wang, 1983). While such studies are invaluable i n helping health care professionals understand general Chinese concepts of health and i l l n e s s and Chinese health practice, t h e i r relevance has not been explored for s p e c i f i c situations such as the cancer experience. Spinetta (1984) has i n s i s t e d that i t i s necessary to understand the cancer experience i n i t s c u l t u r a l context because "differences i n c u l t u r a l background can make a major difference i n responses of individuals and families to the cancer experience" (p. 2330). The t h e o r e t i c a l l y based l i t e r a t u r e offered abundant opinion to support Spinetta's view. Several authors emphasized that the influence of s o c i a l and c u l t u r a l factors on the i l l n e s s experience of individuals and familes can resul t i n differences i n meaning given to the situ a t i o n , patterns of behaviour used to seek help and cure, decision-making patterns, and reasons behind actions (Ablon & Ames, 1989; Campbell & Chang, 1973; Chrisman, 1983; Kleinman, Eisenberg, Good, 1978; Leninger, 1977; Masi, 1988; Rolland, 1987; Varricchio, 1987; Whiteside, 1983). They have suggested that the influence of such factors may re s u l t i n differences i n meaning given to the sit u a t i o n , i n patterns of behaviour 13 used t o seek h e l p and cure, i n decision-making p a t t e r n s , and i n reasons behind a c t i o n s . Other authors suggested t h a t c u l t u r a l b e l i e f s and p r a c t i c e s may r e s u l t i n d i f f e r e n c e s i n s t r u c t u r e o f the f a m i l y , the f a m i l y members' r e s p o n s i b i l i t i e s f o r care of the i l l member, and d i f f e r e n c e s i n the r o l e o f the extended f a m i l y members i n the p r o v i s i o n o f t h i s care (Rolland, 1987). C u l t u r a l i n f l u e n c e s i n r e l a t i o n t o f a m i l y coping have a l s o been addressed i n the l i t e r a t u r e . Authors suggested t h a t c u l t u r a l p a t t e r n s w i t h i n f a m i l i e s p l a y a s i g n i f i c a n t r o l e i n determining how f a m i l i e s cope w i t h s i t u a t i o n s l i k e cancer (JAblon & /Ames, 1989; Chrisman, 1983; Ro l l a n d , 1987). Reseach based f i n d i n g s which v a l i d a t e the t h e o r e t i c a l views i n terms of c a r e g i v i n g and/or the cancer experience are scant . One study examined immigrant Chinese f a m i l i e s c a r i n g f o r a c h r o n i c a l l y i l l c h i l d i n the home. /Anderson and Chung (1982) found t h a t Chinese f a m i l i e s ' customs f o r c a r i n g f o r t h e i r c h i l d r e n o f t e n were incongruent with western h e a l t h care p r o f e s s i o n a l s ' views which o f t e n l e d to non-compliance and i n e f f e c t i v e treatment. A recent survey examined the i n f l u e n c e o f c u l t u r a l p r a c t i c e s and r e l i g i o u s b e l i e f s of nine e t h n i c groups on t h e i r behaviour a s s o c i a t e d w i t h i l l n e s s , d y i ng and death (Saint E l i z a b e t h V i s i t i n g Nurses' A s s o c i a t i o n o f Ont a r i o , 1988). Although no d e s c r i p t i o n was give n o f how the survey was conducted, i t was r e p o r t e d t h a t Chinese i n d i v i d u a l s , e s p e c i a l l y the e l d e r l y , c o n s i d e r e d t o p i c s such as h o s p i t a l i z a t i o n , w i l l s , and death, taboo and r a r e l y d i s c u s s e d them. No s t u d i e s were l o c a t e d which 14 i n v e s t i g a t e d Chinese f a m i l i e s as c a r e g i v e r s of a member wit h cancer. While the l i t e r a t u r e reviewed above has attempted t o d e s c r i b e c u l t u r a l i n f l u e n c e s on the i l l n e s s experience i n gen e r a l terms, some r e s e a r c h e r s have examined c u l t u r a l i n f l u e n c e s i n terms of degree of e t h n i c i d e n t i t y and/or a c c u l t u r a t i o n . E t h n i c i d e n t i t y r e f e r s t o "the way i n which persons c a t e g o r i z e themselves i n r e f e r e n c e t o others and attempts t o a s s o c i a t e or d i s a s s o c i a t e themselves with persons whose c u l t u r e i s s i m i l a r " (Clarke, 1985, p. 315). Okano (197 6) examined how Japanese Americans view mental h e a l t h concepts, l o o k i n g at the r e l a t i o n s h i p between e t h n i c i d e n t i t y and mental h e a l t h a t t i t u d e s . The f i n d i n g s emphasize the importance of r e c o g n i z i n g the d i v e r s i t y w i t h i n e t h n i c groups. High l e v e l s o f e t h n i c i d e n t i t y appeared t o be r e l a t e d t o a low l e v e l o f awareness of s o c i a l s e r v i c e r e s o u r c e s . C l a r k e (1985) and Burke, Maloney, Pothaar, and Baumgart (1987) s t u d i e d the i n f l u e n c e o f degree of e t h n i c i d e n t i t y on h e a l t h - r e l a t e d behaviour a s s o c i a t e d w i t h c h i l d b e a r i n g p r a c t i c e s with N a t i v e Indians. These r e s e a r c h e r s viewed e t h n i c i d e n t i t y along a continuum extending from attachment t o non-attachment t o one's e t h n i c r o o t s . Embedded i n t h i s continuum i s the n o t i o n o f openness or r e c e p t i v e n e s s t o ideas, ways, b e l i e f s , and va l u e s o f other e t h n i c groups. At the h i g h l y a t t a c h e d end of the continuum i s e t h n o c e n t r i c i t y . At the l o o s e l y a t t a c h e d or d i s a s s o c i a t e d end of the continuum i s a l a c k o f i d e n t i t y with one's e t h n i c group and an openness t o t h a t o f other e t h n i c groups. Although i t was not p o s s i b l e t o p r e d i c t any i n d i v i d u a l ' s h e a l t h b e l i e f s based on e t h n i c background, i t was p o s s i b l e t o a n t i c i p a t e t h a t an i n d i v i d u a l w i t h a c l o s e r attachment t o h i s / h e r e t h n i c r o o t s w i l l perhaps have been exposed t o and adheres t o the b e l i e f s o f h i s or her group (Chrisman, 1983). Other r e s e a r c h e r s have a l s o examined degree of e t h n i c i t y , but i n terms of a c c u l t u r a t i o n . A c c u l t u r a t i o n encompasses the accommodation, changes and a d a p t a t i o n w i t h i n a person or group t h a t are p r e c i p i t a t e d by cont a c t between two d i f f e r e n t c u l t u r a l groups (Berry, 1983) . Berry, Trimble, and Olmedo (1986) suggested t h a t u n l e s s the r e s e a r c h e r can gauge the a c c u l t u r a t i v e i n f l u e n c e and i t s impact o f the i n d i v i d u a l , he/she may draw i n a p p r o p r i a t e c o n c l u s i o n s about the source o f v a r i a t i o n i n behaviour. F u r t h e r r e s e a r c h i s needed t o understand the i n f l u e n c e o f degree o f e t h n i c i t y on f a m i l y members' behaviour, knowledge and s k i l l a c q u i s i t i o n s i n c e no e t h n i c group i s homogenous e s p e c i a l l y w i t h m i g r a t i o n . In summary, r e s e a r c h e x p l o r i n g the Chinese f a m i l i e s ' c a r e g i v i n g experience i s l a c k i n g . Much of what has been w r i t t e n about the i n f l u e n c e o f c u l t u r e on h e a l t h r e l a t e d behaviour i s t h e o r e t i c a l l y based. The i n f l u e n c e of c u l t u r a l b e l i e f s and degree of e t h n i c i d e n t i t y on how Chinese f a m i l i e s manage the care of a member wit h cancer i n the home and h o s p i t a l has been unexplored t o date. Summary Although tre n d s i n h e a l t h care p o i n t t o the i n c r e a s i n g involvement of the f a m i l y i n c a r i n g f o r the i l l f a m i l y member, l i t t l e a t t e n t i o n has been d i r e c t e d toward examining how f a m i l i e s manage the care of a member wit h cancer. No s t u d i e s have been conducted with Chinese f a m i l i e s c a r i n g f o r a t e r m i n a l l y i l l f a m i l y member. Furthermore, r e s e a r c h i s l a c k i n g i n terms of understanding where f a m i l i e s p r e f e r t o care f o r t h e i r f a m i l y member. Research based f i n d i n g s have r e v e a l e d a p r e f e r e n c e by Caucasian f a m i l i e s t o care at home under p a r t i c u l a r circumstances but the same understanding o f Chinese f a m i l i e s ' p r e f e r e n c e s i s yet to be i n v e s t i g a t e d . The l i t e r a t u r e p r o v i d e d h i n t s r e g a r d i n g p o t e n t i a l c u l t u r a l i n f l u e n c e s on h e a l t h and i l l n e s s behaviour but no e m p i r i c a l l y sound r e s e a r c h p e r t a i n i n g t o cancer, c a r e g i v i n g , and c u l t u r a l i n f l u e n c e s has been r e p o r t e d . T h i s study has been designed t o address these gaps' by i n v e s t i g a t i n g how Chinese f a m i l i e s manage care o f a f a m i l y member wit h advanced cancer i n the home and h o s p i t a l (from one f a m i l y member's p e r s p e c t i v e ) , by i d e n t i f y i n g f a c t o r s which a f f e c t care management, by examining the i n f l u e n c e o f c u l t u r a l b e l i e f s and p r a c t i c e s on care management, and by examining how Chinese f a m i l i e s determine p r e f e r e n c e o f l o c a t i o n of c a r e . Chapter Three METHODS Study Design The choice of method should be determined by the r e s e a r c h q u e s t i o n (Goodwin & Goodwin, 1984; Morse, 1986; R e i c h a r d t & Cook, 197 9). T h i s study i n v o l v e d a r e s e a r c h q u e s t i o n t h a t sought to answer "what i s going on and how" and i n v o l v e d s u b j e c t i v e experiences of i n d i v i d u a l s w i t h i n Chinese f a m i l i e s ; t h e r e f o r e , the q u a l i t a t i v e approach was thought to be a p p r o p r i a t e . The q u a l i t a t i v e approach deemed t o meet the purposes of t h i s study best was G l a s e r and S t r a u s s ' (1967) grounded theory, which employs an i n d u c t i v e , from-the-ground-up approach u s i n g everyday behaviour or o r g a n i z a t i o n p a t t e r n s t o generate theory. T h i s approach i s e s p e c i a l l y u s e f u l where p r i o r d e s c r i p t i v e r e s e a r c h does not e x i s t f o r a p a r t i c u l a r problem ( A r t i n i a n , 1986). The purpose of t h i s approach i s t o i d e n t i f y the core v a r i a b l e or the s o c i a l process t h a t d e s c r i b e s the c h a r a c t e r i s t i c s of a p a r t i c u l a r group ( A r t i n i a n , 1986; Stern, 1980). To q u a n t i f y the r e s e a r c h e r ' s q u a l i t a t i v e f i n d i n g s r e g a r d i n g c u l t u r a l o r i e n t a t i o n of the informants, a q u a n t i t a t i v e t o o l was used i n c o n j u c t i o n with the grounded theory approach. Data C o l l e c t i o n Both q u a l i t a t i v e and q u a n t i t a t i v e methods of data c o l l e c t i o n were used. The p o t e n t i a l b e n e f i t s of t h i s d ual approach are t h a t each method can b u i l d on the other and add d i f f e r e n t types of i n f o r m a t i o n . G l a s e r & Strauss (1967) argue t h a t t r i a n g u l a t i o n i n r e s e a r c h design 18 allows f o r the c o l l e c t i o n o f d i f f e r e n t forms of data on the same s u b j e c t s , which i s u s e f u l f o r both v e r i f i c a t i o n and g e n e r a t i o n o f theory (p.18). Q u a n t i t a t i v e data were c o l l e c t e d through use of a q u e s t i o n n a i r e designed t o measure the informants' degree o f attachment t o t h e i r Chinese e t h n i c r o o t s or e t h n i c i d e n t i t y (EIQ) (Appendix E ) . Q u a l i t a t i v e methods i n c l u d e d two (where p o s s i b l e ) audio taped i n t e r v i e w s w i t h each informant. Tapes were subsequently t r a n s c r i b e d word f o r word. A l l i n t e r v i e w s and t r a n s c r i p t i o n s were completed by the r e s e a r c h e r . In a d d i t i o n , f i e l d notes (both d e s c r i p t i v e and r e f l e c t i v e ) were recorded at the end of each i n t e r v i e w . From the author's p e r s p e c t i v e , l i t t l e was known about Chinese f a m i l i e s ' acceptance o f being i n t e r v i e w e d as a f a m i l y u n i t about the study's s u b j e c t matter. Therefore, the study was conducted with one f a m i l y member. Three of the f i r s t i n t e r v i e w s with informants were conducted i n the s u b j e c t ' s home, one i n the p a t i e n t ' s home, one i n the h o s p i t a l , and i n an o f f i c e of the l o c a l h e a l t h department. Each f i r s t v i s i t began wi t h the r e s e a r c h e r e x p l a i n i n g the study and answering any f u r t h e r q u e s t i o n s the informant had. The r e s e a r c h e r began by g u i d i n g the d i s c u s s i o n i n an open-ended manner t o permit f l e x i b i l i t y and maximum op p o r t u n i t y f o r c l a r i f i c a t i o n and a m p l i f i c a t i o n by the key informants. Most informants, however, d i s p l a y e d d i s c o m f o r t and expressed u n c e r t a i n t y i n knowing how to respond t o t h i s s t y l e of q u e s t i o n i n g and wanted t o ensure they gave the " c o r r e c t answer". The i n t e r v i e w q u e s t i o n s were used i n a 19 s e m i - s t r u c t u r e d i n t e r v i e w format u n t i l the informant became comfortable and was able t o converse i n a l e s s s t r u c t u r e d manner. The focus of each i n t e r v i e w was the i n d i v i d u a l ' s p e r c e p t i o n of t h e i r f a m i l i e s ' e xperience. Informants completed the EIQ and the demographic data sheet (Appendix H) at the end of the f i r s t i n t e r v i e w , i n the presence of the r e s e a r c h e r . Informants r e q u i r e d minimal c l a r i f i c a t i o n i n completing the demographic data sheet, but needed some c l a r i f i c a t i o n i n completing the EIQ. One informant c i r c l e d both " s l i g h t l y d i s a g r e e " and " s l i g h t l y agree" t o items 12, 13, and 14, s t a t i n g she " f e l t n e u t r a l " about these items. When co n t a c t e d at a l a t e r date t o c l a r i f y , she s e l e c t e d " s l i g h t l y d i s a g r e e " t o a l l of them. Three informants had ques t i o n s about the meaning or i n t e n t i o n of c e r t a i n items. One informant asked her eigh t e e n year o l d daughter t o t r a n s l a t e the items f o r her. A l l but one i n t e r v i e w was conducted alone with the informant t o encourage f r e e d i s c l o s u r e o f data. The one ex c e p t i o n requested t h a t her eigh t e e n year o l d daughter act as an i n t e r p r e t e r d u r i n g the i n t e r v i e w s i n c e she f e l t t h a t , although she.was eager t o p a r t i c i p a t e , she d i d not have an adequate command of the E n g l i s h language t o understand the r e s e a r c h e r and t o e x p l a i n h e r s e l f c l e a r l y . Subsequent i n t e r v i e w s were conducted with t h r e e informants t o ensure the p r o p e r t i e s of the core s o c i a l p rocess was f u l l y d e s c r i b e d and t o v a l i d a t e the r e s e a r c h e r ' s c o n c e p t u a l i z a t i o n . Two p a t i e n t s d i e d b e f o r e a second i n t e r v i e w c o u l d be conducted. One a d u l t daughter agreed t o 20 one i n t e r v i e w only and a f i n a l telephone c a l l , which was used t o c l a r i f y her responses to the EIQ and to v a l i d a t e the key c a t e g o r i e s i d e n t i f i e d i n the core s o c i a l p r o c e s s . Two a d d i t i o n a l i n t e r v i e w s were conducted w i t h one e x c e p t i o n a l l y a r t i c u l a t e informant to enable the r e s e a r c h e r to understand more f u l l y the s o c i a l process t h a t was b e i n g experienced. Instrumentation The EIQ was i n c l u d e d i n the study i n an attempt to q u a n t i f y the informants' degree of e t h n i c i d e n t i t y and to enhance the v a l i d i t y of the r e s e a r c h e r ' s o b s e r v a t i o n s . I t i s a s e l f - r a t i n g s c a l e c o n s i s t i n g of f i f t e e n s i n g l e items. I t was o r i g i n a l l y developed by Okano i n 197 6 to measure the s t r e n g t h of o r i e n t a t i o n toward Japanese c u l t u r a l v a l u e s . The q u e s t i o n n a i r e was r e v i s e d i n 1983 t o make i t r e f e r e n c e s p e c i f i c t o Chinese /Americans. C l a r k e (1985) m o d i f i e d Okano's 1976 EIQ f o r use w i t h West Coast S a l i s h Indians by r e p l a c i n g r e f e r e n c e to "Japanese" with " N a t i v e " . The EIQ was f u r t h e r m o d i f i e d i n 1987 to remove any r e f e r e n c e t o a p a r t i c u l a r e t h n i c group. T h i s g e n e r i c q u e s t i o n n a i r e was then used i n an ethnographic study e x p l o r i n g c h i l d b e a r i n g and c h i l d h e a l t h care i n n o r t h e r n Indians, urban n a t i v e s , urban Euro-Canadians and nurses (Burke, Maloney, Pothaar, Baumgart, 1987). Burke r e p o r t e d the EIQ to have i n t e r n a l c o n s i s t e n c y of .78 (Cronbach's A l p h a ) . T h i s instrument had not been used with a cancer p o p u l a t i o n p r i o r t o i t s use i n t h i s study. F a c t o r a n a l y s i s on the s i n g l e items of the EIQ i d e n t i f i e d two c l u s t e r s of items c l o s e l y l i n k e d t o g e t h e r : s o c i a l r e l a t i o n s , and t r a d i t i o n s / c u s t o m s (Burke et a l , 1987). Items 3, 5, 6, 7, 8, 11, 12 and 14 were grouped under s o c i a l r e l a t i o n s which looked at s o c i a l r e l a t i o n s h i p s i n the e x t e r n a l environment or con t a c t w i t h other c u l t u r a l groups. Items 1, 2, 4, 9 ,10, and 15 were grouped under t r a d i t i o n s / customs which were a s s o c i a t e d with t r a d i t i o n a l v a l u e s and ways of doing t h i n g s . Item 13 d i d not l o a d on e i t h e r f a c t o r .... (Burke et a l , 1987). The i n t e r v i e w guide f o r t h i s study had p r e v i o u s l y been used by Davies and her c o l l e a g u e s (Davies, 1989.) (Appendix C ). The guide was developed from a review of the l i t e r a t u r e and from d i s c u s s i o n s among the members of Davies' r e s e a r c h team based upon t h e i r c o l l e c t i v e c l i n i c a l and r e s e a r c h experience. Content v a l i d i t y was e s t a b l i s h e d by a panel o f two nurse r e s e a r c h e r s , t h r e e nurses and one p h y s i c i a n a l l with c l i n i c a l experience i n p a l l i a t i v e c a r e . For the c u r r e n t study, the i n t e r v i e w guide was p r e t e s t e d w i t h t h r e e Chinese i n d i v i d u a l s t o a p p r a i s e the s u i t a b i l i t y o f the quest i o n s f o r use w i t h the Chinese e t h n i c group. The E t h n i c I d e n t i t y Q u e s t i o n n a i r e (Appendix E ) , the consent (Appendix F ) , and the l e t t e r o f e x p l a n a t i o n (Appendix G) were a l s o reviewed by these i n d i v i d u a l s f o r c l a r i t y and c u l t u r a l s e n s i t i v i t y . The th r e e Chinese i n d i v i d u a l s were: 1. a Chinese f a m i l y member who had r e c e n t l y experienced the death o f her s i s t e r - i n - l a w . She had been i n v o l v e d i n p r o v i d i n g care t o the i l l f a m i l y member; 2. a Chinese s o c i a l worker experienced i n i n t e r v i e w i n g Chinese i n d i v i d u a l s with cancer and t h e i r f a m i l i e s w h ile they are i n h o s p i t a l ; and 22 3. a Chinese f a m i l y member who met the study's c r i t e r i a f o r sample s e l e c t i o n . The r e s e a r c h e r i n t e r v i e w e d the f i r s t i n d i v i d u a l u s i n g the i n t e r v i e w q u e s t i o n s as a guide. At the end of the i n t e r v i e w , l a s t i n g 1-1 1/2 hours, the r e s e a r c h e r asked f o r comments on the c l a r i t y o f the questions, the a p p l i c a b i l i t y and r e l e v a n c y to the Chinese c u l t u r e , and i f any q u e s t i o n should be changed or d e l e t e d . The i n d i v i d u a l assessed the q u e s t i o n s as a p p r o p r i a t e f o r use w i t h Chinese f a m i l i e s and i n d i c a t e d t h a t the questions allowed ample o p p o r t u n i t y t o d i s c u s s the experience. She p r o v i d e d s i m i l a r feedback on the consent and l e t t e r of e x p l a n a t i o n . Her feedback on the E t h n i c I d e n t i t y Q u e s t i o n n a i r e (EIQ) was mixed. While she found most of the items t o be c l e a r ; she was u n c e r t a i n how to answer fo u r items (#1, 4, 9, & 14) because the language was "odd". De s p i t e c o n f u s i o n about some of the language, she recommended the EIQ be used. The Chinese s o c i a l worker pre s e n t e d s e v e r a l suggestions f o r making the q u e s t i o n s more s e n s i t i v e t o c u l t u r a l d i f f e r e n c e s . For example, he suggested t h a t f i r s t g e n e r a t i o n Chinese i n d i v i d u a l s may have d i f f i c u l t y d i s c u s s i n g i s s u e s surrounding dying s i n c e t h i s i s a s e n s i t i v e area. He a l s o suggested t h a t because Chinese i n d i v i d u a l s may not be comfortable d i s p l a y i n g or e x p r e s s i n g f e e l i n g s i t may l i m i t t h e i r w i l l i n g n e s s t o p a r t i c i p a t e or r e s t r i c t the data t h a t c o u l d be c o l l e c t e d . The s o c i a l worker a l s o commented on the l e v e l of a b s t r a c t i o n of some of the q u e s t i o n s and i n d i c a t e d t h a t Chinese i n d i v i d u a l s are o f t e n concrete i n t h e i r t h i n k i n g and thus may not make sense of the q u e s t i o n s . He suggested the use of concrete probes t o a s s i s t them. He a d v i s e d not to ask i f q u e s t i o n s were " o f f e n s i v e " . I f the Chinese person answered yes, the r e s e a r c h e r may l o s e f a c e . Instead, he a d v i s e d t h a t t h i s term "does not allow the person who has a l r e a d y answered the q u e s t i o n s to save f a c e " . Instead, he a d v i s e d the r e s e a r c h e r to ask the s u b j e c t i f t h e r e were any q u e s t i o n s t h a t should be omitted or changed. He a l s o suggested t h a t a q u e s t i o n p e r t a i n i n g t o food be made more e x p l i c i t s i n c e the Chinese view food as very important and the l a s t v a l u e to h o l d onto. He thought i t might be u s e f u l t o c o l l e c t data on the key informants' past experience with the h e a l t h care system because i f they have l i m i t e d or no experience w i t h u s i n g the h e a l t h care system, they may not be aware of what resou r c e s are a v a i l a b l e . Regarding the EIQ, he suggested t h a t the q u e s t i o n n a i r e may not be a p p l i c a b l e to recent immigrants. L a s t l y , when asked i f t h e r e are u s u a l l y s p e c i f i c spokespersons f o r the f a m i l y , he i n d i c a t e d t h a t t h i s custom i s i n f l u e n c e d by l e v e l of e d u c a t i o n . The more the person was educated, the more l i k e l y he/she would speak f o r him or h e r s e l f , otherwise the male - e i t h e r the spouse or the e l d e s t son i s the spokesperson. The i n t e r v i e w q u e s t i o n guide was m o d i f i e d to r e f l e c t these suggestions (Appendix D). The wording of some of the q u e s t i o n s was c l a r i f i e d and more c u l t u r a l l y - s p e c i f i c probes were added. These r e v i s e d q u e s t i o n s were then used with the t h i r d p r e t e s t i n d i v d u a l . The t h i r d p r e t e s t i n d i v i d u a l had no 24 f u r t h e r suggestions f o r change. His only comment was t h a t items f o u r and nine on the EIQ were "odd" and he was u n c e r t a i n o f what was intended. Sample S e l e c t i o n In grounded theory, the r e s e a r c h e r i s concerned w i t h meaning or content and not wit h d i s t r i b u t i o n or frequency. Therefore, the most a p p r o p r i a t e technique i s t h e o r e t i c a l sampling ( F i e l d & Morse, 1985). In t h e o r e t i c a l sampling, c r i t e r i a f o r s e l e c t i o n were based on the informants' a b i l i t y t o g i v e data t h a t were r e p r e s e n t a t i v e o f and c o n t r i b u t e d t o understanding o f the s u b j e c t area. I d e a l l y , informants who were most knowledgeable and r e c e p t i v e were s e l e c t e d i n order t o maximize o p p o r t u n i t i e s t o o b t a i n the most i n s i g h t f u l data p o s s i b l e . The need t o ex p l o r e f u r t h e r , c o n f i r m or r e f u t e the emerging theory a l s o determined the s e l e c t i o n of the sample. Sampling and data c o l l e c t i o n ceased when the data were complete, d i d not have gaps, made sense, and had been confirmed. C r i t e r i a f o r S e l e c t i o n I n i t i a l c r i t e r i a f o r s e l e c t i n g informants were t h a t the informant: 1. was a member of a Chinese f a m i l y with a member who a) had advanced cancer, as d e f i n e d on page e i g h t o f t h i s document. The person w i t h cancer may or may not have been informed o f the d i a g n o s i s , but the informant knew the d i a g n o s i s , b) was a p a t i e n t i n an acute g e n e r a l h o s p i t a l i n a m e t r o p o l i t a n area i n western Canada or was r e c e i v i n g 25 home care through a Home Care Program i n the same area, c) r e s i d e d with h i s / h e r married or common-law spouse. 2. was e i t h e r a spouse or the a d u l t c h i l d of the person w i t h cancer and l i v e d with the p a t i e n t . 3. was judged by the c l i n i c a l p ersonnel and the r e s e a r c h e r not t o be s i g n i f i c a n t l y burdened by p a r t i c i p a t i o n i n the study; t h a t i s , those with severe f a t i g u e or u n r e s o l v e d p s y c h o l o g i c a l i s s u e s were not approached. 4. c o u l d communicate i n E n g l i s h both v e r b a l l y and i n w r i t i n g . 5. c o n s i d e r e d h i m / h e r s e l f Chinese. The s e l e c t i o n process d i d not c o n t r o l f o r the p l a c e of o r i g i n or f o r years s i n c e immigrating t o Canada. As the study progressed, two c r i t e r i a r e q u i r e d m o d i f i c a t i o n i n order t h a t the number of informants e l i g i b l e f o r p a r t i c i p a t i o n might be i n c r e a s e d . C r i t e r i o n #1 b was broadened t o i n c l u d e other acute care g e n e r a l h o s p i t a l s , a cancer agency, and another Home Care agency i n the m e t r o p o l i t a n area i n western Canada. One p a r t i c u l a r s e c t i o n of the m e t r o p o l i t a n area was s e l e c t e d owing t o the h i g h p r o p o r t i o n o f Chinese r e s i d e n t s l i v i n g i n t h i s a r ea. The second c r i t e r i o n was a l s o m o d i f i e d . I t became evi d e n t e a r l y i n the study t h a t t o f i n d informants who l i v e d w ith the p a t i e n t and yet spoke E n g l i s h w e l l enough t o converse was v i r t u a l l y i m p o s s i b l e . Family members who l i v e d t o g e t h e r d i d not speak E n g l i s h w e l l enough t o understand the re s e a r c h e r ' s q u e s t i o n s t o enable the r e s e a r c h e r t o understand them. As w e l l , other a d u l t c h i l d r e n who were v o l u n t e e r i n g f o r the study but they d i d not l i v e with the p a t i e n t . 26 Therefore, informants were selected i f they were a spouse or the adult c h i l d of the person with cancer and were a c t i v e l y involved with the person's care. Recruitment of Informants Recruitment of informants occurred i n two medical units in acute care general hospitals and i n the Home Care D i v i s i o n of a health department i n a metropolitan area of western Canada. The researcher submitted copies of her proposal accompanied by a l e t t e r of introduction to administration i n the hospitals and the research consultant of the health department to seek entry to the agencies. Upon approval, the researcher met with coordinators of nursing s t a f f experienced with the Chinese ethnic group and introduced the study to them. Nurses i d e n t i f i e d p o t e n t i a l informants, and the researcher reviewed the s u i t a b i l i t y of each before the informant was asked to p a r t i c i p a t e . It became obvious early i n the process of recruitment that even though many Chinese individuals could speak some English, t h e i r English was not adequate for them either to understand what the researcher was asking or to conceptualize or a r t i c u l a t e t h e i r family's experience i n a manner necessary for the method selected. S p e c i f i c questions pertaining to fluency of English were asked of the nurses when potential informants were being selected. They were asked to select individuals who were fluent i n English. Individuals who were interested i n p a r t i c i p a t i n g i n the study were given a l e t t e r of explanation (Appendix G) which described the study and the required time commitment. Once 27 the i n d i v i d u a l agreed t o p a r t i c i p a t e , the r e s e a r c h e r c o n t a c t e d the person by telephone or i n person t o set up an appointment t o e x p l a i n the study, t o answer any que s t i o n s , and t o o b t a i n h i s / h e r w r i t t e n consent (Appendix F ) . Recruitment o c c u r r e d over a p e r i o d of seven months, from January t o J u l y , 1990. The r e s e a r c h e r c o n t a c t e d the v a r i o u s agencies e i t h e r weekly or biweekly t o enquire about informants, t o remind them of the need f o r f u r t h e r informants, or t o review the s u i t a b i l i t y of p o t e n t i a l informants. Seven informants i n i t i a l l y were r e c r u i t e d . Only s i x met the c r i t e r i a once they had been i n t e r v i e w e d by the r e s e a r c h e r . The seventh informant d i d not p e r c e i v e the f a m i l y member as t e r m i n a l even though t h i s f a c t was confirmed by the f a m i l y p h y s i c i a n . The informant was i n t e r v i e w e d as scheduled. I n i t i a l l y , i t was a n t i c i p a t e d t h a t t h e r e would be equal numbers of s u b j e c t s from both the home s e t t i n g and the h o s p i t a l . T h i s d i v i s i o n d i d not occur: two s u b j e c t s were r e c r u i t e d from the h o s p i t a l s e t t i n g ; the remaining came from the home s e t t i n g . A l l the persons w i t h cancer had been i n h o s p i t a l at some time, but only two were i n h o s p i t a l at the time o f the i n t e r v i e w s . Numerous Chinese f a m i l i e s d i d not meet the c r i t e r i a e i t h e r because the informants (the spouse or c h i l d r e n ) were not f l u e n t i n E n g l i s h or had not been p a r t i c i p a t i n g i n the care of the p a t i e n t , or the p a t i e n t s d i d not meet the c r i t e r i a as they were s t i l l undergoing a c t i v e treatment f o r cure - f o c u s e d c a r e . Of f i f t e e n f a m i l i e s who d i d meet the 28 c r i t e r i a / e i g h t were unable to p a r t i c i p a t e . Three p a t i e n t s ( a l l males) wanted t h e i r spouse or c h i l d r e n t o p a r t i c i p a t e but these r e f u s e d f o r reasons such as not wanting to be emotional i n f r o n t of the r e s e a r c h e r or l a c k of time because of t h e i r work committments. Three a d u l t c h i l d r e n d e c l i n e d t o p a r t i c i p a t e when t h e i r parent was i n h o s p i t a l , n e a r i n g death, s i n c e they " d i d not want t o t a l k about i t and f e l t too emotional". One other a d u l t c h i l d d e c l i n e d t o p a r t i c i p a t e but gave no p a r t i c u l a r reason. Three other informants met the c r i t e r i a , but the p a t i e n t d i e d b e f o r e t h e r e was an o p p o r t u n i t y to request t h e i r p a r t i c i p a t i o n . Data A n a l y s i s Loading scores were g i v e n t o the f i f t e e n EIQ items, and t o t a l scores were c a l c u l a t e d t o determine degree of e t h n i c i d e n t i t y or attachment t o t h e i r Chinese r o o t s . T o t a l mean scores and standard d e v i a t i o n s were c a l c u l a t e d . I n d i v i d u a l scores were a l s o a s s i g n e d f o r two f a c t o r s ( s o c i a l r e l a t i o n s and t r a d i t i o n s / c u s t o m s ) t o i d e n t i f y s i m i l a r i t i e s and d i f f e r e n c e s among the informants. Mean va l u e s f o r s i n g l e items i d e n t i f i e d the items where g r e a t e r extremes were pr e s e n t . Scores were compared and c o n t r a s t e d t o i d e n t i f y r e l a t i o n s h i p s between the t o t a l scores and the f a c t o r scores f o r each informant. A l l q u a l i t a t i v e data were s u b j e c t e d t o content a n a l y s i s and constant comparative a n a l y s i s as d e s c r i b e d by G l a s e r and Strauss (1967). Content a n a l y s i s was c a r r i e d out t o i d e n t i f y f a c t o r s t h a t i n f l u e n c e d how informants' f a m i l i e s managed the care of the p a t i e n t s and t o i d e n t i f y p r e f e r e n c e f o r l o c a t i o n 29 of care, whether home or h o s p i t a l . Constant comparative a n a l y s i s followed, the techniques suggested by G l a s e r and Strauss (1967) and the stages i d e n t i f i e d by C o r b i n (1986): 1) uncovering the i n i t i a l s u b s t a n t i v e codes, 2) i n t e g r a t i n g and e l a b o r a t i n g on these codes i n t o more a b s t r a c t c a t e g o r i e s , 3) l i n k i n g the c a t e g o r i e s , and 4) d i s c o v e r i n g the core category. In stage one, the a n a l y s i s o f the tape t r a n s c r i p t s began by coding l i n e by l i n e i n order t o ensure a l l p o t e n t i a l u n d e r l y i n g themes were uncovered. These e a r l y i n - v i v o codes d e s c r i b e d s t r a t e g i e s used by the informants' f a m i l i e s i n d e a l i n g with c a r e g i v i n g and everyday l i f e and the emotional impact o f the s i t u a t i o n . Examples of these codes were keeping an eye, watching, b a b y s i t t i n g , t a k i n g t u r n s , f e e l i n g shocked, f e e l i n g h e l p l e s s and l o s s o f c o n t r o l , and g i v i n g r e l i e f . These i n i t i a l codes were i d e n t i f i e d u s i n g the i n t e r v i e w s from an a r t i c u l a t e informant; the words used by the informants o f t e n served as the code. The r e s e a r c h e r o f t e n recorded ideas i n memo form while they were f r e s h , as suggested by G l a s e r and Strauss (1967). In stage two, i n i t i a l i n t e r v i e w data were coded, compared wi t h other data, and a s s i g n e d t o c l u s t e r s or c a t e g o r i e s a c c o r d i n g t o obvious f i t (Stern, 1980). These were r e f i n e d as subsequent i n t e r v i e w s were coded. For example, codes such as watching, keeping an eye, determining s i g n i f i c a n c e , i n v e s t i g a t i n g , monitoring, knowing something i s wrong were c l u s t e r e d under the category gauging. Table 1 o u t l i n e s the d e c i s i o n t r a i l , or the r e s e a r c h e r ' s 30 c o n s o l i d a t i o n of the i n i t i a l codes i n t o more a b s t r a c t c a t e g o r i e s . T h i s process moved the a n a l y s i s to a h i g h e r l e v e l o f t h e o r e t i c a l c o n c e p t u a l i z a t i o n . Stage t h r e e i n v o l v e d l i n k i n g the c a t e g o r i e s . C a t e g o r i e s were compared with one another and with new data i n subsequent i n t e r v i e w s t o d i s c o v e r l i n k s among c a t e g o r i e s . Informants were asked que s t i o n s about each category t o p r o v i d e c l a r i t y and v a l i d i t y t o the l i n k a g e s . The r e s e a r c h e r looked at the r e l a t i o n s h i p s among the c a t e g o r i e s u s i n g the " f a m i l y of C's": causes, contexts, c o n t i n g e n c i e s , consequences, and c o n d i t i o n s (Swanson, 1986, p. 125). Relevant r e s e a r c h and t h e o r e t i c a l l i t e r a t u r e were then examined i n an attempt t o c l a r i f y , amplify, and v a l i d a t e f i n d i n g s about the category p r o p e r t i e s and l i n k a g e s . As category l i n k a g e s were being explored, diagramming of p o s s i b l e r e l a t i o n s h i p s among them was used t o v i s u a l i z e the l o g i c a l flow of i d e a s . The core s o c i a l process emerged through the process of r e d u c t i o n and comparison (Stern, 1980, p. 23), as d i d the four major c a t e g o r i e s which comprise the p r o c e s s . T h i s process marked the t r a n s i t i o n t o stage f o u r . B a l a n c i n g , as i l l u s t r a t e d i n F i g u r e 1, emerged as the s o c i a l process t h a t d e s c r i b e d how Chinese f a m i l i e s manage the care of a f a m i l y member with advanced cancer both i n the home and h o s p i t a l s e t t i n g s . The f o u r major c a t e g o r i e s t h a t make up the B a l a n c i n g process, are: gauging, a n t i c i p a t i n g , s h a r i n g the l o a d and r e s o u r c i n g . TABLE 1 D e c i s i o n - T r a i l o f Conceptual A n a l y s i s Major Category I n i t i a l Category I n i t i a l Codes 1. GAUGING M o n i t o r i n g -watching f o r si g n s -keeping an eye - i n v e s t i g a t i n g -determining s i g n i f i c a n c e -knowing something i s wrong - a p p r a i s i n g resources - a p p r a i s i n g f a m i l y a b i l i t i e s 2. ANTICIPATING 3. SHARING THE LOAD St a y i n g Prepared D i v i d i n g Tasks -being nearby -keeping v i g i l - p r o t e c t i n g - b a b y s i t t i n g - t a k i n g no chances -having t o be near i n case - w a i t i n g f o r unexpected - f a c i n g the f u t u r e - a n t i c i p a t i n g a c t i o n s - t a k i n g t u r n s - s h a r i n g r e s p o n s i b i l i t i e s - s h i f t i n g o b l i g a t i o n s Major Category 32 I n i t i a l Category I n i t i a l Codes H e l p i n g C o o r d i n a t i n g S u s t a i n i n g Family R e l a t i o n s h i p s 4. RESOURCING Help-seeking - j u g g l i n g - b a l a n c i n g the demands - g i v i n g a s s i s t a n c e - t a k i n g care of -doing f o r / w i t h -performing c u l t u r a l r i t u a l s - e a s i n g the l o a d - p u l l i n g t o g e t h e r - o r g a n i z i n g - s u p p o r t i n g - s h a r i n g time t o g e t h e r -conveying concerns - a d v i s i n g -honoring p a t i e n t ' s wishes - o f f e r i n g hope - g i v i n g r e l i e f - s e e k i ng resources - a c c e s s i n g resources -performing treatments - t r y i n g a l t e r n a t i v e s - h e l p i n g R e l i a b i l i t y and V a l i d i t y R e l i a b i l i t y R e l i a b i l i t y , i n q u a l i t a t i v e r e s e a r c h , r e l a t e s t o the c o n s i s t e n c y o f the f i n d i n g s . S a l d e l o w s k i (1986) i n s i s t s t h a t " a u d i t a b i l i t y be the c r i t e r i o n o f r i g o r or merit f o r t h i s methodology" (p. 33). A u d i t a b i l i t y e x i s t s when another r e s e a r c h e r can c l e a r l y f o l l o w the " d e c i s i o n t r a i l " used by the r e s e a r c h e r i n the. study. As the r e s e a r c h e r coded the data, the t h e s i s a d v i s o r r e g u l a r l y checked the emerging codes f o r c o n s i s t e n c y among the data. As a n a l y s i s progressed, the t h e s i s a d v i s o r " a u d i t e d " the r e s e a r c h e r ' s c o n c e p t u a l i z a t i o n to ensure i t r e f l e c t e d the meaning of the data and was c l e a r and a c c u r a t e . The second a d v i s o r a l s o a p p r a i s e d the emerging c o n c e p t u a l i z a t i o n and gave feedback when i t was incomplete or l a c k e d sound l i n k a g e s . The r e s e a r c h e r a l s o sought, as a n a l y s i s progressed, feedback from expert nurse c l i n i c i a n s r e g a r d i n g gaps and u n c l e a r l i n k a g e s w i t h i n the d e c i s i o n -t r a i l . Table 1 p r o v i d e s the r e s e a r c h e r ' s d e c i s i o n - t r a i l f o r reader a u d i t a b i l i t y . V a l i d i t y To address v a l i d i t y , the r e s e a r c h e r used every o p p o r t u n i t y t o v e r i f y the intended meaning with the informants. T h i s process was extremely important i n regard to two informants whose l i n g u i s t i c p a t t e r n s l e f t the data open f o r i n t e r p r e t a t i o n . T h i s p a t t e r n appears i n the f o l l o w i n g e x e r p t : Ms. B: "About t h r e e years ago, f i n d out tumor. F i r s t t h i n k f i n d out she got some tumor i n t h e r e and changed now — two months ago, maybe l i t t l e b i t changed so she very i l l , v e ry hot and she 34 get d i v e r t y t o o . " Through v e r i f i c a t i o n , the r e s e a r c h e r l e a r n e d t h a t the informant was d e s c r i b i n g i n c r e a s i n g t i s s u e hardening, or a s c i t e s r e s u l t i n g from a l i v e r tumor; " d i v e r t y " was d i a b e t e s . The r e s e a r c h e r a l s o reviewed and v a l i d a t e d the i d e n t i f i e d c a t e g o r i e s and processes with the f i n a l informant and two e a r l i e r informants to ensure t h a t the r e p r e s e n t a t i o n was accurate and t h a t the c o n c e p t u a l i z a t i o n r e p r e s e n t e d t h e i r f a m i l i e s ' e xperience. To v a l i d a t e the f i n d i n g s f u r t h e r , . i n a d d i t i o n to r e l y i n g on the r e s e a r c h e r ' s i n t e r p r e t a t i o n of the informants' c u l t u r a l o r i e n t a t i o n , the r e s e a r c h e r used the EIQ t o p r o v i d e a q u a t i t a t i v e measure of the informants' degree of e t h n i c i d e n t i t y . These r e s u l t s were compared wi t h the r e s e a r c h e r ' s o b s e r v a t i o n s and i n t e r v i e w data t o i d e n t i f y c o n s i s t e n c i e s or i n c o n g r u e n c i e s between the r e s e a r c h e r ' s i n t e r p r e t a t i o n of the informants' c u l t u r a l o r i e n t a t i o n and the informants' s e l f -r a t e d c u l t u r a l o r i e n t a t i o n . An ongoing l i t e r a t u r e review p r o v i d e d an a d d i t i o n a l means of v a l i d a t i n g the theory t h a t was d e v e l o p i n g from the data. E s t a b l i s h e d t h e o r i e s r e l a t e d t o h e l p - s e e k i n g (Kleinman, 1978), a p p r a i s a l (Lazarus & Folkman, 1984), and work (Corbin & Strauss, 1988) confirmed v a r i o u s aspects of t h i s study's core s o c i a l p r o c e s s . F u r t h e r v a l i d a t i o n was assessed by comparing the r e s u l t s of t h i s study and an e a r l i e r n u r s i n g r e s e a r c h study which examined how Chinese-Americans d e f i n e and manage i l l n e s s (Louie, 1975). Atwood and Hinds (1986) suggest t h a t v a l i d i t y check i s 35 a l r e a d y b u i l t i n t o the grounded theory methodology. V a l i d a t i o n occurs d u r i n g the process of g e n e r a t i n g the product through constant comparative a n a l y s i s whereby the data c o n s i s t e n t l y guide the conceptual development of the l a b e l s and d e f i n i t i o n s f o r c a t e g o r i e s and p r o p e r t i e s as w e l l as t h e i r i n t e r r e l a t i o n s h i p s (p. 144). E t h i c a l C o n s i d e r a t i o n s E t h i c a l approval was obt a i n e d a c c o r d i n g t o the g u i d e l i n e s put f o r t h by the U n i v e r s i t y o f B r i t i s h Columbia B e h a v i o u r a l Sciences Screening Committee f o r Research and other Studies i n v o l v i n g Human Subjects (Appendix J) . In a d d i t i o n , e t h i c a l approval was obtained from the agencies through which the informants were r e c r u i t e d (Appendix J ) . In keeping w i t h g u i d e l i n e s which p r o t e c t p o t e n t i a l informants from c o e r s i o n , i n d i v i d u a l s who met the study c r i t e r i a were approached by a t h i r d p a r t y , e i t h e r a h o s p i t a l s t a f f nurse or a home care nurse, and giv e n a l e t t e r o f e x p l a n a t i o n (Appendix G) which e x p l a i n e d the purpose of the study. I f . the p o t e n t i a l informants agreed, the r e s e a r c h e r then spoke wit h the i n d i v i d u a l t o e x p l a i n the study f u r t h e r and to all o w him/her the o p p o r t u n i t y t o ask any quest i o n s or change h i s / h e r mind. When the informants agreed t o p a r t i c i p a t e , they were then asked t o read and to s i g n a consent form (Appendix F ) . Each i n d i v i d u a l was assured o f h i s / h e r r i g h t t o : 1) r e f u s e t o p a r t i c i p a t e 2) r e f u s e t o answer any p a r t i c u l a r q u e s t i o n , and 3) withdraw from the study at any time. Anonymity was assured by not u s i n g any informant's name 36 on any t r a n s c r i p t i o n s o r w r i t t e n m a t e r i a l . C o n f i d e n t i a l i t y was a s s u r e d by c o n d u c t i n g t h e i n t e r v i e w s i n a p r i v a t e l o c a t i o n o f t h e i n f o r m a n t ' s p r e f e r e n c e . I n a d d i t i o n , t h e o r i g i n a l c a s s e t t e t a p e s , t a p e t r a n s c r i p t i o n s , and f i e l d n o t e s were kept i n a l o c k e d drawer i n t h e r e s e a r c h e r ' s home. The tape t r a n s c r i p t i o n s and t h e f i e l d n o t e s w i l l be. r e t a i n e d i n d e f i n i t e l y by t h e r e s e a r c h e r . However, t h e c a s s e t t e s w i l l be e r a s e d once t h e f i n a l r e p o r t has been approved. S e n s i t i v i t y was shown to w a r d t h o s e i n f o r m a n t s who e x p r e s s e d c o n c e r n t h a t t h e p a t i e n t not know o f t h e d i a g n o s i s o r p r o g n o s i s . They were r e a s s u r e d by t h e r e s e a r c h e r t h a t t h e term " c a n c e r " o r " d y i n g " would not be used i f t h e i l l f a m i l y member was p r e s e n t and t h a t i t was not t h e i n t e n t o f t h e s t u d y t o i n t e r v i e w t h e i l l p e r s o n . I n f o r m a n t s were g i v e n o p p o r t u n i t i e s t h r o u g h o u t t h e i n t e r v i e w s t o s t o p i f t h e y f e l t t i r e d o r became t e a r f u l . None, however, wi s h e d t o s h o r t e n t h e i n t e r v i e w . One i n t e r v i e w was s h o r t e n e d a t t h e r e s e a r c h e r ' s d i s c r e t i o n when o t h e r f a m i l y members i n f o r m e d t h e i n f o r m a n t t h a t t h e y were g o i n g home whi c h meant t h a t h e r i l l husband would have no f a m i l y member p r e s e n t a t t h e b e d s i d e . Summary The method used i n t h i s s t u d y was t h e grounded t h e o r y approach. B o t h q u a l i t a t i v e and q u a n t i t a t i v e methods o f d a t a c o l l e c t i o n were used t o add v a l i d i t y t o t h e f i n d i n g s . The d a t a were co m p r i s e d o f t r a n s c r i b e d a u d i o t y p e s , f i e l d n o t e s , and s c o r e s from t h e EIQ. I n t e r v i e w d a t a were a n a l y z e d u s i n g c o n s t a n t c o m p a r a t i v e a n a l y s i s . As a n a l y s i s p r o g r e s s e d , t h e s i s a d v i s o r s a p p r a i s e d the emerging c o n c e p t u a l i z a t i o n f o r c l a r i t y , c o n s i s t e n c y , l i n k a g e s , and accuracy. R e s u l t s were v a l i d a t e d with t h r e e informants t o ensure t h a t the r e p r e s e n t a t i o n was a c c u r a t e . The study was based upon one f a m i l y member's p e r c e p t i o n of how t h e i r f a m i l y f u n c t i o n e d . Informants were s e l e c t e d a c c o r d i n g t o set c r i t e r i a and f o r t h e i r a b i l i t y t o a r t i c u l a t e t h e i r f a m i l i e s ' e x p e r i e n c e s . S i x a d u l t c h i l d r e n and one spouse p a r t i c i p a t e d i n the study. 38 Chapter Four RESULTS The r e s u l t s are the product of the r e s e a r c h e r a n a l y z i n g and i n t e r p r e t i n g the informants' accounts. Although each informant o f f e r e d a unique p e r s p e c t i v e of t h e i r f a m i l i e s ' experience and had unique experiences, the r e s e a r c h e r was abl e t o i d e n t i f y common themes among the informants' d e s c r i p t i o n s . These f i n d i n g s are examined i n the f o l l o w i n g manner. The chapter d i s c u s s e s f i r s t , the c h a r a c t e r i s t i c s o f the informants and t h e i r f a m i l i e s ; second, the b a l a n c i n g p r o c e s s ; t h i r d , past experiences and s t y l e o f p a t i e n t s and f a m i l y members; f o u r t h , the i n f l u e n c e s of c u l t u r a l b e l i e f s and p r a c t i c e s ; f i f t h , p e r f e r e n c e of l o c a t i o n o f care; and l a s t l y , the informants' comments about p a r t i c i p a t i n g i n the study. C h a r a c t e r i s t i c s of the Informants and T h e i r F a m i l i e s  C h a r a c t e r i s t i c s o f Informants General C h a r a c t e r i s t i c s Six Chinese informants (three males and t h r e e females) p a r t i c i p a t e d i n the study. A l l were immediate f a m i l y members of the p a t i e n t s . Of the s i x , f i v e were c h i l d r e n o f p a t i e n t s and one was a spouse. Three of the c h i l d r e n were sons and two were daughters of the p a t i e n t . One son and one daughter were the e l d e s t c h i l d i n the f a m i l i e s r e s i d i n g i n Canada. Informants' ages, t h a t were known, ranged from 27 t o 51 yea r s . The spouse's age was not known. However, the n u r s i n g s t a f f suggested t h a t her age corresponded c l o s e l y t o her 39 husband's age of 70 y e a r s . The average known age was 34 y e a r s . A summary of the informants' c h a r a c t e r i s t i c s i s p r e s e n t e d i n Table 2. E d u c a t i o n A l l c h i l d r e n informants had a minimum of secondary education, w i t h two having u n i v e r s i t y l e v e l e d u c a t i o n . Informants' P l a c e of Residence Four informants l i v e d w i t h the p a t i e n t . The other two informants had t h e i r own f a m i l y r e s i d e n c e s . Of the l a t t e r two informants, one stayed w i t h the p a t i e n t d u r i n g the day i n her b r o t h e r ' s home. The other informant p a r t i c i p a t e d i n c a r i n g f o r the p a t i e n t at the p a t i e n t ' s home. . Income of Informants' P l a c e of Residence The annual income of the informants' p l a c e of r e s i d e n c e ranged from $24,000 to $64,000. Three informants f e l l w i t h i n the lower range of $24,000 - $34,999, one w i t h i n $35,000 -$49,999 and one w i t h i n 50,000 - 64,999. The spouse's income was not known. Employment Three informants were employed, one was self-employed, one was a f u l l - t i m e homemaker and one was r e t i r e d . Of the t h r e e informants employed, one had taken a leave of absence t o care f o r the p a t i e n t . R e l i g i o u s A f f i l i a t i o n Three informants belonged t o the Buddhist f a i t h ; two informants d e s c r i b e d themselves as a g n o s t i c ; the spouse's r e l i g i o u s a f f i l i a t i o n was not known. TABLE 2 DEMOGRAPHIC CHARACTERISTICS OF INFORMANTS FAMILY N = 6 RELATION TO PATIENT AGE IN YEARS ETHNIC DATA EDUCATION HOUSEHOLD INCOME EMPLOYMENT POSITION LIVING WITH PATIENT PLACE OF BIRTH YEARS IN CANADA A SON 27 CANADA 27 UNIV $20000-34999 ENGINEER ND B DAUGHTER* 51 VIETNAM 22 UNIV $20000-34999 SELF-EMPLOYED ND C SON 27 HONGKONG 16 TECHNICAL INST $50000-64999 ENGINEER YES D WIFE 70 U.S.A. 10 (AFTER MANY YEARS IN HONG KONG) UNKNOWN UNKNOWN RETIRED YES E DAUGHTER 37 CHINA 31 SECONDARY $35000-49999 HOMEMAKER i\D F SON* 27 HONGKONG 14 TECHNICAL INST $20000-34999 LAB SUPERVISOR YES * ELDEST SON OR DAUGHTER IN CANADA o 41 H e a l t h Status of Informants Only one informant (F) d i s c u s s e d h i s own h e a l t h s t a t u s . He s t a t e d he had "a l o t of p a i n " , muscle p a i n , and s t r a i n he a s s o c i a t e d w i t h "the s i t u a t i o n " and l i v i n g with someone wit h an i l l n e s s t h a t i s u n p r e d i c t a b l e and out of h i s f a m i l y ' s c o n t r o l . E t h n i c C h a r a c t e r i s t i c s The e t h n i c c h a r a c t e r i s t i c s v a r i e d . Two informants were second g e n e r a t i o n Chinese, born i n Canada and the U n i t e d S t a t e s . Four informants immigrated to Canada. Of the four who had immigrated, two were from Hong Kong, one was from China and the f o u r t h was' from V i e t Nam.- T h e l e n g t h of time l i v i n g i n Canada v a r i e d among the informants from 14 t o 31 y e a r s . The average l e n g t h of stay was 21 y e a r s . These r e s u l t s are summarized i n Table 2. A l l informants spoke E n g l i s h d u r i n g the i n t e r v i e w s . However, t h e i r E n g l i s h v a r i e d from b e i n g e a s i l y understood by the r e s e a r c h e r (5) to l i m i t e d f l u e n c y (1). The one informant w i t h l i m i t e d f l u e n c y i n E n g l i s h requested her 19 year o l d daughter act as a t r a n s l a t o r so t h a t she c o u l d p a r t i c i p a t e i n the study. C h a r a c t e r i s t i c s of P a t i e n t s General C h a r a c t e r i s t i c s As i l l u s t r a t e d i n Table 3, f o u r p a t i e n t s were males and two were females. The males were married and the two female p a t i e n t s were widowed. T h e i r ages ranged from 52 years t o 90 years w i t h an average age of 74 y e a r s . The p a t i e n t s r e s i d e d TABLE 3 - DEMOGRAPHIC CHARACTERISTICS OF PATIENTS FAMILY N = 6 RELATION TO INFORMANT AGE IN YEARS ETHNIC DATA DIAGNOSIS TIME SINCE DIAGNOSIS KNOWLEDGE OF DIAGNOSIS # LIVING WITH PATIENT MARITAL STATUS PLACE OF BIRTH YEARS IN CANADA A FATHER 90 CHINA 70 METASTATIC CANCERTO SPINE/SKELETON 3 WEEKS (PAIN FOR MONTHS) YES SPOUSE ONLY MARRIED B MOTHER 79 VIETNAM 8 CANCER OF LIVER/LUNG 3 YEARS INITIALLY TOLD -NOW DESCRIBED AS COLD BY FAMILY 2 WIDOWED (1 YEAR) C FATHER 70 HONGKONG 16 CANCER OF BLADDER 3.5 YEARS « YES 5 MARRIED D HUSBAND 70 CANADA 10 (AFTER MANY YEARS IN HONG KONG) CANCER OF LUNG 4 MONTHS YES SPOUSE ONLY MARRIED E MOTHER 82 HONGKONG 31 CANCER OF PANCREAS 7 MONTHS ND 2 WIDOWED (23 YEARS) F FATHER 52 HONGKONG 14 CANCER OF LUNG METASTESES TO LIVER AND SPINE 5 MONTHS YES 4 MARRIED 43 wit h at l e a s t one other f a m i l y member. None of the p a t i e n t s was working at the time of the i n t e r v i e w s . Two were widowed at the time of i n t e r v i e w s . The p a t i e n t s ' cancer s i t e s i n c l u d e d l i v e r , lung, b l a d d e r and pancreas with metastases t o the spine, l i v e r and lung. Four p a t i e n t s were aware of t h e i r cancer d i a g n o s i s , the other two were not. Time s i n c e d i a g n o s i s ranged from 3 weeks t o 3 1/2 y e a r s . Since the i n t e r v i e w s were conducted, t h r e e p a t i e n t s have d i e d . E t h n i c C h a r a c t e r i s t i c s A l l p a t i e n t s were Chinese. F i v e had immigrated t o Canada. Three p a t i e n t s were from Hong Kong, one was from V i e t Nam and the f i f t h was from Mainland China. The s i x t h p a t i e n t was born i n Canada. Length of time i n Canada ranged from 8 years t o 70 y e a r s . C h a r a c t e r i s t i c s of Informants' F a m i l i e s  General C h a r a c t e r i s t i c s The number of immediate members per f a m i l y ranged from two to seven. Most p a r t i c i p a t e d i n managing the care of the p a t i e n t . Immediate f a m i l y members i n c l u d e d the p a t i e n t , spouse (where a p p l i c a b l e ) , informant and other c h i l d r e n . The extended f a m i l y members who a s s i s t e d w i t h the care c o n s i s t e d of g r a n d c h i l d r e n of the p a t i e n t , spouses of the a d u l t c h i l d r e n , aunts, u n c l e s , nephews, n i e c e s , and c o u s i n s . Some t r a v e l l e d from E a s t e r n Canada, the U n i t e d S t a t e s , and the O r i e n t t o a s s i s t . These r e s u l t s are pr e s e n t e d i n Table 4. 44 H e a l t h Status of Family Members In a l l but one f a m i l y , the c a r e g i v i n g members ( e x c l u d i n g the informants) were h e a l t h y . T h i s one member (spouse, Family A) had cancer diagnosed e l e v e n years b e f o r e with r e c e n t r e c u r r e n c e r e q u i r i n g surgery and was at the time undergoing chemotherapy. E t h n i c C h a r a c t e r i s t i c s of the Informants'  Immediate Family Members Three f a m i l i e s immigrated from Hong Kong, one from V i e t Nam, and one from China. T h e i r l e n g t h of time i n Canada ranged from 14 years t o 31 y e a r s . The spouse informant d i d not have any immediate f a m i l y l i v i n g nearby. However, some of her extended f a m i l y l i v e d i n a m e t r o p o l i t a n area i n western Canada and i n the U n i t e d S t a t e s . The extended f a m i l y of the spouse's husband (the p a t i e n t ) l i v e d i n e a s t e r n Canada. Past Experience w i t h Canadian H e a l t h Care System Four informants (A, B, C, E) d e s c r i b e d having p r e v i o u s exposure t o i l l n e s s and having sought a s s i s t a n c e from the western h e a l t h care system. The informants of the other two f a m i l i e s d i d not d e s c r i b e any p e r s o n a l c o n t a c t w i t h western h e a l t h care p r o f e s s i o n a l s . However, one of these two f a m i l i e s had a nephew who was a p h y s i c i a n t r a i n e d i n the west. TABLE 4 - COMPOSITION OF INFORMANTS' FAMILIES IMMEDIATE FAMILY EXTENDED FAMILY FAMILY RELATION TO SPOUSE CHILDREN OF PATIENT N = 6 INFORMANT LIVING TOTAL NUMBER NO. INVOLVED IN PROCESS NO. INVOLVED IN PROCESS A FATHER YES 1-S 1-D 1-S NONE B MOTHER DECEASED (1 YEAR) 1-S 6-D ALL 4 C FATHER YES 4-S 3-D 3 -S 3-D 5 D HUSBAND YES NONE N / A 6 E MOTHER DECEASED (23 YEARS) 2 -S 2-D ALL 2 F FATHER YES 3-S ALL 1 LEGEND S = SON D = DAUGHTER EXTENDED FAMILY = AUNTS, UNCLES NEPHEWS, NIECES, COUSINS, GRANDCHILDREN, INLAWS 46 Conceptual A n a l y s i s : B a l a n c i n g Process Reported i n the f o l l o w i n g s e c t i o n i s the conceptual a n a l y s i s o f the process of B a l a n c i n g which c h a r a c t e r i z e d the informants' p e r c e p t i o n o f how t h e i r f a m i l i e s managed the care of a f a m i l y member with advanced cancer. B a l a n c i n g was comprised of four i n t e r r e l a t e d management s t r a t e g i e s : gauging, a n t i c i p a t i n g , s h a r i n g the l o a d and r e s o u r c i n g , as i l l u s t r a t e d i n F i g u r e 1. Gauging c o n s i s t e d o f judging and measuring the p a t i e n t ' s c o n d i t i o n and the f a m i l i e s ' a b i l i t y t o manage the demands; a n t i c i p a t i n g i n v o l v e d a c t i v i t i e s t h a t helped prepare the f a m i l i e s f o r the unexpected, the expected, and the i n e v i t a b l e ; s h a r i n g the l o a d was how the immediate f a m i l y members d i v i d e d up the t a s k s and supported each other; and r e s o u r c i n g i n v o l v e d seeking and r e c e i v i n g a s s i s t a n c e from o u t s i d e the immediate f a m i l y . B a l a n c i n g L i k e most f a m i l i e s f a c e d w i t h the r e a l i z a t i o n t h a t a c o n d i t i o n i s t e r m i n a l , the Chinese f a m i l i e s i n t h i s study experienced shock and dismay at d i s c o v e r i n g a f a m i l y member had cancer. Family l i f e , as they had known i t , had f o r e v e r changed. A r e o r g a n i z a t i o n of f a m i l y l i f e became necessary t o accommodate the demands of c a r e g i v i n g , the changes i n the i l l f a m i l y member's r o l e and to maintain some semblance of. everyday f a m i l y l i f e . D e a l i n g w i t h t h i s p r e c a r i o u s s i t u a t i o n , brought about by the u n c e r t a i n t y and u n p r e d i c t a b i l i t y of the i l l n e s s , r e q u i r e d constant j u g g l i n g or " b a l a n c i n g " of the f a m i l y members' time and r e s p o n s i b i l i t i e s . FIGURE i "Balancing" Process 48 B a l a n c i n g enabled the Chinese f a m i l i e s t o manage two se t s o f demands: 1) the c a r e g i v i n g demands a r i s i n g from the f a m i l y member's i l l n e s s and care requirements and 2) the f a m i l y demands a r i s i n g from everyday l i v i n g and developmental changes. As the care demands i n c r e a s e d , the time, manpower, and energy remaining t o accommodate f a m i l y demands l e s s e n e d as i l l u s t r a t e d by the l a r g e o v e r l a p i n the demands i n F i g u r e 2. C a r e g i v i n g demands took precedence while f a m i l y demands were delayed or ign o r e d . FIGURE 2 - Overlap of C a r e g i v i n g Demands and Family Demands Conversely, as the care demands decreased and the a s s i s t a n c e r e q u i r e d by the i l l f a m i l y member was reduced, the time, manpower, and energy a v a i l a b l e f o r d e a l i n g with f a m i l y demands i n c r e a s e d . Even when c a r e g i v i n g demands decreased, 49 they continued t o o v e r l a p the f a m i l y demands u n t i l the p a t i e n t s ' death. B a l a n c i n g the two s e t s of demands o c c u r r e d whether the p a t i e n t s were be i n g cared f o r i n the home or h o s p i t a l s e t t i n g s . Past experiences and past p a t t e r n s of coping ( s t y l e ) of the p a t i e n t s and f a m i l y members i n f l u e n c e d the onset and d u r a t i o n o f time t h a t management s t r a t e g i e s were used by f a m i l y members f o r b a l a n c i n g . C u l t u r a l b e l i e f s and p r a c t i c e s i n f l u e n c e d the a c t i o n s of the f a m i l y members and reasons g i v e n f o r t h e i r a c t i o n s but they d i d not i n f l u e n c e the process i t s e l f . For the m a j o r i t y o f the informants' f a m i l i e s (4/6) , the b a l a n c i n g process began i n h o s p i t a l when the f a m i l i e s were informed by the p h y s i c i a n of the d i a g n o s i s of cancer, of the se r i o u s n e s s o f the s i t u a t i o n , and of the i n e v i t a b l e nature o f the i l l n e s s : Mrs. D: They took the f l u i d out and found i t was malignant. Then the docto r s a i d t h a t t h e r e was no t h i n g t h a t c o u l d be done f o r him. I t was i n o p e r a b l e . The informants p e r c e i v e d the d i a g n o s i s o f cancer t o be a p a i n f u l and dreaded d i s e a s e : Mr. F: O v e r a l l , I t h i n k the Chinese are p r e t t y w e l l s c a r e d o f the word cancer. They know i t ' s i n c u r a b l e and i t i s a deadly d i s e a s e . They know t h a t . The informants, however, d i d not i n t e r p r e t t h e i r f e a r of cancer t o be founded i n c u l t u r a l myths or taboos but, r a t h e r a p e r c e p t i o n t h a t most people have of the d i a g n o s i s : Mr. A: I haven't heard t h a t t h e r e i s a taboo or stigma about cancer. I t i s t h a t people are more aware now a days t h a t cancer i s q u i t e a major cause of death. 50 T h e i r f e a r of cancer was i n f l u e n c e d by the community and by what they read or heard from f r i e n d s who had experience w i t h cancer: Mrs. E: We have heard from f r i e n d s t h a t cancer can be so p a i n f u l . She (the p a t i e n t ) i s not i n t h a t much p a i n at t h i s time so we wonder i f i t w i l l be worse l a t e r . For one informant, the p a t i e n t ' s response t o h i s d i a g n o s i s and p r o g n o s i s i n i t i a t e d the b a l a n c i n g process when he withdrew from performing h i s normal f u n c t i o n s and expected h i s spouse t o assume them. In one of the two remaining f a m i l i e s , b e i n g informed of the i n e v i t a b l e nature of her mother's i l l n e s s d i d not occur u n t i l l a t e r when the informant n o t i c e d t h a t her mother's c o n d i t i o n had changed: Ms. B: ...about two months ago, her c o n d i t i o n changed and she became very i l l . Her abdomen became hard [from tumor i n l i v e r ] and she always f e l t t i r e d . The d o c t o r t o l d me t h a t she does not have long t o l i v e . She i s very s i c k now. For her, the process of b a l a n c i n g began at t h i s p o i n t . In the remaining f a m i l y , the informant d e s c r i b e d t h a t s h a r i n g the l o a d and r e s o u r c i n g began when the p a t i e n t experienced i n t e n s e p a i n accompanied by immobility, l o s s of independence, and the need f o r p e r s o n a l care and e l i m i n a t i o n management. The informant i n d i c a t e d t h a t the p a t i e n t p e r c e i v e d h i m s e l f as dying. The f a m i l y , however, d i d not share t h i s p e r c e p t i o n u n t i l t h r e e weeks bef o r e h i s death when they were t o l d of the d i a g n o s i s and t h a t the p a t i e n t ' s c o n d i t i o n was t e r m i n a l . D e s c r i p t i o n s of gauging and a n t i c i p a t i n g became ev i d e n t s h o r t l y a f t e r t h i s . 51 Family Demands The informants d e s c r i b e d t h a t f a m i l y demands c o n s i s t e d of f a m i l y members' everyday r e s p o n s i b i l i t i e s , both w i t h i n the f a m i l y and the l a r g e r community. R e s p o n s i b i l i t i e s i n c l u d e d m a i n t a i n i n g f a m i l y l i f e and meeting every day and developmental requirements. Although a l l informants were faced with s i m i l a r demands, a d u l t c h i l d r e n s ' f a m i l y demands encompassed t h e i r own f a m i l y as w e l l as t h a t of t h e i r p a r e n t s . A l l a d u l t c h i l d r e n a s s i s t e d i n some way w i t h m a i n t a i n i n g t h e i r p a r e nts' home. Family demands w i t h i n the i n t e r n a l f a m i l y environment i n c l u d e d : 1) m a r i t a l t a s k s i n v o l v e d i n m a i n t a i n i n g a marriage (e.g., spending time as a c o u p l e ) ; 2) domestic t a s k s i n v o l v e d i n running or keeping a home(s) (e.g., cooking meals, housekeeping chores, washing c l o t h e s , shopping f o r g r o c e r i e s , y a r d work, r e p a i r i n g and m a i n t a i n i n g a home); 3) c u l t u r a l l y r e l a t e d t a s k s i n v o l v e d i n performing r i t u a l s (e.g., b u r n i n g paper money f o r ancestors, conducting sermons or ceremonies t o the gods on a monthly and y e a r l y b a s i s ) ; 4) f i n a n c i a l o b l i g a t i o n s i n v o l v e d i n m a i n t a i n i n g the parents' home; 5) c h i l d - c a r e t a s k s i n v o l v e d i n r a i s i n g c h i l d r e n ; and 6) r e s p o n s i b i l i t i e s a s s o c i a t e d w i t h major f a m i l y events, such as b i r t h s . Family demands a l s o encompassed the i n d i v i d u a l f a m i l y members' needs f o r p h y s i c a l comfort and emotional support i n everyday l i f e : Mr. F: Sometimes my mom comes to up to us (her t h r e e sons) and says "I don't know what I w i l l do without him" and t h i n g s l i k e t h a t . We j u s t have to h e l p each other. 52 The informants d e s c r i b e d s l e e p l e s s n e s s , f e a r , worry, u n c e r t a i n t y , emotional s t r a i n , a l t e r e d r o l e s and l i f e s t y l e s as demands they and other f a m i l y members were d e a l i n g w i t h . Family demands w i t h i n the community at l a r g e i n c l u d e d : 1) o c c u p a t i o n a l r e s p o n s i b i l i t i e s (e.g., four informants worked, one informant owned a s t o r e , other f a m i l y members had b u s i n e s s e s ) ; 2) c o o r d i n a t i o n of t a s k s i n v o l v e d i n the completion of government-related forms (e.g., completion of s o c i a l s e r v i c e and housing forms, t a x e s ) ; and 3) demands i n v o l v e d i n b e i n g a member of a group i n the community (e.g., a church group). For one informant, f a m i l y demands a l s o i n c l u d e d requests made of him by h i s i l l f a t h e r t h a t reached beyond h i s immediate f a m i l y : Mr. G: Sometime he asks us t o do some er r a n d t h a t he promised h i s f r i e n d s t h a t I would h e l p them out with b e f o r e he asks me i f I am a v a i l a b l e or not. He v o l u n t e e r s us t o do these t h i n g s . I f he wasn't s i c k then I would argue w i t h him but now you have t o t h i n k t w i c e . The extent t o which the f a m i l y had to compromise f a m i l y demands t o accommodate c a r e g i v i n g demands was d i r e c t l y i n f l u e n c e d by the extent of the c a r e g i v i n g demands and the a d d i t i o n a l r o l e o b l i g a t i o n s o r i g i n a t i n g from p a t i e n t s ' r o l e changes. C a r e g i v i n g Demands C a r e g i v i n g demands stemmed from the p h y s i c a l and emotional needs of the p a t i e n t and from how the f a m i l i e s managed the i l l n e s s . Tasks r e l a t e d to p h y s i c a l care i n c l u d e d : 1) d i e t a r y c o n t r o l , 2) ambulation, 3) bowel and b l a d d e r management, 4) managing l i m i t a t i o n s of a c t i v i t y , and 5) bathing/comfort 53 care. Tasks related to emotional care included: 1) reducing s o c i a l i s o l a t i o n , 2) dealing with sadness, depression, g r i e f and fear, and 3) performing tasks associated with c u l t u r a l b e l i e f s that o f f e r hope and support. Tasks related to the management of the i l l n e s s included: 1) symptom management, 2) wound care, 3) transportation to appointments with health care professionals, 4) seeking the assistance of a her b a l i s t , c o l l e c t i n g information and preparing herbs for use, and 5) acting as an interpreter for health care professionals. Family members were expected to do many of these tasks even when the patients were admitted to h o s p i t a l . For example, i n some families, the patient requested that t h e i r care be provided by family members. Family members also acted as translators and brought herbal soups to the patient when i n ho s p i t a l . The caregiving demands were influenced by fluctuations i n the patient's condition. The u n p r e d i c t a b i l i t y of the patient's condition resulted i n constant changes i n the degree of caregiving demands. For example, episodes of acute symptoms, such as b i l i a r y obstruction, resulted i n dramatic changes i n the patient's a c i t i v i t y l e v e l s , l e v e l of alertness, and comfort thus creating additional care demands. As the disease progressed and the patient's condition deteriorated, the care demands became increasingly greater. In summary, the informants described that t h e i r families were constantly balancing family demands with caregiving demands. In order to carry out balancing, the families engaged i n four management strategies: gauging, anticipating, 54 s h a r i n g the l o a d and r e s o u r c i n g . B a l a n c i n g was constant and ongoing due to the u n p r e d i c t a b i l i t y of and f l u c t u a t i o n s i n the p a t i e n t ' s c o n d i t i o n . Management S t r a t e g i e s of B a l a n c i n g The management s t r a t e g i e s t h a t made up the b a l a n c i n g p rocess i n t e r r e l a t e and o v e r l a p . Gauging, a n t i c i p a t i n g , s h a r i n g the l o a d and r e s o u r c i n g were used i n v a r i o u s combinations by the f a m i l i e s i n b a l a n c i n g the f a m i l y and c a r e g i v i n g demands both i n the home and h o s p i t a l s e t t i n g s . Even though some s t r a t e g i e s were d e s c r i b e d i n more depth than others, they were of equal importance i n the process of b a l a n c i n g . Informants found some s t r a t e g i e s e a s i e r t o d e s c r i b e than others perhaps because some r e q u i r e d more e f f o r t t o perform while others came more n a t u r a l l y . A d u l t c h i l d r e n informants who had m u l t i p l e f a m i l y demands to jug g l e (e.g., c h i l d r e n , f u l l - t i m e jobs, t h e i r own immediate f a m i l y , parents as a couple, and each parent's needs) d i s c u s s e d s h a r i n g the l o a d more than the spouse informant who was r e t i r e d w i t h no c h i l d r e n . She d e s c r i b e d r e s o u r c i n g more e x t e n s i v e l y , which i s c o n s i s t e n t w i t h where most of her a t t e n t i o n was focused. Because the s t r a t e g i e s were c l o s e l y i n t e r r e l a t e d , they were not e a s i l y d i s t i n g u i s h a b l e from each other. There were, however, common a c t i v i t i e s which c h a r a c t e r i z e d each s t r a t e g y . These a c t i v i t i e s were used both i n the home and when the p a t i e n t was i n the h o s p i t a l . 55 Gauging Gauging i s d e f i n e d by the Merriam-Webster D i c t i o n a r y (1987) as a "measurement a c c o r d i n g to some standard or system; t o determine the c a p a c i t y ; t o estimate or judge" (p. 299). Gauging began at the onset of the b a l a n c i n g process and went on u n t i l death of the p a t i e n t . Informants r e p o r t e d t h a t f a m i l y members were c o n s t a n t l y measuring, determining or judging the i l l member's v e r b a l and non-verbal behaviour to determine whether she/he was improving, s t a y i n g the same or d e t e r i o r a t i n g . S i m i l a r l y , f a m i l i e s judged t h e i r own i n t e r n a l and e x t e r n a l r e s o u r c e s as w e l l as t h e i r a c t i v i t i e s t o determine whether they c o u l d continue to accommodate the two s e t s of demands. These a c t i v i t i e s comprised the s t r a t e g y of gauging. Data c o l l e c t e d about the p a t i e n t most f r e q u e n t l y p e r t a i n e d t o p h y s i c a l behaviour, such as the amount of food eaten, l e v e l of s t r e n g t h , degree of m o b i l i t y , number of naps taken, and the amount the p a t i e n t conversed or p a r t i c i p a t e d i n everyday f a m i l y l i f e . These behaviours served as i n d i c a t o r s of the persons' h e a l t h s t a t u s a c c o r d i n g t o the f a m i l y ' s own p e r c e p t i o n of improvement, s t a b i l i t y , and d e t e r i o r a t i o n : Mr. F: When he j o i n s w i t h us, at dinner time and t a l k s and t h i n g s l i k e t h a t , i t ' h e l p s everybody. Everybody f e e l s a l o t b e t t e r when he i s more a c t i v e and j o i n i n g i n on normal t h i n g s . Mr. C: So you watch the amount he eats — we have l i t t l e bowls t h a t we have r i c e i n . Now, u s u a l l y he takes a r e g u l a r amount, l i k e two bowls of r i c e everyday. I t i s seldom t h a t he changes. The f a m i l i e s a l s o used the p a t i e n t s ' emotions as i n d i c a t o r s : 56 Mr. C: The time we worry i s when he doesn't say anything. When he i s s a y i n g he i s going t o d i e , he i s probably mad at me f o r something I f o r g o t t o do, so he g i v e s me a l i t t l e shot. Mr. F: He i s a b i t moody sometimes; then we know something i s wrong. The b a s i s f o r determining the s i g n i f i c a n c e of the p a t i e n t ' s behaviour r e l a t e d t o h i s or her past p a t t e r n s of behaviour and behaviours observed as the person's c o n d i t i o n changed. As time passed, f a m i l y members became a l e r t t o s u b t l e s i g n s t h a t s i g n a l l e d the s t a t e of the i l l person's h e a l t h and l e a r n e d how to i n t e r p r e t cues i n the i l l person's behaviour: Mr. F: Well, we take good watch on him — sometimes he f e e l s b e t t e r . . . he may f e e l a l o t b e t t e r so you know v i s u a l l y you can t e l l . When the informants were i n i t i a l l y d e v e l o p i n g e x p e r t i s e i n gauging, they were aware of the e f f o r t i t took t o ask q u e s t i o n s , i n t e r p r e t , watch, and l e a r n . G r a d u a l l y , as they became s k i l l f u l at gauging, i t became "second nature": Mr. C: . . . i t i s j u s t t h a t you n o t i c e , you have to spend most of the time you are here, i f something goes wrong, you know — I guess, i t becomes second nature. . . . a f t e r awhile you s o r t of not get used to i t but you l e a r n t o d e a l with i t b e t t e r . Mr. F: something happens you l e a r n t o c o n t r o l or we can't c o n t r o l but — you l e a r n t o adapt t o the s i t u a t i o n . Worrisome or unusual behaviour r e q u i r e d t h a t f a m i l i e s expend i n c r e a s e d energy t o determine i t s s i g n i f i c a n c e : Mr. C: ... a l l of a sudden he w i l l say "I f e e l r e a l l y t i r e d " then I observe how much he i s e a t i n g and I pay a l i t t l e b i t more a t t e n t i o n when I see a break i n h i s u s u a l schedule. Then I ask Mom 57 i f she n o t i c e d anything wrong. I f she doesn't know then I ask him. I t r y t o put i t s u b t l y and ask what i s the matter and t o t e l l him t h a t he should l e t me know i f he f e e l s something. S i m i l a r l y , when t h e r e was no evidence of worrisome behaviour, minimal energy was r e q u i r e d : Mr. C: . . . i t i s not e x t r a work or something t h a t you r e a l l y have t o work at I f i n d . The amount of t e n s i o n and worry experienced by f a m i l y members i n c r e a s e d and decreased depending on the judgments r e s u l t i n g from gauging. With every f l u c t u a t i o n i n behaviour, the f a m i l i e s ' emotions c o r r e s p o n d i n g l y a l t e r e d on a continuum of l e s s worry t o more worry: Mr. C: ... l i k e y esterday he was s l e e p i n g at t h i s time and I began t o worry. How come he i s s l e e p i n g at t h i s time. T h i s i s not u s u a l f o r him. Then I thought he may be t i r e d from b e i n g out the n i g h t b e f o r e . I n o t i c e t h a t he i s e a t i n g f i n e so he i s probably OK but i f he goes t o bed e a r l y again then I w i l l s t a r t t o r e a l l y worry. . As p r e v i o u s p a t t e r n s of behaviour a s s o c i a t e d with s t a b i l i t y and improvement diminished, worry i n c r e a s e d and gauging i n t e n s i f i e d : Mrs. E: She cannot go up the s t a i r s anymore. She stays down i n her s u i t e i n the basement ( i n the son's home) and has d i n n e r here. She eats so l i t t l e now. Her a p p e t i t e i s completely down. She eats something l i k e two tablespoons of r i c e . Mrs. D: Before I would take him (the p a t i e n t ) out f o r a walk, every now and then but l a t e r on, he j u s t s a i d I'm too t i r e d . Information p r o v i d e d to the informants and t h e i r f a m i l y members by f r i e n d s and f a m i l y with s i m i l a r experiences and by the f a m i l y p h y s i c i a n was i n c o r p o r a t e d i n t o gauging and p r o v i d e d the b a s i s f o r the meaning of the new behaviour. One 58 informant d e s c r i b e d how input from a d i s t a n t f a m i l y member a s s i s t e d her gauging when her husband was n e a r i n g death. The person was the 97 year o l d grandmother of the informant's . n i e c e who flew i n from western coast of the U n i t e d S t a t e s t o v i s i t the informant's husband and to a s s i s t the f a m i l y . She was d e s c r i b e d as having a " r e a l t y p i c a l o l d Chinese s t y l e w i t h experience i n h e l p i n g people who are r e a l l y s i c k " : Mrs. D: So she came and p u l l e d up, h i s eye l i d ' . . . she s a i d when you l i f t a very s i c k person's eye l i d and i f you see a white f i l m , t h a t ' s i t , he i s r e a l l y going but when she l i f t e d up my husband's eye l i d she d i d n ' t see t h a t f i l m y e t . She s a i d "oh, he i s very i l l , but the time i s not y e t . While f a m i l y members were gauging the p a t i e n t ' s c o n d i t i o n , they were a l s o gauging t h e i r i n t e r n a l and e x t e r n a l resources and a b i l i t i e s t o accommodate the c a r e g i v i n g demands and the f a m i l y demands: Mr. C: I t h i n k so f a r we have been doing not bad, we are managing. Mr. F: I don't t h i n k we need support groups or those types of supports i n the community. Mrs. E: Having a homemaker come d a i l y between 11 and 2 to h e l p prepare mom's lunch and g i v e her a bath and wash the f l o o r s , vacuum the f l o o r s so t h a t has helped as i t f r e e s me d u r i n g t h a t time to p i c k up the k i d s from school and prepare t h e i r l u nch. Some informants r e f e r r e d mainly to a c t i v i t i e s d i r e c t e d at c a r e g i v i n g s i n c e most of t h e i r time was taken up with these demands, while others d e s c r i b e d a c t i v i t i e s and resources d i r e c t e d at b a l a n c i n g both demands: Mrs. D: I was t r y i n g t o look f o r some nurse or male aide who was s t r o n g enough t o h e l p l i f t him. 59 Mr. F: I don't t h i n k we need a homemaker r i g h t now anyways.... f i n a n c i a l l y , I don't r e a l l y need the money r i g h t now so being o f f work to care f o r my dad f o r t h a t reason i s OK. But, i t i s a b i t hard not working as you tend t o miss i t once you have been wi t h an o r g a n i z a t i o n f o r a long time. F a m i l i y members made judgments about t h e i r a b i l i t y t o manage by comparing the p a t i e n t ' s s t a t u s and c a r e g i v i n g needs t o the f a m i l y members' p h y s i c a l a b i l i t i e s : Mrs. D: ...I couldn't handle him anymore. He was g e t t i n g too heavy even f o r my nephew t o l i f t because he was so limp. While informants d e s c r i b e d gauging of f a m i l y members' a b i l i t i e s and resources l e s s e x p l i c i t l y than gauging of the p a t i e n t ' s s t a t u s , i t was c l e a r l y an important p a r t o f the f a m i l i e s ' b a l a n c i n g p r o c e s s . A n t i c i p a t i n g T h i s s t r a t e g y c o n t a i n s the a c t i v i t i e s o f f a m i l y members i n managing the u n c e r t a i n t y and u n p r e d i c t a b i l i t y a s s o c i a t e d with the i l l n e s s and the f u t u r e . Family members r e q u i r e d forethought and p l a n n i n g t o prepare.themselves f o r the unexpected, the expected and the i n e v i t a b l e . Being prepared p r o v i d e d them with a sense of some degree of c o n t r o l and assurance of r e a d i n e s s . A n t i c i p a t i n g the unexpected i n v o l v e d s i t u a t i o n s a s s o c i a t e d with the p a t i e n t . I t meant being i n c l o s e p r o x i m i t y t o the p a t i e n t and being prepared t o act should the need a r i s e : Ms. B: I t i s a matter of always having j u s t somebody to help i n case of a d i f f i c u l t y . Mr. F: ...someone has to be home t o s i t by him, t h a t ' s about i t . You know t h i s type o f i l l n e s s i t i s 60 hard t o say, anything can happen ~ t h i n g s can happen at any time so we j u s t have t o be prepared. Mrs. E: ...being here with her, i f anything happens l i k e she f a l l s down w e l l , I am keeping an eye on her. Being nearby and ready t o o f f e r a s s i s t a n c e whenever needed prepared the f a m i l y members e m o t i o n a l l y thereby r e d u c i n g a n x i e t y and a f e e l i n g of h e l p l e s s n e s s : Ms. B: I worry more when she i s not l i v i n g with me. I don't know what I can do to h e l p . I t i s b e t t e r f o r me when she i s here w i t h me. One reason given f o r engaging i n a n t i c i p a t i n g was t o p r o t e c t the p a t i e n t from p h y s i c a l harm. A n t i c i p a t i n g was observed by the r e s e a r c h e r d u r i n g an i n t e r v i e w when one informant watched the p a t i e n t ' s a b i l i t y t o balance and move with a cane. She rushed t o a s s i s t i n a n t i c i p a t i o n of a f a l l when the p a t i e n t became i n c r e a s i n g l y unsteady. While most a n t i c i p a t i n g a c t i v i t i e s were a s s o c i a t e d w i t h being prepared f o r the unexpected, the informants a l s o d e s c r i b e d a n t i c i p a t i n g i n terms of p l a n n i n g i n advance f o r changes i n the f u t u r e or p r e p a r i n g t h e i r f a m i l i e s t o accommodate f u t u r e events. For example, one informant was a n t i c i p a t i n g when he would r e t u r n to work p a r t - t i m e should the p a t i e n t ' s c o n d i t i o n s t a b i l i z e enough to r e l a x h i s v i g i l . . In another informant's f a m i l y , a n t i c i p a t i n g the expected meant p r e p a r i n g t o accommodate a d d i t i o n a l f a m i l y demands when h i s two s i s t e r s gave b i r t h . In order t o adhere to c u l t u r a l t r a d i t i o n s which p r o h i b i t the new mothers from e n t e r i n g the p a t i e n t ' s home f o r a 30-day p e r i o d , the f a m i l y members planned i n advance to r e d i s t r i b u t e the two womens' r e s p o n s i b i l i t i e s among the other f a m i l y members: Mr. C: We know f o r a f a c t t h a t i t i s j u s t one of those t h i n g s i n the c u l t u r e . For the f i r s t 30 days they (two daughters] cannot help, they won't be around. A l l they can do i s c a l l . I f anything needs to be done then we w i l l share i t . P l a n n i n g i n advance ensured adequate support and a s s i s t a n c e was a v a i l a b l e f o r b a l a n c i n g the ongoing demands. The informants a l s o d e s c r i b e d a n t i c i p a t i n g f o r the i n e v i t a b l e , f o r when the p a t i e n t d i e d : Mr. C: When my dad passes away I t h i n k the f a m i l y would share, everybody would share the r e s p o n s i b i l i t y l i k e we do now. I t i s j u s t a matter of time, time to recover from the death. Of course, we would o f f e r mom l o t s of support. A l l informants had given some forethought t o the circumstances surrounding f u t u r e h o s p i t a l i z a t i o n of the p a t i e n t . T h i s a n t i c i p a t i n g enabled the f a m i l i e s t o be b e t t e r prepared when emergency s e r v i c e s ( i . e . , ambulances) were needed and to a n t i c i p a t e how the f a m i l y as a u n i t would d e a l with f a m i l y demands to allow someone t o remain with the p a t i e n t once he or she was h o s p i t a l i z e d . Involvement i n a n t i c i p a t i n g v a r i e d among f a m i l y members depending upon the extent of f a m i l y demands: Mr. C: ...everybody has t o work d u r i n g the week so we s p l i t them up. I w i l l watch Dad while my s i s t e r takes Mom out f o r awhile. My other b r o t h e r does not have much time because of h i s b u s i n e s s and he has two k i d s , a wife, and home of h i s own to take care o f . Ms. B: " I f my mother stayed with me, I can see her every day and I can h e l p but i f she l i v e i n her own home with my s i s t e r s , I can do l i t t l e t o h e l p . I can only phone every day. I have the s t o r e t o run and t h r e e c h i l d r e n , very busy. I 62 don't d r i v e e i t h e r . Often, a v a i l a b l e f a m i l y members would take t u r n s s t a y i n g w i t h the p a t i e n t i n case something happened. P l a n n i n g i n a n t i c i p a t i o n of an expected f u t u r e event was d i s c u s s e d t o d i f f e r e n t degrees w i t h other f a m i l y members. For example, one informant ( e l d e s t son) and h i s mother made the d e c i s i o n s f o r the p a t i e n t , without i n v o l v i n g the younger sons . In c o n t r a s t , i n another f a m i l y , involvement i n p l a n n i n g and decision-making v a r i e d depending on the i s s u e . When i t i n v o l v e d the p a t i e n t , the sons were r e l i e d on s i n c e they were viewed by the p a t i e n t t o be "trustworthy", whereas women were p e r c e i v e d as " o u t s i d e r s " i n the f a m i l y and thus h e l d l e s s i n f l u e n c e . The onset of a n t i c i p a t i n g was r e l a t e d to a change i n the p a t i e n t ' s c o n d i t i o n . For two informants, i n c r e a s e d evidence of d e t e r i o r a t i o n i n the p a t i e n t ' s c o n d i t i o n t r i g g e r e d i t s use: Mrs. D: At the b e g i n n i n g he d i d n ' t mind s t a y i n g alone but then when I saw how he was g e t t i n g I myself d i d not want t o go out.. Somebody has to watch him, somebody's got to take care of him. A n t i c i p a t i n g o c c u r r e d both i n the home and h o s p i t a l s e t t i n g s . When the p a t i e n t was admitted t o the h o s p i t a l , p r e p a r i n g f o r the unexpected i n t e n s i f i e d f o r most (5/6) of the informants' f a m i l i e s : Mr. C: ... maybe t h e r e i s something t h a t he needs or he wants t o t r a n s l a t e or he became worse and nobody knew what he wanted so they c o u l d not h e l p him. Maybe he needs a d e c i s i o n made f o r him. We don't want to g i v e the chances away so i f we can help then we should be t h e r e . In c o n t r a s t , the s i x t h informant d i d not d e s c r i b e a c t i v i t i e s 63 associated with a n t i c i p a t i n g a f t e r the patient was admitted to the h o s p i t a l . The spouse's v i s i t s were l i m i t e d to every other day and the informant v i s i t e d twice "to o f f e r support to his mother". He did, however, discuss future l i v i n g arrangements for his mother when the patient died. The difference can best be attributed to the families' negative past experiences with the patient and the ongoing resentment f e l t by the informant. The communication style between the patient and family members r e f l e c t e d t h e i r previous closed s t y l e of not communicating. Sharing the Load Sharing the load i s the t h i r d management strategy of the balancing process. It f i g u r a t i v e l y captures the e f f o r t required of the family members in balancing the caregiving demands and the everyday family demands. A c t i v i t i e s associated with sharing the load included p u l l i n g together, taking turns, sharing r e s p o n s i b i l i t i e s , s h i f t i n g obligations, giving assistance, sharing concerns, and spending time together. Sharing the load referred to p a r t i c i p a t i o n or involvement i n managing the work at hand though i t did not mean equal d i s t r i b u t i o n of r e s p o n s i b i l i t i e s . By p u l l i n g together, the family members provided the manpower needed to share the load. The composition of the workforce and the d i v i s i o n of labor varied among families. For example, one family's a b i l i t y to share the load was hampered by i t s li m i t e d numbers. Only two family members were available and 64 the one extended f a m i l y member (spouse of informant) d i d not a s s i s t because of negative past experiences w i t h the p a t i e n t . In c o n t r a s t , i n another f a m i l y , eleven members p a r t i c i p a t e d i n b a l a n c i n g , thus making the d i s t r i b u t i o n of t a s k s e a s i e r , but the involvement of so many f a m i l y members added t o the complexity and j u g g l i n g needed t o accommodate the i n c r e a s e d f a m i l y demands a s s o c i a t e d with the v a r i o u s households. For four informants, s h a r i n g the l o a d was based on a sense of r e c i p r o c i t y or o b l i g a t i o n r o o t e d i n the informants' c u l t u r a l v a l u e s of the " f a m i l y " . As one informant s t a t e d , when asked f o r an e x p l a n a t i o n of her f a m i l y ' s a c t i o n s : Ms. B: ...because f o r Chinese, the f a m i l y i s number one. T h i s a t t i t u d e or approach t o the s i t u a t i o n was d e s c r i b e d more e x p l i c i t l y by two of the informants (B and C) with h i g h e r EIQ scores and by one informant (E) with a low EIQ s c o r e : Ms. B: In the Chinese f a m i l y , t h e r e i s a r e s p o n s i b i l i t y t h a t i f somebody i s your r e l a t i v e , p a r t i c u l a r l y your parents, you have to look a f t e r them i n t h e i r o l d age whether or not t h e r e are s o c i a l s e r v i c e s . They have r a i s e d you and t h e r e i s an o b l i g a t i o n . As a parent you must do e v e r y t h i n g p o s s i b l e to g i v e your c h i l d r e n advantages i n l i f e , l i k e education, so c h i l d r e n then have an o b l i g a t i o n t o t h e i r p a r e n t s . Mrs. E: That's j u s t what I would do f o r her ... i t i s not r e a l l y out of duty, not because I f e l t I had t o but more t h a t I want t o . Mr. C: I t i s my time to pay my dues. They took a chance f o r my b e t t e r f u t u r e when they came to Canada... i t f e e l s good to g i v e back a l i t t l e b i t ... I have the o p p o r t u n i t y t o a c t u a l l y h e l p them out, whereas look what they d i d f o r me. The informant w i t h the lowest EIQ score a l s o d i s p l a y e d r e c i p r o c i t y but more from h i s a c t i o n s r a t h e r words. For the 65 informants to reciprocate or "pay t h e i r dues", they had to reorganize t h e i r everyday l i v e s and s h i f t obligations. For the f i f t h informant, caregiving was a burden. He f e l t a sense of rec e i p r o c i t y toward the mother, but not toward the patient. This lack of r e c i p r o c i t y may be the result of the l i m i t e d "giving" done by the patient toward the informant i n the past. Informants did not describe any formal planning for determining how the demands would be d i s t r i b u t e d among the various family members. Rather, the d i s t r i b u t i o n of r e s p o n s i b i l i t i e s just " f e l l into place". Immediate family members pulled together i n i t i a l l y to share the load. The spouse was the main caregiver unless the spouse was deceased. In t h i s case, daughters or daughters-in-law took turns being the caregivers. The sons i n the family also assisted. Sons' involvement varied depending on t h e i r family demands. Those with perceived greater family demands, such as running a business and r a i s i n g a family, were less l i k e l y to be involved with providing care to the patient. In two families (B and C) t h e i r a c t i v i t i e s were more directed at giving f i n a n c i a l assistance and spending time together with the patient: Mr. C: He (the t h i r d son) comes by to v i s i t and t a l k to my dad and say "how i s i t going, do you need any money or whatever offers as much as he can — with two kids and a wife and a business how much time does he have l e f t i t i s very minimal. In contrast, one informant (the eldest son) took a leave of absence from his place of employment while his mother 66 remained at her f u l l - t i m e p o s i t i o n . This son was not married and l i v e d at home with the patient and mother. The mother and son shared most of the demands, although other immediate family members par t i c i p a t e d i n sharing r e s p o n s i b i l i t i e s : Mr. F: My younger brother does a l l the purchasing and my mom tends around the house. She works during the day. One brother just graduated so he hasn't had much time, but he s i t s beside dad's bedside and talks to him. I guess I do everything else. Sharing r e s p o n s i b i l i t i e s encompassed both family demands and caregiving demands: Mr. F: I take Dad to see the physician and do errands for him l i k e picking up his medications ... I do some of the physical things for him that he might not be able to do anymore around the house. Although the informant was the caregiver during the day, he s t i l l viewed his mother as the "main" caregiver. Sons shared i n other r e s p o n s i b i l i t i e s such as advising or persuading the patient to accept the families' plan for him/her: Mr., C: My Dad goes to him (the t h i r d son) for advice, l i k e should I take the surgery or not. Once he (the son) said yes, that was i t — the decision i s made. There i s no question about i t . Being the eldest son i n the family did not play a part i n the d i v i s i o n of the r e s p o n s i b i l i t i e s or t h e i r role, although the significance of t h i s p osition i n the family matrix i n the Chinese culture was acknowledged by the two male informants scoring highest on the EIQ: Mr. C: The eldest brother l i v e s i n the Orient so he i s not that i n f l u e n t i a l but often the eldest i s the spokesperson for the family after the 67 f a t h e r . I don't t h i n k my o l d e s t b r o t h e r would be i f he was here because my f a t h e r and the t h i r d one down get along, they c l i c k . While the second informant (the only son) was aware of the t r a d i t i o n , he d i d not a s s o c i a t e h i s r o l e as spokesperson f o r the f a m i l y t o be i n f l u e n c e d by h i s placement i n the matr i x . Rather, h i s r e s p o n s i b i l i t i e s w i t h i n the f a m i l y evolved because of h i s command of the E n g l i s h language and the f a c t t h a t h i s parents spoke l i t t l e E n g l i s h and t h a t h i s o l d e r s i s t e r l i v e d i n no r t h e r n B r i t i s h Columbia. P r i o r t o g e t t i n g married and moving, h i s s i s t e r was c o n s i d e r e d the spokesperson. I n c l u s i o n o f the p a t i e n t s i n p l a n n i n g t h e i r own care was not e v i d e n t . The m a j o r i t y (4/6) of the informants (the c h i l d r e n ) i m p l i e d t h a t i t was the r o l e o f the f a m i l y t o make the d e c i s i o n s f o r the p a t i e n t and t o act as an in t e r m e d i a r y between the p h y s i c i a n and the p a t i e n t . In some of the f a m i l i e s , the p h y s i c i a n informed the f a m i l y , but not the p a t i e n t , about the p a t i e n t ' s c o n d i t i o n , p r o g n o s i s and f u t u r e treatment o p t i o n s . I t became the f a m i l y ' s r e s p o n s i b i l i t y t o inform the p a t i e n t when the f a m i l y determined t h a t was s u i t a b l e : Mr. C: ...so the docto r t o l d us t h a t s i n c e he i s p h y s i c a l l y a l i t t l e b i t s t r o n g e r he c o u l d o f f e r him the surgery t o t r y t o take as much of the cancer out as p o s s i b l e . At t h a t time we had t o l e t him know t h a t he had cancer because i t i s h i s l i f e and i t i s only f a i r t o t e l l him. The i n f o r m a t i o n was a l s o r e s t r i c t e d t o only the p o s i t i v e i n an attempt t o persuade or p r o t e c t the p a t i e n t : Mr. C: As a f a m i l y , as a son, we t a l k e d t o him and say i t (surgery) i s r e a l l y good t o have a 68 chance and the doctor say — we j u s t t o l d him the good p a r t . We d i d n ' t say t h a t we r e a l l y wanted him t o have the surgery... In a d d i t i o n , from the p e r s p e c t i v e of some of the informants, t h e i r f a m i l i e s attempted t o c o n t r o l the p a t i e n t ' s a c t i v i t i e s as a means of g i v i n g a s s i s t a n c e or p r o t e c t i n g the person. However, f r e q u e n t l y the p e r s o n a l s t y l e of the p a t i e n t i n t e r f e r e d w i t h t h e i r p l a n s : Ms. B: "Because she (the p a t i e n t ) i s very stubborn and she doesn't t h i n k she i s as i l l as she i s p a r t l y because we haven't t o l d her I suppose but she i s very stubborn. She was t r y i n g t o go t o the bathroom and f e l l even though we t o l d her not to stand up s t r a i g h t but to crawl out t o the c h a i r here. When attempting to a l t e r the p a t i e n t ' s d i e t a r y i n t a k e to reduce the problem of c o n s t i p a t i o n , one informant commented: Mr. F: He i s stubborn ... he has h i s ways and no matter how you t r y t o maybe ask him to sway t o your way of t h i n k i n g , they won't do i t . J u s t won't do i t u n l e s s they are r e a l l y i n p a i n and t h a t i s t h e i r l a s t r e s o r t . Sharing the l o a d a l s o meant g i v i n g emotional support t o the p a t i e n t and other f a m i l y members. Family members engaged i n v a r i o u s a c t i v i t i e s t o p r o v i d e t h i s support. Two common a c t i v i t i e s were spending time t o g e t h e r as a f a m i l y and t a k i n g t u r n s : Ms. B: My Mother wants everybody to come every day to see her. Everybody s i t s and t a l k s t o her, even a l l the g r a n d c h i l d r e n . Mr. C: The f a m i l y s t a y s c l o s e t o g e t h e r . That r e a l l y h e l p s . On Sundays, we get t o g e t h e r and we see t h a t they (the parents) don't have any p l a c e t o go so we take them f o r a d r i v e and then we a l l go out f o r d i n n e r . Mr. C: We take t u r n s t a k i n g them (the p a t i e n t and Mother) f o r a d r i v e to v a r i o u s c i t i e s or one of us takes Dad where he wants to go 69 and we t r y t o cheer him up a b i t . My s i s t e r takes mom shopping and t h i s g i v e s her a break. To accommodate these a c t i v i t i e s , other f a m i l y o b l i g a t i o n s were s h i f t e d e i t h e r to other f a m i l y members or were put a s i d e : Ms. B: Before my Mother became s i c k , everybody was very busy with t h e i r own f a m i l i e s . Since she became i l l , everybody comes over to my p l a c e every n i g h t t o see her. T h i s has been a change f o r them. One s i s t e r comes from o u t s i d e Vancouver each n i g h t . Some d i f f e r e n c e s e x i s t e d i n terms of how f a m i l i e s shared concerns w i t h each other and the p a t i e n t . Those f a m i l i e s who had w i t h h e l d the d i a g n o s i s from the p a t i e n t d i d not openly d i s c u s s t h e i r f e a r s and w o r r i e s with the p a t i e n t but sought t h i s support from the other f a m i l y members. They d i d , however, spend i n c r e a s i n g time with the p a t i e n t to o f f e r moral support and reassurance t h a t h i s / h e r c o n d i t i o n would get " b e t t e r soon" as a way of r e d u c i n g the p a t i e n t s ' worry. Those f a m i l i e s whose i l l f a m i l y member was aware of the d i a g n o s i s and the i n e v i t a b i l i t y of the d i s e a s e , spent a d d i t i o n a l time to g e t h e r as a f a m i l y , and the f a m i l y as a whole d i s c u s s e d t h e i r f e e l i n g s more openly. The informants d e s c r i b e d t h a t t h e i r f a m i l y members gave a s s i s t a n c e t o the p a t i e n t by o f f e r i n g hope and by being p o s i t i v e , u s i n g d i s t r a c t i o n as a way of a s s i s t i n g the p a t i e n t t o pass time, o f f e r i n g advice and f i n a n c i a l support: Mr. F: One p o s i t i v e aspect of our f a m i l y i s t h a t we tend t o be p o s i t i v e . We are always t h i n k i n g t h a t t h e r e are other ways. I t h i n k t h i s h e lps Dad keep up hope. Mr. C: When I see him g e t t i n g down, doing noth i n g I mention t h a t maybe he should go t o p l a y MJ . 70 w i t h h i s f r i e n d s . Mr. C: Because everyone i s concerned, we each c h i p i n a l i t t l e t o send them on a l i t t l e t r i p or pay the b i l l s so they don't worry. For one informant, g i v i n g a s s i s t a n c e t o the p a t i e n t meant a l t e r i n g her s l e e p i n g r o u t i n e s : Mrs. D: My husband wanted me t o s l e e p out on the s o f a i n the l i v i n g r o o m so t h a t he would f e e l secure. He was s i t t i n g up a l l n i g h t because every time he l a i d ( s i c ) down, he was coughing a l o t so he s l e p t i n the lazyboy my nephew j u s t bought him. The f a m i l y members a l s o shared the l o a d i n b a l a n c i n g everyday f a m i l y r e s p o n s i b i l i t i e s with care demands. P u l l i n g t o g e t h e r enabled them t o d i s t r i b u t e the r e s p o n s i b i l i t i e s by s h a r i n g , t a k i n g t u r n s , and s h i f t i n g o b l i g a t i o n s : Mr. C: Mom u s u a l l y goes and p i c k s up the g r o c e r i e s i n Chinatown, she s t i l l does the cooking, we share the washing. Whoever needs something washed they do i t . I h e l p c l e a n up the house a b i t and do the yard work. The sons have more r e s p o n s i b i l i t y i n r e l a t i o n t o f i n a n c e s and house maintenance l i k e taxes and b i l l s . My s i s t e r h e lps d r i v e them p l a c e s and takes them out i f Dad i s up to i t . I don't mind t a k i n g time o f f work to t r a n s l a t e but u s u a l l y my s i s t e r does t h a t . Dad helps b a b y s i t the g r a n d c h i l d r e n . He walks them to p l a y s c h o o l two b l o c k s away. Mrs. E: My b r o t h e r leaves h i s b u s i n e s s at noon and goes over to see mom (the p a t i e n t ) and takes her g r o c e r i e s or does what's needed around the house. For the informant, with no c h i l d r e n of her own to help, s h a r i n g the r e s p o n s i b i l i t i e s was accomplished with a s s i s t a n c e from extended f a m i l y on both s i d e s of the f a m i l y . Nieces, nephews, t h e i r spouses, and a s i s t e r - i n - l a w a r r i v e d t o g i v e a s s i s t a n c e . To most of these f a m i l y members, p a r t i c i p a t i n g i n s h a r i n g the l o a d meant s h i f t i n g t h e i r own f a m i l y 71 r e s p o n s i b i l i t i e s , t a k i n g a leave from t h e i r employment, and e x p e r i e n c i n g f i n a n c i a l s t r a i n t o pay f o r the f l i g h t s (from e a s t e r n Canada and the U n i t e d States) and the h o t e l c o s t s . T h e i r presence, however, i n c r e a s e d the number of c a r e g i v e r s and enabled the informant to manage more e a s i l y the care demands as the p a t i e n t ' s c o n d i t i o n d e t e r i o r a t e d . Sharing the l o a d continued when the p a t i e n t was admitted t o h o s p i t a l . For most (4/6) f a m i l y members, the c a r e g i v i n g demands changed from p r o v i d i n g t o t a l care to g i v i n g emotional support and t r a n s l a t i n g . To accommodate a c t i v i t i e s a s s o c i a t e d w i t h a n t i c i p a t i n g and g i v i n g a s s i s t a n c e , the f a m i l y members took t u r n s s t a y i n g with the p a t i e n t i n the h o s p i t a l . For Family A, g i v i n g a s s i s t a n c e became minimal once the p a t i e n t was admitted i n t o the h o s p i t a l . In c o n t r a s t , f o r the s i x t h informant, the c a r e g i v i n g demands remained heavy even when the p a t i e n t was being cared f o r i n the h o s p i t a l . To honor the p a t i e n t ' s wish t o have her daughter care f o r her, the informant s h i f t e d her f a m i l y o b l i g a t i o n s t o be at the h o s p i t a l at s i x o'clock every morning to care f o r her. She shared t h i s r e s p o n s i b i l i t y w i t h other immediate and extended f a m i l y members. Her f a m i l y r e s p o n s i b i l i t i e s were postponed u n t i l she r e t u r n e d while her c h i l d r e n were at s c h o o l . When they came home, they took t u r n s watching the s t o r e while the informant prepared foods to take t o the h o s p i t a l and l a t e r , s e t t l e d the p a t i e n t f o r the n i g h t . T h i s same j u g g l i n g was r e q u i r e d f o r two other informants when the p a t i e n t was i n h o s p i t a l . For one, having the p a t i e n t i n the h o s p i t a l meant i g n o r i n g f a m i l y demands: 72 Mrs. E: For me, the k i d s were secondary, the home, everybody was. T h i s i s the way I see i t . The b i g g e s t p o r t i o n of my time was spent i n the h o s p i t a l keeping her company. Family members took t u r n s keeping the mother company. The j u g g l i n g t h a t was r e q u i r e d t o remain w i t h the p a t i e n t i n the h o s p i t a l i s e v i d e n t i n the f o l l o w i n g e x e r p t : Mrs. E: My b r o t h e r came from the S t a t e s because he i s not working. He came f o r a week or so at a time to do what he c o u l d to h e l p . My second b r o t h e r would drop him o f f i n the morning as he went to work then he would p i c k him up at the h o s p i t a l at noon and I would go t o the h o s p i t a l . I had t o e i t h e r drop the k i d s o f f at a b a b y s i t t e r or take them t o the h o s p i t a l . There were never any p a r k i n g s p o t s . I would stay w i t h her u n t i l e leven p.m. Sometimes when my younger b r o t h e r gets o f f work at f o u r p.m. he goes down u n t i l about dinner time and then I take over. My husband would take care of the k i d s then. Resourcing Resourcing i s the f i n a l management s t r a t e g y of the b a l a n c i n g p r o c e s s . By use of t h i s s t r a t e g y the f a m i l i e s u t i l i z e d r esources from the community at l a r g e . These resources i n c l u d e d 1) extended f a m i l y members; 2) s o c i a l network of f r i e n d s , church group, and work a s s o c i a t e s ; 3) n o n p r o f e s s i o n a l h e a l e r s , such as Chinese f o l k d o c t o r s / h e r b a l i s t s ; 4) western h e a l t h care p r o f e s s i o n a l s ; and 5) i n f o r m a t i o n from books, magazines, and newspaper a r t i c l e s . The a c t i v i t i e s t h a t c h a r a c t e r i z e r e s o u r c i n g were g e t t i n g a s s i s t a n c e , seeking a s s i s t a n c e , and t r y i n g out. These a c t i v i t i e s c o u l d be undertaken simultaneously, but the onset and l e n g t h of d u r a t i o n of each v a r i e d among the f a m i l i e s . In a l l f a m i l i e s , a s s i s t a n c e was o f f e r e d by extended f a m i l y members, f r i e n d s , and church members i n the form of 73 i n f o r m a t i o n r e l a t i n g t o i l l n e s s management, advice, p r a c t i c a l a s s i s t a n c e , and emotional support: Mr. F: My aunt c a l l s maybe twice a day and she i s very h e l p f u l . She g i v e s a l o t of support emotional and p h y s i c a l support. A l s o , the peers at the church (Protestant) attended by my b r o t h e r are very h e l p f u l . They drop by and g i v e l o t s o f support. They ask i f t h e r e ' s anything they can g i v e . A l s o f r i e n d s come over as soon as we l e t them know t h a t something was wrong. Mrs. D: Well, the g r a t i f y i n g t h i n g i s t h a t a l l my f r i e n d s have been very h e l p f u l and I have two n i e c e s from U n i t e d S t a t e s and they have been f l y i n g back and f o r t h t o help out. Mrs. D: My f r i e n d s are very good. They always say, don't f o r g e t i f you need any r i d e s or anything p l e a s e t e l l us .... and they feed me and B. [the p a t i e n t ] because you know, I've been l i v i n g i n Hong Kong f o r q u i t e some time and I d i d n ' t have t o do any cooking... Mr. F: My Mom i s r e a l l y r e l i g i o u s (Buddhist). She i s a s k i n g f o r a l o t , maybe mental support from her b e l i e f s . I t h i n k i t helps her a b i t . Mr. C: My parents had a chance t o bump i n t o a few church ( C a t h o l i c ) persons so they came over and v i s i t e d . They r e l i e v e d the p r e s s u r e f o r my mom so my mom j o i n e d the church. They are r e a l l y f r i e n d l y , and they t a l k about l i f e so i t makes her s t r o n g e r — you see l i f e d i f f e r e n t l y . Family members p e r c e i v e d the p e r s o n a l support they r e c e i v e d from the community was hampered, at times, by the p a t i e n t ' s s t y l e and by the f a m i l y members' sense of o b l i g a t i o n : Mr. C: A c t u a l l y my dad was not too keen on the church ( C a t h o l i c ) at a l l and he j u s t stayed away. He found them b o r i n g but I guess i t i s p a r t l y c u l t u r e . I t h i n k i t may be too we s t e r n i z e d ... he i s d e f i n i t e l y Buddhist. So i s my mom but she found the church s u p p o r t i v e . But, because of my dad, she f e e l s she should be at home wit h him so she couldn't a t t e n d r e g u l a r l y . F r i e n d s a s s i s t e d by p r o v i d i n g i n f o r m a t i o n about d i e t s and the use o f v a r i o u s herbs. F r i e n d s "with c o n n e c t i o n s " were sought 74 t o a s s i s t i n l o c a t i n g the a p p r o p r i a t e resources needed: Mrs. D: One of my f r i e n d s was supposed t o g i v e me an answer ( f o r l o c a t i n g a male aide or nurse who was s t r o n g enough t o help) because she has q u i t e a b i t of connections w i t h the medical f i e l d . . . Mrs. D: A f r i e n d of mine who i s a well-known nurse from a l o c a l g e n e r a l h o s p i t a l t o l d me t o t r y Korean ginseng because i t h e l p s . I had heard the same t h i n g so now I am brewing t h a t f o r him. The use of "connections" was d e s c r i b e d most e x p l i c i t l y by the spouse informant who had r e c e n t l y (ten years ago) r e s i d e d i n Hong Kong. Seeking a s s i s t a n c e was used when i t was determined through "gauging" t h a t a d d i t i o n a l a s s i s t a n c e from the community at l a r g e was r e q u i r e d i n " b a l a n c i n g " the two s e t s of demands. The a s s i s t a n c e was d i r e c t e d at both c a r e g i v i n g and f a m i l y demands. For example, t h r e e f a m i l i e s (A, B, and E) sought homemaker a s s i s t a n c e t o perform a c t i v i t i e s of d a i l y l i v i n g f o r the p a t i e n t and t o complete housekeeping t a s k s . For one informant, h i r i n g a homemaker f o r f o u r hours a day, f i v e days a week p r o v i d e d her with the resources f o r b a l a n c i n g her mother's c a r e g i v i n g demands and the demands of managing her s t o r e u n t i l her c h i l d r e n came home from s c h o o l . S i m i l a r l y , f o r the second daughter informant, having the a s s i s t a n c e of a homemaker enabled her t o d i r e c t her a t t e n t i o n t o f a m i l y demands. In c o n t r a s t , one informant was o f f e r e d homemaker a s s i s t a n c e but r e f u s e d even though her f r i e n d s and h e a l t h care p r o f e s s i o n a l s attempted to persuade her because she f e l t t h a t she and her extended f a m i l y were managing. Only 75 when she h e r s e l f determined the need d i d she ask f o r a s s i s t a n c e from o u t s i d e the f a m i l y . F a m i l i e s sought a s s i s t a n c e from h e a l t h care p r o f e s s i o n a l s when s p e c i f i c e x p e r t i s e was r e q u i r e d . For example, Home Care nurses were u t i l i z e d by fou r informants t o pr o v i d e i n f o r m a t i o n r e g a r d i n g symptom management, t o tea c h the f a m i l y members how to perform treatment regimens, and t o c a r r y out treatment regimens. Informants d e s c r i b e d a l a c k of awareness o f simple techniques f o r accommodating c a r e g i v i n g demands. To one informant, t h i s l a c k o f knowledge r e s u l t e d i n unnecessary h a r d s h i p : Mrs. D: The hardest p a r t was d u r i n g t h i s l a s t p e r i o d j u s t b e f o r e he was taken t o h o s p i t a l . I was g e t t i n g him up from the bed and h e l p i n g him to the bathroom. He always put h i s arms around my neck. Then my n i e c e taught me how to get him up without doing t h a t . I d i d n ' t know t h a t t h e r e was a d i f f e r e n t way of doing i t t h a t was so much e a s i e r on me. P r o v i s i o n of these b a s i c i n s t r u c t i o n s r e g a r d i n g t r a n s f e r s and m o b i l i z a t i o n had not been p r o v i d e d t o her by h e a l t h care p r o f e s s i o n a l s i n the community such as home care nurses, o c c u p a t i o n a l and p h y s i o t h e r a p i s t s . In most cases (4/5), the f a m i l i e s who got a s s i s t a n c e from these h e a l t h care p r o f e s s i o n a l s were not aware of t h i s s e r v i c e u n t i l the f a m i l y p h y s i c i a n r e f e r r e d them. Home care was not sought f o r the purposes of p r o v i d i n g emotional support t o f a m i l y members. Only one informant o f the four who had used Home Care s e r v i c e s p e r c e i v e d t h e i r a s s i s t a n c e t o be s u p p o r t i v e . A s s i s t a n c e was a l s o sought from other h e a l t h care p r o f e s s i o n a l s , such as s o c i a l workers, t o organize homemaker 76 s e r v i c e s . A t t i m e s f a m i l y members were u n c e r t a i n what t y p e o f r e s o u r c e s t o r e q u e s t u n t i l t h e y " l e a r n e d t h e system": Mr. A: I had t a l k e d t o t h e s o c i a l worker but I d i d not know any b e t t e r so I had asked f o r homemaker h e l p f o r my Dad when I s h o u l d have asked f o r . h e l p f o r my Mom. I was s o r t o f l e a r n i n g a t t h a t p o i n t . I n e v i t a b l y , d u r i n g t h i s l e a r n i n g phase, f a m i l y members were under p r e s s u r e t o manage t h e c a r e g i v i n g demands and y e t t o c o n t i n u e b a l a n c i n g f a m i l y demands. In a d d i t i o n , h a v i n g d i f f e r e n t s o c i a l workers i n t h e community and i n t h e h o s p i t a l o r g a n i z i n g f o r home s u p p o r t p r e s e n t e d i t s own d i f f i c u l t i e s when C h i n e s e - s p e a k i n g spouses made t h e arrangements w i t h o u t t h e i n v o l v e m e n t o f E n g l i s h - s p e a k i n g c h i l d r e n . One i n f o r m a n t s u g g e s t e d t h a t c o o r d i n a t i n g r e s o u r c e s would be f a c i l i t a t e d i f t h e same h e a l t h c a r e p r o f e s s i o n a l s f u n c t i o n e d b o t h i n t h e h o s p i t a l and home s e t t i n g . I n f o r m a n t s c o n s i s t e n t l y r e f e r r e d t o t h e p h y s i c i a n s ' r o l e i n p r o v i d i n g r e s o u r c e s . F a m i l i e s r e l i e d on f a m i l y p h y s i c i a n s and s p e c i a l i s t s t o gu i d e many o f t h e i r a c t i o n s p e r t a i n i n g t o t h e d i s e a s e and t r e a t m e n t management. P h y s i c i a n s were p e r c e i v e d t o be t h e " e x p e r t s " a l t h o u g h t h e y were not always p e r c e i v e d as b e i n g s u p p o r t i v e : Mr. C: I found t h e p h y s i c i a n s t o be more m e c h a n i c a l t h a n t h e n u r s e s . They g i v e you an answer and t h e i r a n a l y s i s and t h e n i n a c o u p l e o f minutes t h e y a re gone. They a r e not as f r i e n d l y o r c a r i n g . I n f o r m a n t s ' p e r c e p t i o n o f t h e p h y s i c i a n s ' r o l e v i s - a - v i s t h e n u r s e s ' r o l e i n h e l p i n g t h e i r f a m i l i e s r e v e a l e d l i m i t e d u n d e r s t a n d i n g : 77 Mr. F: Well, p h y s i c i a n s do the decision-making and the nurses are — you know, they tend t o make t h i n g s a b i t e a s i e r , t h a t s o r t of t h i n g . The nurses' r o l e i n the h o s p i t a l was b e t t e r understood than t h e i r r o l e i n the community. Nurses' p a t i e n c e , c a r i n g , r e s p e c t f u l treatment o f a p a t i e n t as an i n d i v i d u a l , and t a k i n g time t o answer f a m i l y members' ques t i o n s and p r o v i d e t o i n f o r m a t i o n requested, compassion and f r i e n d l i n e s s , p aying a t t e n t i o n t o the p a t i e n t and t a k i n g time t o care f o r the p a t i e n t s were a l l p e r c e i v e d as h e l p f u l . The language b a r r i e r was i d e n t i f i e d as p r e s e n t i n g the g r e a t e s t d i f f i c u l t y i n seeking resources and communicating wi t h resource p e r s o n n e l . I n a b i l i t y t o communicate wi t h Chinese f a m i l y members, i n c l u d i n g the p a t i e n t , was o f t e n d e s c r i b e d as a reason f o r misunderstandings between p a t i e n t s , f a m i l y members and resource p e r s o n n e l : Mrs. E: I f a Canadian or an E n g l i s h - s p e a k i n g homemaker was sent t o h e l p her (the p a t i e n t ) , i t would be u s e l e s s . I t s l i k e b e i n g i n the h o s p i t a l a gain. Because of the communcation problems, they c o u l d not h e l p her wit h what she needs. /An a c t i v i t y o f r e s o u r c i n g t h a t was c o n s i d e r e d by the informants t o be c u l t u r a l l y based i n v o l v e d t r y i n g out numerous a l t e r n a t i v e s i n the hope of f i n d i n g something t h a t "worked" t o a l l e v i a t e the cause of the i l l n e s s . T h i s p a t t e r n of t r y i n g out was one of t r i a l and e r r o r aimed at a l t e r i n g the symptoms e i t h e r by red u c i n g the p r o g r e s s i o n of the di s e a s e or by i n c r e a s i n g the p a t i e n t s ' r e s i s t a n c e t o the d i s e a s e . In the process o f attempting t o strengthen the p a t i e n t ' s p h y s i c a l w e l l b e i n g , h i s / h e r emotional w e l l b e i n g was strengthened. 78 T r y i n g out i n v o l v e d u s i n g v a r i o u s remedies or herbs t h a t had d e r i v e d t h e i r r e l e v a n c e from d i r e c t e x perience: Mr. C: ...one of my f r i e n d s has experience w i t h h i s s i s t e r who has cancer i n Hong Kong. I mentioned to him t h a t my f a t h e r has cancer and he was r e a l l y concerned. He had paper c l i p p i n g s of d i f f e r e n t medicines and s t u f f t h a t we can do. He sent i t t o me and we l e t dad read i t a b i t and then we t r i e d d i f f e r e n t medicines and herbs. The i n f o r m a t i o n commonly o r i g i n a t e d from newspapers, books, and hearsay from r e l a t i v e s and f r i e n d s . The reasons g i v e n f o r t r y i n g v a r i o u s remedies r e f l e c t e d the f a m i l y members' hope t h a t one would "cure": Mr. F: Well, ginseng i s a s t i m u l a n t and i t helps the b l o o d c i r c u l a t i o n I guess. My Mom heard a l o t about how ginseng can cure cancer from her f r i e n d s . Ginseng was t r i e d by a l l p a t i e n t s . The informant s c o r i n g h i g h e s t on the EIQ prepared ginseng f o r the p a t i e n t t o s a t i s f y her sense of o b l i g a t i o n and obedience toward her: Ms. B: I cook the ginseng soup everyday. I don't know what k i n d of medicine i t i s but my mother t e l l s me t o do i t and I j u s t do. A herb was taken as long as i t was judged to be s u c c e s s f u l . T h i s "success" was o f t e n based on the p a t i e n t s ' p e r c e p t i o n : Mr. A: ...he (the p a t i e n t ) t h i n k s i t works so t h a t i s why he keeps t r y i n g them. He has seen Chinese h e r b a l d o c t o r s , gone to medicine shops, t r i e d v a r i o u s types of ointments, tapes, you name i t . He's t r i e d most of them. I t was d i s c o n t i n u e d when i t was no longer deemed e f f e c t i v e or when the r i s k s c o u l d f u r t h e r d i s r u p t the p a t i e n t s ' h e a l t h : Mrs. D: I stopped g i v i n g him the ginseng about two months ago because he was b e g i n n i n g to cough and a c c o r d i n g to the Chinese h e r b a l i s t when a person coughs or has a c o l d , don't g i v e them 79 Korean ginseng. When t h i s occurred, other types of herbs were t r i e d although the informant was h e s i t a n t about d i s c u s s i n g t h i s p r a c t i c e . C o n t i n u i n g t o t r y a l t e r n a t i v e s o f f e r e d the p a t i e n t and the f a m i l y hope and a sense of s e c u r i t y or c o n t r o l over the s i t u a t i o n . Taking a c t i o n meant t h a t the f a m i l y members were doing something t o improve the person's c o n d i t i o n when western d o c t o r s had no t h i n g t o o f f e r : Mrs. D: We were hoping t h a t t h e r e would be something t h a t the do c t o r s at the h o s p i t a l s c o u l d do but i t seemed t h a t they agreed t h a t n o t h i n g would help i t so they d i d n ' t g i v e him any medication so he j u s t came home and I s t a r t e d g i v i n g him Chinese herbs. By u s i n g herbs, the f a m i l y members l e s s e n e d t h e i r f e a r s t e m p o r a r i l y . Most p a t i e n t s had t r i e d v a r i o u s herbs b e f o r e b e i n g diagnosed with cancer. T h e i r p a t t e r n of behaviour changed f o l l o w i n g d i a g n o s i s . I n c r e a s i n g numbers of d i f f e r e n t herbs were t r i e d as the p a t i e n t s ' c o n d i t i o n d e t e r i o r a t e d and none were found t o be e f f e c t i v e . T r y i n g out was a l s o used i n seeking advice r e g a r d i n g treatment a l t e r n a t i v e s from Chinese f o l k d o c t o r s or h e r b a l i s t s and western p h y s i c i a n s : Mr. A: He (the p a t i e n t ) takes herbs and s t u f f concurrent with western treatments. He downgrades the medicine treatments from the community. He goes t o h i s f a m i l y d o c t o r r e g u l a r l y t o get p r e s c r i p t i o n s t o see what the docto r can do f o r him and he goes t o the h e r b a l i s t t o o . Mr. F: ...when I ask the do c t o r s t o maybe t r y d i f f e r e n t t h i n g s , they tend t o l i s t e n and t r y d i f f e r e n t treatments or medi c a t i o n s . Mrs. D: A f t e r t e n days i n the h o s p i t a l and he came home without any medication or anything so we 80 applied to the cancer agency here i n our area to see i f they would give him something, some medication. They looked him over and didn't give him any medication either. The a c t i v i t y of t r y i n g out increased caregiving r e s p o n s i b i l i t i e s for family members. Purchasing and preparing the various remedies were costly and time consuming: Mrs. D: The one herb that i s l i k e a worm and the dried abalone are darned expensive, I ' l l t e l l you. Ms. B: I cooked up a soup of many Chinese mushrooms, abalone and the herbs every morning before I went to the hospital at 6 a.m. However, the a c t i v i t i e s were not perceived as added "burden" by the informants. Summary The conceptualization of the balancing process was based upon one family member's perception of how t h e i r family functioned. The balancing process was used by the Chinese families i n balancing the demands of caregiving and everyday family l i f e . The four management strategies of gauging, anticipating, sharing the load, and balancing were used i n t h i s process. Common a c t i v i t i e s characterized each strategy. Gauging consisted of a c t i v i t i e s associated with judging the patients' condition and the families' a b i l i t i e s to manage the demands at hand. Family members were constantly gauging which began at the onset of the balancing process and continued u n t i l death. Gauging a c t i v i t i e s became routine when the patients' condition was perceived by the families as stable. When there was evidence of deterioration, worry increased and gauging i n t e n s i f i e d . Information provided by friends, family members and the physician were used to give 81 meaning t o the p a t i e n t s ' behaviours. A n t i c i p a t i n g enabled the f a m i l y members t o ga i n some c o n t r o l over the s i t u a t i o n and prepared them f o r b a l a n c i n g a d d i t i o n a l r e s p o n s i b i l i t i e s . Being nearby and ready l e s s e n e d t h e i r a n x i e t y and t h e i r f e e l i n g o f h e l p l e s s n e s s . By g i v i n g forethought t o the f u t u r e , they were able t o make allowances and b e g i n t o prepare f o r i n e v i t a b l e f u t u r e events, such as h o s p i t a l i z a t i o n and the p a t i e n t s ' death. Sharing the l o a d r e q u i r e d constant j u g g l i n g of f a m i l y members' time and f a m i l y r e s p o n s i b i l i t i e s . Through a c t i v i t i e s such as p u l l i n g together, t a k i n g t u r n s , s h a r i n g r e s p o n s i b i l i t i e s , s h i f t i n g o b l i g a t i o n s , g i v i n g a s s i s t a n c e , and spending time together, the f a m i l i e s f a c i l i t a t e d the b a l a n c i n g p r o c e s s . Resourcing a s s i s t e d the f a m i l y t o a c q u i r e a d d i t i o n a l manpower and emotional support i n b a l a n c i n g the c a r e g i v i n g demands and f a m i l y demands. The f a m i l i e s received/sought a s s i s t a n c e from extended f a m i l y , t h e i r s o c i a l network of f r i e n d s and a s s o c i a t e s , and from support s e r v i c e s . They sought a s s i s t a n c e from h e a l t h care p r o f e s s i o n a l s when t h e i r e x p e r t i s e was needed. By t r y i n g out v a r i o u s herbs and treatments, the f a m i l y members p e r c e i v e d themselves as h e l p i n g the p a t i e n t and i n t h i s way o f f e r i n g hope i n an otherwise hopeless s i t u a t i o n . While a l l f a m i l i e s used each s t r a t e g y i n b a l a n c i n g , some v a r i a t i o n s were evident i n the onset and d u r a t i o n of use. These v a r i a t i o n s appeared t o be a s s o c i a t e d w i t h past 82 experiences and s t y l e of p a t i e n t and f a m i l y members. C u l t u r a l i n f l u e n c e s on f a m i l y members' a c t i o n s and reasons g i v e n f o r a c t i o n s were a l s o evident throughout the b a l a n c i n g p r o c e s s . 83 S t y l e and Past Experiences When informants were asked how they and t h e i r f a m i l y members had coped with s i m i l a r s i t u a t i o n s i n the past, they d e s c r i b e d past p a t t e r n s o f coping or behaving ( t h e i r s t y l e ) and past e x p e r i e n c e s . The i n f l u e n c e of the p a t i e n t s ' and f a m i l y members' s t y l e and past experiences was evident throughout the b a l a n c i n g p r o c e s s . For some informants, t h e i r s t y l e or past experiences i n f l u e n c e d how they a c t u a l l y engaged i n b a l a n c i n g . For others, the i n f l u e n c e was l i m i t e d t o p a r t i c u l a r a c t i o n s . The degree of d i s c l o s u r e about t h e i r s t y l e and past experiences v a r i e d . Most informants found i t e a s i e r t o d e s c r i b e the p a t i e n t ' s s t y l e than f a m i l y s t y l e and past e x p e r i e n c e s . The p a t i e n t ' s s t y l e had an i n f l u e n c e i n v a r i o u s ways. For i n s t a n c e , the informants d e s c r i b e d how the p a t i e n t ' s s t y l e was used as the b a s i s o f gauging. As w e l l , knowing the p a t i e n t ' s s t y l e i n f l u e n c e d f a m i l y members' d e c i s i o n s . Those f a m i l i e s who deci d e d t o w i t h h o l d the d i a g n o s i s from the p a t i e n t s d i d so because of what they knew about the p a t i e n t : Ms. B: My Mom i s very nervous. I f I t e l l her she has cancer, she may not want t o l i v e . She w i l l g i v e up and d i e f a s t e r . She always w o r r i e s . Mrs. D: We d i d n ' t - t e l l her because we d i d n ' t know how she was going t o take i t . Because of what we had heard about cancer being a p a i n f u l d i s e a s e , we thought t h a t i f she i s not i n t h a t much pa i n , we wouldn't t e l l her. I t h i n k she would be down a l o t . She always has w o r r i e d a l o t and we don't want t o add to t h a t . The meaning of the d i a g n o s i s t o the f a m i l y members and t h e i r 84 knowledge of the p a t i e n t ' s s t y l e i n f l u e n c e d t h e i r d e c i s i o n -making. In order to p r o t e c t the p a t i e n t s from "worry," they chose to w i t h h o l d the i n f o r m a t i o n . Informants a l s o d e s c r i b e d t h a t the p a t i e n t ' s s t y l e i n c r e a s e d t h e i r work. For example, one p a t i e n t l i k e d meals made "her way." T h i s g e n e r a l l y r e s u l t e d i n f a m i l y members making the "soups" under her d i r e c t i o n even though a homemaker came d a i l y t o a s s i s t w i t h t h i s t a s k . In a d d i t i o n , the s t y l e of some p a t i e n t s helped f a m i l y members maintain hope. For example, one informant d e s c r i b e d the p a t i e n t ' s s t y l e of b e i n g "determined to l i v e " even when faced with the i n e v i t a b l e . She a s s o c i a t e d t h i s w i t h h i s past experience as a "great a t h l e t e where he never gave up." I t helped her m a i ntain hope even though she c o u l d see him change f o r the worse. Another informant remarked t h a t "hearing the p a t i e n t joke" as he had done i n the past reduced t h e i r worry "a l i t t l e . " Some informants d e s c r i b e d f a m i l y and i n d i v i d u a l p a t t e r n s of communicating and showing emotion. What had been used i n the past continued t o be used i n t h i s s i t u a t i o n . Parents who had argued i n the past, continued t o argue. However, one informant d e s c r i b e d a change i n h i s u s u a l manner of d e a l i n g w i t h c o n f l i c t i n the f a m i l y . He d e s c r i b e d "being s u b t l e " and " t h i n k i n g t w i c e " b e f o r e speaking now t h a t h i s f a t h e r had cancer i n order t o p r o t e c t the p a t i e n t and t o reduce the "pressure" p l a c e d on the mother by the other c h i l d r e n ' s problems. Informants who d e s c r i b e d themselves as "keeping f e e l i n g s and problems to themselves" continued to manage the s i t u a t i o n i n the same manner. 85 Two informants d e s c r i b e d the communcation s t y l e of t h e i r f a m i l i e s as the " s t r e n g t h " of the f a m i l y : Mr. C: I t helps t h a t f a m i l y members are not f i g h t i n g w i t h each other and snapping. We t r y t o work t h i n g s out and be l o g i c a l about i t . That i s the s t r e n g t h of t h i s f a m i l y . We stay c l o s e t o g e t h e r . Communicating wi t h each other and s h a r i n g w o r r i e s helped to reduce one informant's w o r r i e s . The f a m i l y ' s s t y l e of b e i n g p o s i t i v e strengthened t h e i r a b i l i t y t o continue to face the s i t u a t i o n with hope: Mr. F: We have always communicated a l o t w i t h each other. I t r e a l l y h e l p s . One p o s i t i v e aspect of our f a m i l y i s t h a t we tend to be p o s i t i v e . We t h i n k t h e r e i s always other ways t o help dad even though i t has gotten to a p o i n t where we are running out of a l t e r n a t i v e s . There s t i l l i s always hope. D i f f e r e n c e s i n i n d i v i d u a l s t y l e s e x i s t e d w i t h i n each f a m i l y . Some members were "the q u i e t type" while others were seen as " p e r s u a s i v e or a d v i s i n g . " To some degree, t h e i r s t y l e i n f l u e n c e d what t h e i r r o l e was i n the b a l a n c i n g p r o c e s s . For example, one informant d e a l t with c a r e g i v i n g demands by o f f e r i n g a d v i c e t o the p a t i e n t as he had i n the p a s t . Family members' s t y l e a l s o i n f l u e n c e d t h e i r r o l e i n decision-making throughout the b a l a n c i n g p r o c e s s . One "wishy washy" f a m i l y member was not r e l i e d on t o a s s i s t with d e c i s i o n s r e g a r d i n g p a t i e n t care nor d i d he i n f l u e n c e the p a t i e n t ' s d e c i s i o n s i n terms of treatment o p t i o n s . Past experiences w i t h managing i l l n e s s i n f l u e n c e d the a c t i o n s c h a r a c t e r i s t i c of r e s o u r c i n g . G e t t i n g and t a k i n g advice from f r i e n d s and f a m i l y members, t r y i n g out, seeking 86 the a s s i s t a n c e of h e r b a l i s t , and g a i n i n g i n f o r m a t i o n from v a r i o u s sources were p r a c t i c e s commonly used i n the p a s t . Past experience w i t h i l l n e s s , i n p a r t i c u l a r w i t h cancer, p l a y e d a r o l e i n how some f a m i l y members experie n c e d the . s i t u a t i o n . Both parents of one f a m i l y member (spouse, Family C) had d i e d o f cancer. The experience she had while c a r i n g f o r her mother became the measure on which she based some of her gauging and a n t i c i p a t i n g . She watched f o r s i m i l a r stages and s i g n s i n the p a t i e n t . To her, because both o f her parents had d i e d from cancer, the d i a g n o s i s of cancer meant "danger." Past f a m i l y r e l a t i o n s h i p s were a l s o found t o i n f l u e n c e the b a l a n c i n g p r o c e s s . For most (5/6) informants, the f a m i l y memories were v a l u e d . One informant d i s c u s s e d the s t r e n g t h t h a t h i s f a m i l y d i s p l a y e d and the "hard work" i t took t o s u r v i v e the problems they faced when immigrating t o Canada. The e f f o r t he expended to' p a r t i c i p a t e i n b a l a n c i n g seemed minimal t o him i n comparison t o past e f f o r t s o f h i s p a r e n t s . In c o n t r a s t , another informant f e l t overwhelmed with n e g a t i v e past experiences t o the p o i n t t h a t he p a r t i c i p a t e d i n b a l a n c i n g r e l u c t a n t l y and d i d so "to help h i s mother." The s i t u a t i o n was c h a r a c t e r i z e d by u n r e s o l v e d c o n f l i c t s , i n t e n s e blaming, and resentment f o r the emotional and p h y s i c a l d r a i n t h a t b a l a n c i n g had on the mother. The p r o t e c t i v e r o l e he maintained toward h i s mother was p r e c i p i t a t e d by h i s p e r c e p t i o n t h a t h i s mother's h e a l t h was a l s o d e t e r i o r a t i n g as a r e s u l t o f cancer. D i f f e r e n c e s e x i s t e d between t h i s f a m i l y and the remaining f a m i l i e s i n the onset and d u r a t i o n of a n t i c i p a t i n g , the amount of resources sought by the f a m i l y 87 and o f f e r e d by others i n r e s o u r c i n g , and the l i m i t e d involvement o f the two c h i l d r e n i n s h a r i n g the load, d i f f e r e n c e s due, a c c o r d i n g t o the informant, t o the " l i m i t e d fondness" f e l t toward the p a t i e n t . C u l t u r a l I n f l u e n c e s T h i s s e c t i o n p r e s e n t s the EIQ r e s u l t s and examines the i n f l u e n c e s o f c u l t u r a l b e l i e f s and p r a c t i c e s and the degree of e t h n i c i d e n t i t y on the b a l a n c i n g process and f a m i l y members' behaviours. E t h n i c I d e n t i t y Q u e s t i o n n a i r e The E t h n i c I d e n t i t y Q u e s t i o n n a i r e was used t o q u a n t i f y the informants' degree of e t h n i c i d e n t i t y or t h e i r o r i e n t a t i o n toward Chinese t r a d i t i o n s and v a l u e s . Higher scores r e p r e s e n t h i g h e r p o s i t i v e Chinese e t h n i c i d e n t i t y or c l o s e r t i e s toward the Chinese c u l t u r e ' s people, behaviours, and i d e a s . Lower scores r e p r e s e n t more openness t o the Canadian c u l t u r e ' s people, t h e i r ideas and behaviour. The continuum of r e l a t i v e attachment t o one's e t h n i c r o o t s t o r e l a t i v e non-attachment, r e f e r r e d t o by Burke and c o l l e a g u e s (1987), ranges from an EIQ score o f 15 t o 60 (each item i s scored 1-4). Informants' T o t a l Scores The continuum r e p r e s e n t e d by the informants' EIQ scores i s i l l u s t r a t e d i n F i g u r e 1. Only f i v e informants' scores are pres e n t e d s i n c e one informant d i d not complete the q u e s t i o n n a i r e . Scores ranged from 33 to 43, wit h a mean of 37.6 (Table 5 ) . Two informants' scores f e l l below the mean 88 and t h r e e above. The standard d e v i a t i o n was 4.1. Three (A, C,E) f e l l w i t h i n 1 standard d e v i a t i o n of the mean, one (F) w i t h i n 0.5 and one w i t h i n 2 standard d e v i a t i o n s o f the mean. Informants who f e l l below the mean p e r c e i v e d themselves as becoming "westernized," although they d i d not expand on what t h i s meant. T h e i r f l u e n c y i n E n g l i s h was e a s i l y understood and both r e c e i v e d most or a l l of t h e i r e d u c a t i o n i n Canada. Although a Chinese d i a l e c t was spoken i n the home, E n g l i s h was spoken among the c h i l d r e n i n the two f a m i l i e s . They d e s c r i b e d themselves as p a r t i c i p a t i n g i n Canadian o r g a n i z a t i o n s or c l u b s . I t i s not known i f Chinese newspapers or t e l e v i s i o n were used i n these two f a m i l i e s . The two informants whose scores were above the mean, d i s p l a y e d g r e a t e r adherence t o Chinese t r a d i t i o n s and valu e s and c l o s e r f a m i l y t i e s than those who scored below the mean. They conversed i n a Chinese d i a l e c t among themselves, read both Canadian and Chinese newspapers, and watched t e l e v i s i o n programs i n both languages. One informant (C) r e c e i v e d most of h i s educ a t i o n i n Canada. The second informant (B) was t a k i n g E n g l i s h and d r i v i n g l e s s o n s . The t h i r d informant (Family A) d e s c r i b e d h i m s e l f as b e i n g "Canadianized," s t a t i n g t h a t he was not t h a t f a m i l i a r w i t h c u l t u r a l t r a d i t i o n s . However, he was able t o d e s c r i b e v a r i o u s b e l i e f s a s s o c i a t e d w i t h h e a l t h and i l l n e s s , such as b a l a n c i n g "too much or too l i t t l e " or "hot and c o l d . " He d e s c r i b e d h i m s e l f as "being too c l o s e t o the s i t u a t i o n " t o see the c u l t u r a l i n f l u e n c e s . He v a l u e d h i s Chinese h e r i t a g e , the language, and the b e n e f i t of some of the t r a d i t i o n a l customs, such as the use of herbs. F E MEAN A,C B —i— 40 —t— 45 — i 1 55 60 Attachment Ethnocentricity 15 20 Non-attachment Lack of Identity with One's Ethnic Roots 25 30 35 33 34 39 37.6 43 50 FIGURE 3 Ethnic Identity Continuum CO TABLE 5 - ETHNIC IDENTITY QUESTIONNAIRE RESULTS FAMILIES RANGE A B C D E F MEAN *EI TOTAL 15 TO 60 39 43 39 NA 34 33 37.6 *EI TOTAL (ITEM #13 OMITTED) 14 TO 56 36 41 37 NA 32 31 35 SOCIAL RELATIONS FACTORS (ITEMS #3,5,6,7,8, 11,12.14) 8 TO 32 24 27 27 NA 19 21 23.6 TRADITIONS & CUSTOMS FACTORS (ITEMS #1,2,4,9,10,15) 6 TO 24 12 14 10 NA 13 10 11.8 * HIGHER TOTALS REPRESENT AN INDIVIDUAL'S HIGHER POSITIVE ETHNIC IDENTITY TOWARD OWN CULTURE'S PEOPLE, BEHAVIORS AND IDEAS. LOWER SCORES REPRESENT A WEAKER TIE TO ONE'S OWN ETHNIC IDENTITY AND MORE OPENNESS TO THE CANADIAN CULTURE'S IDEAS, PEOPLE AND THEIR BEHAVIOR V0 O 91 He intended t o pass on these aspects o f h i s c u l t u r e t o h i s unborn c h i l d . While he had r e c e i v e d h i s educa t i o n i n Canada, h i s E n g l i s h was l e s s c l e a r than informants who a l s o had r e c e i v e d t h e i r e d u c a t i o n i n Canada. He acknowledged the presence o f a " t r a d i t i o n a l Chinese f a m i l y s t r u c t u r e " and suggested t h a t , because of past experiences w i t h the p a t i e n t , he l i v e d apart from h i s f a m i l y . Informants' Scores on F a c t o r s of S o c i a l R e l a t i o n s  and Traditions/Customs Because of the smal l sample s i z e i n t h i s study, f a c t o r a n a l y s i s c o u l d not be completed. While no d e f i n i t i v e c o n c l u s i o n s can be drawn from the EIQ r e s u l t s o f the study, the r e s u l t s p r o v i d e d a means of v a l i d a t i n g what the r e s e a r c h e r saw t o help e x p l a i n s i m i l a r i t i e s and d i f f e r e n c e s among the informants' i n t e r v i e w data. More v a r i a n c e i n degree of ethnocentrism was ev i d e n t between the informants' scores on the two f a c t o r s of s o c i a l r e l a t i o n s and t r a d i t i o n s / c u s t o m s . The r e s u l t s are pre s e n t e d i n Table 5. The scores f o r s o c i a l r e l a t i o n s ranged from 19 (Informant E) t o 27 (Informants B and C). The mean was 24. In c o n t r a s t , the scores f o r the t r a d i t i o n s and customs f a c t o r only ranged from 10 (Informant C and F) to 14 (Informant B), with a mean of 12, i n d i c a t i n g l e s s d i f f e r e n c e among the informants on t h i s f a c t o r . Informant E's r a t i n g on t h i s f a c t o r was c l o s e l y a l i g n e d w i t h t h a t o f Informant B. Both informants were daughters who d i s p l a y e d a st r o n g e r degree of obedience toward the mother (patient) than t h a t o f the other informants. Yet, informant E d e s c r i b e d h e r s e l f as not 92 p r e s c r i b i n g t o the " o l d t r a d i t i o n s " . /Another i n c o n s i s t e n c y i d e n t i f i e d i n the t r a d i t i o n / c u s t o m s scores was informant C's r a t i n g on t h i s f a c t o r . His score was one of the lowest, yet h i s v e r b a l d e s c r i p t i o n s suggested a s t r o n g alignment to t r a d i t i o n s and customs. For example, he d e s c r i b e d h i s performance of r i t u a l s on a r e g u l a r b a s i s such as thanking the gods f o r s a f e t y and good b u s i n e s s , and performing a n c e s t r a l worship. His low score on t h i s f a c t o r may p a r t i a l l y be e x p l a i n e d by the f a c t t h a t he was not always f a m i l i a r w i t h the reasons behind these t r a d i t i o n s . Another p o s s i b i l i t y f o r the incongruency was t h a t the informant, h i m s e l f , d i d not c l o s e l y adhere t o many of these t r a d i t i o n s . He suggested t h a t some of these t r a d i t i o n s would be " l o s t i n h i s g e n e r a t i o n because "the k i d s d i d not take the time t o perform them and are l e s s f a m i l i a r w i t h them." Informants Scores on EIQ S i n g l e Items Examination of the s p e c i f i c item scores (Appendix I) not only v a l i d a t e d v e r b a l i n f o r m a t i o n but a l s o r e v e a l e d d i s c r e p a n c i e s between what the informants s a i d and how they responded t o the EIQ w r i t t e n items. For example, informant E responded by " s l i g h t l y a g r e e i n g " w i t h the statement of b e i n g more Canadian than p a r t of any other c u l t u r e . T h i s score v a l i d a t e d her v e r b a l responses. S i m i l a r l y , informants A, C, B e i t h e r s l i g h t l y d i s a g r e e d or s t r o n g l y d i s a g r e e d with the same statement, again v a l i d a t i n g t h e i r v e r b a l data. Informant F, who d e s c r i b e d h i m s e l f as "becoming wes t e r n i z e d , " responded t o item 8 by s l i g h t l y d i s a g r e e i n g w i t h the statement, thereby 93 not p e r c e i v i n g h i m s e l f more Canadian. I n t e r e s t i n g l y , he scored the lowest on the EIQ. The same incongruency was seen i n how informant F responded t o item e l e v e n . Item ele v e n i s of p a r t i c u l a r i n t e r e s t t o h e a l t h care p r o f e s s i o n a l s and support s e r v i c e s ' p e r sonnel because i t r a t e d the p r e f e r e n c e concerning the c u l t u r a l background of h e a l t h care workers. Informant F s l i g h t l y agreed t h a t he would p r e f e r Chinese h e a l t h care workers, although v e r b a l l y he i n d i c a t e d i t " d i d not matter." The scores f o r the remaining informants on t h i s item confirmed what they r e p o r t e d v e r b a l l y . Informant E a l s o s l i g h t l y p r e f e r r e d Chinese h e a l t h care p r o f e s s i o n a l s . Informants A, B, and C s t r o n g l y d i s a g r e e d , i n d i c a t i n g t h a t they d i d not p r e f e r Chinese h e a l t h care workers. The in c o n g r u e n c i e s between informant F's v e r b a l and w r i t t e n responses may be due t o h i s answering v e r b a l l y i n a s o c i a l l y a c c e p t a b l e manner. The scores on item nine, which r a t e d the degree of r e s p o n s i b i l i t y p e r c e i v e d i n b e i n g Chinese, a l s o v a l i d a t e d the v e r b a l d e s c r i p t i o n s of the informants of what they p e r c e i v e d t o be t h e i r l e v e l o f r e s p o n s i b i l i t i e s . Informants who were the e l d e s t i n the f a m i l i e s (B and F) and the informant (A) who was the only f a m i l y member a v a i l a b l e t o h e l p h i s mother care f o r the p a t i e n t responded e i t h e r by s l i g h t l y a g r e e i n g or by s t r o n g l y a g r e e i n g . The other informants (C, E ) , who responded by s l i g h t l y d i s a g r e e i n g with the statement, had a more equal d i s t r i b u t i o n of r e s p o n s i b i l i t i e s among f a m i l y members. 94 V a r i a b l e s o f P o s s i b l e I n f l u e n c e on R e s u l t s V a r i a b l e s t h a t d i d not appear t o i n f l u e n c e the informants' degree o f e t h n i c i t y were a) l o c a t i o n o f o r i g i n and l e n g t h o f time i n Canada, and b) age and gender, a) L o c a t i o n o f O r i g i n and Length of Time i n Canada The f i r s t two v a r i a b l e s are i l l u s t r a t e d i n F i g u r e 4. N e i t h e r the s i m i l a r i t i e s nor the d i f f e r e n c e s between l o c a t i o n of o r i g i n and l e n g t h of time i n Canada appeared t o i n f l u e n c e the t o t a l EIQ s c o r e s . For example, the EIQ scores o f the two informants (C and F ) , who immigrated from Hong Kong w i t h i n 2 years o f each other, were at opp o s i t e ends of the e t h n i c i d e n t i t y continuum. The informant (A), born i n Canada, scor e d the same as one of the informants (B) from Hong Kong. In a d d i t i o n , informant E, who immigrated from China, s c o r e d w i t h i n 1 p o i n t o f the second informant from Hong Kong (F) although the time between immigration t o Canada d i f f e r e d by 17 y e a r s . The informant (B) who immigrated from V i e t Nam sco r e d the h i g h e s t . T h i s informant d i s p l a y e d a hi g h degree o f "obedience" toward the p a t i e n t , spoke a Chinese d i a l e c t at home and wit h her fa m i l y , and adhered t o c u l t u r a l t r a d i t i o n s , such as, h i e r a r c h i c a l nature o f the f a m i l y s t r u c t u r e and a n c e s t r a l worship. T h i s adherence t o c u l t u r a l t r a d i t i o n s was not d i s s i m i l a r t o informant C s f a m i l y who a l s o spoke Chinese at home and who had been i n Canada 16 ye a r s . No s i g n i f i c a n t d i f f e r e n c e s c o u l d be d i s c e r n e d among those informants from Hong Kong, Vietnam and China. A l a r g e r sample would be needed t o conclude i f d i f f e r e n c e s e x i s t e d . FAMILY FIGURE k - Comparison of Years In Canada, Location of Origin and Informants' EIQ Scores 96 b) Age and Gender Age and gender of the informants a l s o d i d not seem t o have an i n f l u e n c e on the degree of e t h n i c i d e n t i t y . A l l the male informants were the same age (27 y e a r s ) , w i t h scores ranging from 33 t o 39. The female informants scores were 34 to 43, w i t h a g r e a t e r range between t h e i r scores than those of the male informants. The age d i f f e r e n c e between the two female informants was f o u r t e e n years. I n f l u e n c e o f Degree of E t h n i c I d e n t i t y R e s u l t s suggested t h a t the informants' degree of e t h n i c i d e n t i t y was r e l a t e d t o some of t h e i r a c t i o n s . The informants' scores, however, do not r e f l e c t the degree of e t h n i c i t y w i t h i n the f a m i l y . Therefore, the i n f l u e n c e o f degree of e t h n i c i d e n t i t y on the b a l a n c i n g process cannot be d i s c e r n e d s i n c e t h i s process was performed by a l l o f the f a m i l y members, not j u s t the informants. Had f a m i l y members' scores been c o l l e c t e d , t h i s a n a l y s i s may have been p o s s i b l e . The r e s u l t s show t h a t a l l f a m i l i e s engaged s i m i l a r l y i n the four management s t r a t e g i e s o f the b a l a n c i n g p r o c e s s . Any v a r i a t i o n s e v i d e n t among the m a j o r i t y (5/6) of the f a m i l i e s i n v o l v e d the s p e c i f i c a c t i v i t i e s they used w i t h i n each s t r a t e g y and the degree and l e n g t h of time each s t r a t e g y was used. The d i f f e r e n c e s i n how the s i x t h f a m i l y engaged i n the b a l a n c i n g s t r a t e g i e s appeared more a t t r i b u t a b l e t o past experiences and the s t y l e s o f f a m i l y members and the p a t i e n t than t o c u l t u r a l i n f l u e n c e s . I n f l u e n c e s o f C u l t u r a l l y Based B e l i e f s and P r a c t i c e s The informants p e r c e i v e d t h a t some of t h e i r a c t i o n s and 97 those o f f a m i l y members were i n f l u e n c e d by c u l t u r a l background. Some t r a d i t i o n a l p r a c t i c e s had been passed down from g e n e r a t i o n t o g e n e r a t i o n (e.g., r e g u l a r r i t u a l s t o the gods and a n c e s t r a l worship) while other a c t i o n s were a s s o c i a t e d with b e l i e f s h e l d by t h e i r parents as w e l l as. by themselves (e.g., r e c i p r o c i t y , honoring the p a t i e n t s ' w i s h es). One informant suggested t h a t h i s a c t i o n s were i n f l u e n c e d by the way i n which he was s o c i a l i z e d w i t h i n the c u l t u r e : Mr. C: I t i s j u s t the way I was brought up. There i s a s a y i n g i n China t h a t when you grow o l d , you depend on your c h i l d r e n , your sons s p e c i f i c a l l y so, when I was brought up, t h i s was passed on t o me. Often, t r a d i t i o n s adhered t o by the sons and daughters were performed out of re s p e c t f o r t h e i r p a r e n t s ' b e l i e f s . For example, informant C's parents b e l i e v e d i n t r a d i t i o n s a s s o c i a t e d w i t h r e s t r i c t i n g v i s i t s t o the pa r e n t s ' home by new mothers. Adhering t o t h i s t r a d i t i o n a l b e l i e f d i r e c t l y i n f l u e n c e d the b a l a n c i n g p r o c e s s . Not only were the number of a v a i l a b l e f a m i l y members reduced when two daughters gave b i r t h but the mother, normally the main c a r e g i v e r o f the p a t i e n t , went t o stay with her daughters t o p r o v i d e a s s i s t a n c e . S i m i l a r l y , t h r e e informants suggested t h a t s u b s c r i b i n g t o "Chinese" t r a d i t i o n s was " o l d f a s h i o n e d . " Yet, they adhered t o p r a c t i c e s such as t r y i n g out, r e c i p r o c i t y , and honoring the p a t i e n t s ' wishes. I n t e r e s t i n g l y , two of these informants s c o r e d lowest on the EIQ while the t h i r d informant had one of the high e r s c o r e s . 98 Other i n f l u e n c e s a s s o c i a t e d with c u l t u r a l b e l i e f s i n c l u d e d the i n t e r p r e t a t i o n of t h e . f a m i l y ' s r o l e , adherence t o the t r a d i t i o n a l f a m i l y s t r u c t u r e , and u n d e r l y i n g reasons f o r t h e i r a c t i o n s . V a r i a t i o n s , however, e x i s t e d i n i n t e r p r e t a t i o n and degree of i n f l u e n c e o f the b e l i e f s among the f a m i l i e s . For example, while a l l the informants acknowledged the awareness of the t r a d i t i o n a l s t r u c t u r e of the f a m i l y , only B and C adhered t o i t t o any ext e n t . Role d i f f e r e n t a t i o n , while not r i g i d , was p r e s c r i b e d t o . Family C p e r c e i v e d the daughter's r o l e t o be d i f f e r e n t from the son's r o l e : Mr. C: To my f a t h e r , i t i s always the son you r e l y on. When you are o l d , you r e l y on your sons. The g i r l s are not t r u s t w o r t h y . He w i l l never say you r e l y on your daughters. The daughters belong t o the other f a m i l y once they are married and are c o n s i d e r e d o u t s i d e r s . The daughters d i d , however, share the l o a d w i t h the other f a m i l y members i n b a l a n c i n g the demands. The mother i n t h i s f a m i l y a l s o was not viewed t o have the same degree of i n f l u e n c e as the sons. In the same t r a d i t i o n a l sense, the mother was c o n s i d e r e d a " g i r l " and was not " r e l i e d on" to make d e c i s i o n s w i t h regard t o the p a t i e n t ' s treatment. T h i s r e s p o n s i b i l i t y f e l l t o "a son," although not always the o l d e s t . Informant B's i n t e r p r e t a t i o n of t r a d i t i o n a l f a m i l y s t r u c t u r e d i f f e r e d from t h a t of informant C. The h i e r a r c h i c a l s t r u c t u r e i n her f a m i l y was l e s s d i f f e r e n t i a t e d by gender and more i n f l u e n c e d by age and p r o x i m i t y t o the parent. The a d u l t c h i l d who was r e l i e d on the most by the 99 p a t i e n t was a l s o the e l d e s t daughter l i v i n g i n Canada (the in f o r m a n t ) . She was p e r c e i v e d t o have more r e s p o n s i b i l i t y w i t h r e g a r d t o c a r i n g f o r the p a t i e n t and f o r making d e c i s i o n s r e g a r d i n g h o s p i t a l i z a t i o n . Although she d i s c u s s e d these d e c i s i o n s w i t h her younger b r o t h e r and s i s t e r s , i t was expected t h a t she would make the d e c i s i o n and be l i s t e n e d t o : Ms. B: My b r o t h e r and s i s t e r s l i s t e n t o me. What I say they f o l l o w . T h i s changed, however, when the e l d e s t s i s t e r i n the f a m i l y a r r i v e d from the O r i e n t . While she was r e s p o n s i b l e f o r c a r e g i v i n g and making d e c i s i o n s , she d i d not speak E n g l i s h , t h e r e f o r e , she had t o r e l y oh the informant's c h i l d r e n f o r t r a n s l a t i o n and a s s i s t a n c e i n emergencies. The r o l e of the " f a m i l y " i n be i n g r e s p o n s i b l e f o r the p a t i e n t s ' w e l l b e i n g was d e s c r i b e d by fou r a d u l t c h i l d informants (B, C, E and F) . They i n f e r r e d t h a t the f a m i l y members' r e s p o n s i b i l i t y was to support the p a t i e n t and exempt him or her from normal r e s p o n s i b i l t i e s . Since the f a m i l y , not the p a t i e n t , commonly made c r u c i a l d e c i s i o n s r e g a r d i n g treatment a l t e r n a t i v e s , t h r e e informants (B, C, and E) i n f e r r e d t h a t t h e i r i l l f a m i l y member d i d not see themselves as being i n need of i n f o r m a t i o n p e r t a i n i n g t o t h e i r i l l n e s s . The p h y s i c i a n conversed i n i t i a l l y w ith f a m i l y members and l e f t i t t o f a m i l y members t o inform the p a t i e n t about i l l n e s s - r e l a t e d d e c i s i o n s . Most of the a d u l t c h i l d informants (4/5) saw t h e i r r o l e as p r o t e c t i n g the p a t i e n t and redu c i n g h i s or her pr e s s u r e and w o r r i e s . The spouse informant, i n c o n t r a s t , d i d not d e s c r i b e t h i s 100 same sense of f a m i l y r e s p o n s i b i l i t y . Her husband (patient) p a r t i c i p a t e d i n making d e c i s i o n s r e g a r d i n g h i s i l l n e s s and treatment. However, he absolved h i m s e l f o f h i s normal r e s p o n s i b l i t i e s a f t e r h e a r i n g the d i a g n o s i s and p r o g n o s i s : Mrs. D: A f t e r he knew i t was cancerous and no t h i n g c o u l d be done, he s t a r t e d throwing e v e r y t h i n g on my sh o u l d e r s . Before, a l l the busi n e s s was attended by him but a f t e r t h a t he s a i d t h a t I b e t t e r take care o f e v e r y t h i n g . T h i s p a t t e r n o f behaviour was e x h i b i t e d by a second p a t i e n t (C) as w e l l . Whether the a c t i o n s o f the p a t i e n t r e f l e c t e d p e r s o n a l s t y l e or were c u l t u r a l l y based was u n c e r t a i n . Not enough data were a v a i l a b l e t o he l p the r e s e a r c h e r d i s c e r n any s i m i l a r i t i e s between the two p a t i e n t s . Another area where c u l t u r a l i n f l u e n c e was evi d e n t i n v o l v e d the u n d e r l y i n g reasons g i v e n f o r f a m i l y members' a c t i o n s . For example some f a m i l y members s e l e c t e d c e r t a i n foods or herbs because they b e l i e v e d they "gave s t r e n g t h f o r l i f e " w h i l e other f a m i l y members based t h e i r s e l e c t i o n on other reasons. Often these reasons were based on i n f o r m a t i o n from f r i e n d s and newspapers. Reasons behind the performance of s p e c i a l r i t u a l s was a l s o c u l t u r a l l y based: Mr. C: When my Dad got s i c k , my Mom went around the room i n the house and sprayed i t with water. She s p r i n k l e d water around a l l the w a l l , a l l the edges and then she swept i t up. I guess she was t a l k i n g w i t h her f r i e n d s and some r e l a t i v e s and t h a t i s what they t o l d her to do. I don't know what type o f water i t was but I guess she got i t from somebody. She s a i d i t would c l e a n up the bad luck, sweep up the bad s p i r i t s . A p a r t i c u l a r l y r e v e a l i n g aspect of the f i n d i n g s was the informants' p e r c e p t i o n t h a t t h e i r f a m i l y was unique from 101 other Chinese f a m i l i e s : Mr. F: A f a m i l y u n i t i s somewhat l i k e an i n d i v i d u a l person. I t v a r i e s . We a l l d i f f e r even though we are a l l Chinese. They b e l i e v e d assumptions were made about t h e i r behaviour t h a t was based on the f a c t they were Chinese r a t h e r than t h e i r p e r s o n a l views. In summary, i t was c l e a r t h a t a r e l a t i o n s h i p e x i s t e d between the informants' a c t i o n s and t h e i r degree of e t h n i c i d e n t i t y . The d i f f e r e n c e s i n degree of e t h n i c i d e n t i t y may account f o r the d i s c r p a n c i e s n o t i c e d among the informants' a c t i o n s . Family members' a c t i o n s were i n f l u e n c e d by t h e i r c u l t u r a l b e l i e f s and. t r a d i t i o n s . These c u l t u r a l i n f l u e n c e s were seen throughout the b a l a n c i n g process i n the f a m i l y members' some of the f a m i l y members' a c t i o n s , such as food s e l e c t i o n s , t r y i n g out herbs, and f a m i l y r o l e s , and i n the reasons g i v e n f o r t h e i r a c t i o n s . Of p a r t i c u l a r importance i s the f a c t t h a t f a m i l i e s wanted t o be viewed as a unique f a m i l y u n i t r a t h e r than a c u l t u r a l e n t i t y . L o c a t i o n of Care When s u b j e c t e d t o content a n a l y s i s , the data i n d i c a t e d the informants' p r e f e r e n c e f o r l o c a t i o n o f care, why i t was p r e f e r r e d , and f a c t o r s t h a t i n f l u e n c e d t h e i r c h o i c e . The informants a l s o commented on the l o c a t i o n where death would occur. Home As P r e f e r r e d Choice F i v e of the s i x informants p r e f e r r e d home as the l o c a t i o n o f care f o r t h e i r i l l f a m i l y member. T h e i r reasons were i n t e r r e l a t e d and r e f l e c t e d b e n e f i t s t o both the f a m i l y 102 and the p a t i e n t . The reasons were 1) honoring the p a t i e n t ' s wishes, 2) the p a t i e n t ' s happiness, 3) normalcy, 4) freedom, and 5) r e d u c i n g worry. Honoring Wishes The most frequent reason f o r p r e f e r r i n g care at home was the sense of honoring the p a t i e n t ' s wishes t o be at home: Mr. C: I f dad wants t o be home, i t i s j u s t the way i t i s . Mrs. E: I t was her wish t o come home. Mr. F: I f he f e e l s t h a t he wants t o stay home then t h a t ' s what we w i l l do. Being able t o honour the f a m i l y members' wishes meant, t o some informants, t h a t they were f u l f i l l i n g t h e i r f a m i l y r e s p o n s i b i l i t i e s . To others, a sense of r e c i p r o c i t y was suggested. They were "paying t h e i r dues" f o r a l l the parents had g i v e n t o them. A l l the informants i n d i c a t e d t h a t the p a t i e n t s ' r e l u c t a n c e t o be i n h o s p i t a l was not based on c u l t u r a l taboos or stigmas. P a t i e n t s d i s l i k e d b e i n g i n h o s p i t a l because they were a f r a i d of d a i l y "needle pokes"; they were unable t o communicate wi t h anyone because o f language b a r r i e r s and were t h e r e f o r e bored, i s o l a t e d and " i n p r i s o n " ; they d i s l i k e d Canadian h o s p i t a l food; and they p r e f e r r e d t h a t care be p r o v i d e d by f a m i l y members r a t h e r than by nurses. Knowing the p a t i e n t c o u l d not communicate with the nurses heightened the f a m i l y members' a n x i e t y and sense o f u n c e r t a i n t y . Family members ensured they were a v a i l a b l e t o t r a n s l a t e " i n case something unexpected" o c c u r r e d . Some b e l i e f s were found t o 103 i n f l u e n c e p a t i e n t s ' behaviour. For example, one informant i n d i c a t e d t h a t h i s f a t h e r ' s d i s l i k e of h o s p i t a l s was a s s o c i a t e d w i t h h i s d i s l i k e o f frequent b l o o d t e s t s s i n c e b l o o d i s b e l i e v e d t o be the source o f l i f e . The informant went on to e x p l a i n t h a t : Mr. C: He has t o eat a l o t , has t o do a l o t t o g a i n t h a t b l o o d and now you go ahead and i n two seconds ... out i t comes, a t e s t tube o f blood. He r e a l l y hated t h a t . T h i s p a t i e n t b e l i e v e d t h a t food "gave s t r e n g t h o f l i f e " and "hope" f o r r e s i s t i n g the d i s e a s e . Honoring the p a t i e n t s ' wishes o c c u r r e d w i t h i n the context of judging the f a m i l y members' a b i l i t y t o manage the r e q u i r e d care and the a v a i l a b i l i t y of adequate r e s o u r c e s . In one f a m i l y , the informant requested a d d i t i o n a l a s s i s t a n c e from her s i s t e r s i n the O r i e n t and e a s t e r n Canada. Both a r r i v e d s h o r t l y a f t e r b e i ng summoned. S i m i l a r l y , another f a m i l y d i d not b r i n g the p a t i e n t home without f i r s t seeking a d d i t i o n a l f a m i l y support. A t h i r d informant determined t h a t she c o u l d no longer honor her husband's wish t o remain at home because she "c o u l d no longer handle him." P a t i e n t s ' Happiness Most informants r e c o g n i z e d t h a t c a r i n g f o r the p a t i e n t at home promoted a g r e a t e r sense o f w e l l - b e i n g i n the p a t i e n t . By be i n g happier, p a t i e n t s were b e t t e r able t o d e a l w i t h the impact o f t h e i r i l l n e s s and to face the i n e v i t a b l e . The home environment o f f e r e d more opt i o n s f o r s u s t a i n i n g happiness, such as food c h o i c e s and watching Chinese t e l e v i s i o n programs. The f a m i l y members' wanted t o make sure 104 " c e r t a i n t h i n g s were happy" f o r the p a t i e n t s i n t h e i r f i n a l days. Seeing the p a t i e n t s happy eased the emotional s t r a i n of the s i t u a t i o n f o r the f a m i l y members. Normalcy C a r i n g f o r the i l l f a m i l y member at home gave f a m i l y members a sense of normalcy. Normalcy meant c a r r y i n g out r o u t i n e s and doing what they were accustomed to doing t o g e t h e r . For one informant t h i s meant going f o r walks with her mother and her c h i l d r e n to the nearby McDonald's f o r f r e n c h f r i e s . For another, i t meant seein g the p a t i e n t (the dad) b a b y s i t t i n g the g r a n d c h i l d r e n . For one p a t i e n t , i t meant t h a t her f r i e n d s c o u l d come over and "keep her o ccupied." These f r i e n d s were unable to v i s i t her i n h o s p i t a l because they "couldn't f i n d t h e i r way around" s i n c e they d i d not speak E n g l i s h . A sense of normalcy p r o v i d e d a d i s t r a c t i o n f o r a l l f a m i l y members and f a c i l i t a t e d t h e i r a b i l i t y t o cope. Normalcy, however, d i d not mean a l l o w i n g the p a t i e n t to c a r r y on w i t h h i s / h e r u s u a l a c t i v i t i e s . The f a m i l y members d i d not "allow" the p a t i e n t t o perform some f u n c t i o n s , e s p e c i a l l y those a c t i v i t i e s t h a t were "too p h y s i c a l . " The a c t i v i t i e s d e l e t e d from the p a t i e n t s ' r o u t i n e were d i s t r i b u t e d among other f a m i l y members: Mr. C: Before, my f a t h e r was the head of the household. Now he has l e s s r e s p o n s i b i l i t y , l i k e the f i n a n c i a l s i d e , i t i s almost e l i m i n a t e d . Now we ease the p r e s s u r e so he doesn't have t o worry or work anymore. Now he s t a y s home and sometimes he takes care of the g r a n d c h i l d r e n . T h i s g i v e s him more time t o do the t h i n g s t h a t he wants ... we l e t him watch t v . 105 Mr. F: We f o r b i d him from doing p h y s i c a l a c t i v i t i e s . . i I do most of t h a t now but the f a m i l y matters l i k e paper work, he s t i l l wants to take p a r t . Freedom Another reason f o r p r e f e r r i n g home care was a sense of freedom although t h i s freedom was not the same f o r a l l the informants. For t h r e e informants, freedom was a s s o c i a t e d w i t h a sense of r e l i e f t h a t arose from not c o n s t a n t l y having to j u g g l e other r e s p o n s i b i l i t i e s so "that someone can always be at the bedside" of the p a t i e n t when i n h o s p i t a l . Conversely, another informant p r e f e r r e d home care because i t gave the p a t i e n t more freedom. The informant p e r c e i v e d , on the other hand, t h a t the f a m i l y members were l e s s f r e e because they remained w i t h i n c l o s e p r o x i m i t y of the p a t i e n t " j u s t i n case" something unexpected should occur and t h e i r a s s i s t a n c e was needed. Reducing Worry C a r i n g f o r the p a t i e n t i n the home environment reduced the worry f o r the informants. Having the p a t i e n t nearby meant they c o u l d "keep an eye" on him/her. Watching the p a t i e n t enabled them to judge the p a t i e n t ' s p r o g r e s s i o n (or r e g r e s s i o n ) so they c o u l d determine how they c o u l d best manage h i s / h e r needs. F a c t o r s I n f l u e n c i n g the Home Care Experience Most of the informants had d i f f i c u l t y a r t i c u l a t i n g e x p l i c i t l y the f a c t o r s t h a t helped or h i n d e r e d managing care at home. Through content a n a l y s i s however, fo u r b a s i c f a c t o r s which f a c i l i t a t e d the success of the home care 106 experience were i d e n t i f i e d : 1) c a r e g i v e r a v a i l a b i l i t y and a b i l i t y , 2) f a m i l y support, 3) the f a m i l y p h y s i c i a n , and 4) p a t i e n t s ' p h y s i c a l c o n d i t i o n and symptom c o n t r o l . C a r e g i v e r A v a i l a b i l i t y and / A b i l i t y With each f a m i l y , c a r i n g f o r the p a t i e n t at home d i r e c t l y , r e l a t e d to the a v a i l a b i l i t y and a b i l i t y of the c a r e g i v e r s t o assume the necessary added r e s p o n s i b i l i t i e s . In each f a m i l y t h a t p r e f e r r e d the home environment, more than one c a r e g i v e r was p r e s e n t . In the f a m i l i e s w i t h spouses, the spouse was i d e n t i f i e d as the main c a r e g i v e r . The "main c a r e g i v e r " bore the g r e a t e s t burden from the added r e s p o n s i b i l i t y . One spouse d e s c r i b e d a growing s o c i a l i s o l a t i o n r e s u l t i n g from her d e c l i n i n g i n v i t a t i o n s i n order t o be "nearby" the p a t i e n t as h i s c o n d i t i o n worsened. She d i d not, however, d e s c r i b e h e r s e l f as being t i r e d or exhausted. Her s t y l e of coping was t o " j u s t keep going." When a d d i t i o n a l a s s i s t a n c e was suggested by h e a l t h care p r o f e s s i o n a l s , she d i d not accept i t u n t i l she r e c o g n i z e d the need h e r s e l f by judging the p a t i e n t ' s p h y s i c a l dependency and the a b i l i t i e s of h e r s e l f and other f a m i l y members. Family Support The presence and a s s i s t a n c e of f a m i l y members was most c o n s i s t e n t l y p e r c e i v e d as e n a b l i n g the management of care at home. Those f a m i l i e s with many members were able to d i s t r i b u t e the added r e s p o n s i b i l i t i e s more e a s i l y . S i m i l a r l y , f a m i l i e s w i t h fewer members who sought support and a s s i s t a n c e from f r i e n d s or from home support s e r v i c e s , such as homemakers and home care nurses were a l s o able t o manage 107 home ca r e . F a m i l i e s expressed no f r u s t r a t i o n with the l a c k of home support s e r v i c e s , perhaps owing t o t h e i r l i m i t e d experience w i t h the h e a l t h care system, t h e i r l a c k o f knowledge of a v a i l a b l e resources or t h e i r r e l i a n c e on the f a m i l y . Family P h y s i c i a n F a m i l i e s managing care at home r e l i e d h e a v i l y on p h y s i c i a n input or o p i n i o n . The f a m i l y p h y s i c i a n was c o n s i s t e n t l y mentioned as the h e a l t h care p r o f e s s i o n a l t o whom the f a m i l y t u r n e d r e g a r d i n g d e c i s i o n s about the p a t i e n t s ' p l a n o f care and admissions t o h o s p i t a l . The p h y s i c i a n was viewed as the "expert." One informant a n t i c i p a t e d t h a t the p a t i e n t would remain at home u n t i l the p h y s i c i a n s a i d otherwise. I n t e r e s t i n g l y , i n a l l f a m i l i e s , the f a m i l y p h y s i c i a n p r o v i d e d i n f o r m a t i o n about p o t e n t i a l l y u s e f u l resources or made the i n i t i a l c o ntact f o r the f a m i l y members wit h r e s o u r c e s . P a t i e n t s ' P h y s i c a l C o n d i t i o n and Symptom C o n t r o l The f i n a l f a c t o r i n f l u e n c i n g the home care experience was the p a t i e n t s ' p h y s i c a l c o n d i t i o n and symptom c o n t r o l . I l l p a t i e n t s were e x p e r i e n c i n g v a r y i n g degrees of p h y s i c a l l i m i t a t i o n s and symptoms such as p a i n and dyspnea. What c o n s t i t u t e d a c c e p t a b l e p h y s i c a l d e f i c i e n c i e s or c o n t r o l l a b l e symptoms f o r one f a m i l y were p e r c e i v e d as unmanageable t o another. For example, one informant thought her f a m i l y c o u l d manage the p a t i e n t ' s i n a b i l i t y t o go to the washroom whereas another informant f e l t t h a t would be the " l i m i t " . In 108 g e n e r a l , however, l o s s of m o b i l i t y , u n c o n t r o l l e d p a i n and i n c r e a s i n g dependency were i d e n t i f i e d as the " l i m i t " . Family members gauged t h e i r c a r e g i v i n g a b i l i t i e s a g a i n s t the p a t i e n t ' s p h y s i c a l c o n d i t i o n and symptoms to determine i f the f a m i l y needed a d d i t i o n a l a s s i s t a n c e or had "reached t h e i r l i m i t " . F a c t o r s I n f l u e n c i n g the D e c i s i o n t o H o s p i t a l i z e Informants a n t i c i p a t e d a " l i m i t " when they c o u l d no longer honor the p a t i e n t ' s wishes to stay at home because they would no longer be able meet the p a t i e n t s ' needs at home. Once the f a m i l i e s p e r c e i v e d t h a t they had "reached t h e i r l i m i t , " which v a r i e d among the f a m i l i e s , they sought the a s s i s t a n c e of h e a l t h care p r o f e s s i o n a l s . The informants whose f a m i l y member's c o n d i t i o n was r e l a t i v e l y s t a b l e had d i f f i c u l t y d e s c r i b i n g t h i s end p o i n t . F r e q u e n t l y , they had "not g i v e n i t any thought." F a m i l i e s whose i l l members were i n h o s p i t a l were able t o d e s c r i b e p r e c i s e l y what f a c t o r s had l e d t o h o s p i t a l i z a t i o n . Whenever the f a m i l y members f e l t t h a t the s i t u a t i o n or some aspect of the s i t u a t i o n was out of c o n t r o l and/or beyond t h e i r a b i l i t y t o manage i n the home, they deemed h o s p i t a l i z a t i o n necessary. They conveyed no sense of g u i l t f o r making t h i s c h o i c e . In such s i t u a t i o n s , f a m i l y members f e l t they l a c k e d the " a b i l i t y " t o adequately care f o r the p a t i e n t . The p a t i e n t was d e s c r i b e d as being "too i l l " t o manage at home when he/she had u n c o n t r o l l e d p a i n , vomiting, i n c r e a s i n g immobility, or i n c r e a s i n g dependency. What one informant f e a r e d most was the p a t i e n t l a p s i n g i n t o a "coma" 109 or "not knowing her." T h i s f e a r was f u e l l e d by past experiences and u l t i m a t e l y was the t r i g g e r f o r admission t o h o s p i t a l . "Reaching the l i m i t " f o r another informant o c c u r r e d when he and h i s mother were unable t o manage the p a t i e n t ' s immobility, i n c r e a s e d dependency, u n c o n t r o l l e d p a i n , and demanding behaviour. The informant d e s c r i b e d " r e a c h i n g the l i m i t " t h i s way: Mr. A: We r e a l i z e d t h a t we c o u l d not h e l p him anymore. I c o u l d not be th e r e c o n s t a n t l y t o help him and I d i d not have the s t r e n g t h t o c a r r y him t o the washroom e i t h e r ... i t was my Mom and I dragging him i n t o the washroom. Th i s f a m i l y ' s a b i l i t y t o manage care was hampered by the spouse's f a i l i n g h e a l t h , the son's l i m i t e d a s s i s t a n c e , and no a s s i s t a n c e from other f a m i l y members or f r i e n d s . The f a m i l y sought l i m i t e d a s s i s t a n c e from the community at l a r g e and from h e a l t h care p r o f e s s i o n a l s . When asked t o d e s c r i b e the resources they would have r e q u i r e d t o manage the p a t i e n t ' s care at home, the informant r e p l i e d : Mr. A: Unless h e l p was t h e r e twenty hours at l e a s t each day and i f the doctor had changed the medications t o c o n t r o l h i s p a i n , the s i t u a t i o n might have been d i f f e r e n t . But s t i l l , we probably would not have brought him home. C a r e g i v e r f a t i g u e was not e x p l i c i t l y mentioned as a reason f o r choosing h o s p i t a l i z a t i o n although f a t i g u e was evident from the p h y s i c a l gestures made by informants when d e s c r i b i n g the s i t u a t i o n . For example, two informants slouched over and pr e s s e d on t h e i r shoulders as though a heavy weight was being c a r r i e d t h e r e . One informant s i g h e d 110 deeply and slouched further into the chair u n t i l descr ib ing the r e l i e f f e l t when the pat ient was h o s p i t a l i z e d . For the two fami l ies whose i l l family members were i n h o s p i t a l / the h o s p i t a l s e t t ing offered a sense of r e l i e f , knowing the pat ient was get t ing the care that he needed. One informant c l e a r l y expressed her concern that the care she and the family members were provid ing was not "as good" as what her husband needed and would get i n h o s p i t a l : Mrs. D: He would get better care i n h o s p i t a l and receive the oxygen that he needed. This concern was the basis for persuading the pat ient to consent to admission to h o s p i t a l . The second informant viewed the p a t i e n t ' s h o s p i t a l i z a t i o n as the r e l i e f for h i s mother: Mr. A: Having him i n h o s p i t a l gives her the ease of mind that he i s get t ing the care he needs and she i s get t ing her r e s t . I t ' s that constant threat to die that worried her. In contrast , three of the informants, whose family member had previous ly been h o s p i t a l i z e d , expressed how h o s p i t a l i z a t i o n had increased t h e i r s tress and required added e f for t to continue "balancing" t h e i r family demands and the caregiv ing demands: Mrs. E : There was a lo t of s tress when she was i n hosp i ta l because she [the pat ient] was chewing a l l of us out for no reason. It was r e a l l y h e c t i c . Having her i n h o s p i t a l r e a l l y t i e d me down. Informants acknowledged the helpfulness of using "cue" cards to communicate to the pat ients regarding t h e i r bas ic concerns such as pa in , comfort, and e l iminat ion needs i n helping to reduce the family member's concerns associated with no one understanding the pat ient should the need a r i s e . Nurses who I l l used t h i s technique were p e r c e i v e d as being s u p p o r t i v e t o p a t i e n t s and f a m i l i e s . Dying i n H o s p i t a l Informants i d e n t i f i e d the h o s p i t a l as the p l a c e where the p a t i e n t would d i e . Three informants had not "given i t any thought" but, when asked, i n d i c a t e d the p a t i e n t would d i e i n h o s p i t a l . The t h r e e p a t i e n t s who have d i e d d i d so i n h o s p i t a l . There appeared t o be no c u l t u r a l underpinnings t o t h i s d e c i s i o n s i n c e a l l d i s a g r e e d t h a t death i n the home might be c o n s i d e r e d "taboo." One informant i n d i c a t e d t h a t t h i s t h i n k i n g was " o l d fa s h i o n e d " even f o r someone her mother's age, which was eighty-two. A l l the informants p e r c e i v e d a l i m i t t o t h e i r a b i l i t i e s t o p r o v i d e home care and t h a t the care needed f o r the p a t i e n t near and at death c o u l d only be p r o v i d e d by h e a l t h care p r o f e s s i o n a l s . Perhaps death at home may be a ch o i c e f o r p a t i e n t s and f a m i l y members wit h a good command of the E n g l i s h language; i t may not be f o r some Chinese f a m i l i e s owing t o the l i m i t e d number of Chinese speaking support persons. Few home care nurses, homemakers, and p e r s o n a l care a i d e s speak Chinese. T h i s impression was not v a l i d a t e d s i n c e each informant became i n c r e a s i n g l y emotional and t e a r f u l d u r i n g the d i s c u s s i o n of t h i s i s s u e . P a r t i c i p a t i o n In Study Of the s i x informants, f i v e found the process of p a r t i c i p a t i n g i n the study h e l p f u l . The response of one informant t y p i f i e d the comments about the e f f e c t of the i n t e r v i e w s : 112 Mr. F: I f e e l a l o t b e t t e r t a l k i n g about i t . I t g i v e s me a chance t o t a l k about what's on my mind. T h e i r reasons f o r v o l u n t e e r i n g t o p a r t i c i p a t e i n the study were a s s o c i a t e d with "paying t h e i r dues" or r e c i p r o c i t y toward h e a l t h care p r o f e s s i o n a l s who had helped t h e i r p arent: Mr. C: I know i t might help somebody e l s e i n the f u t u r e and the nurses have given my dad such good care and a l o t o f care so I am s o r t of paying my dues ... maybe i t w i l l h elp him at some time i n the f u t u r e as w e l l . Mr. F: Sometimes I t h i n k t h a t t h i s i s the l e a s t I can do f o r the h e a l t h care people. Although a l l informants were t e a r f u l d u r i n g the i n t e r v i e w s , they d i d not hide t h e i r emotions nor h e s i t a t e t o contin u e . They found i t "hard" t o t a l k about the s i t u a t i o n because i t caused them t o t h i n k about the f u t u r e l o s s of t h e i r parent, or f o r one, her spouse. The one informant who was h e s i t a n t t o p a r t i c i p a t e d i d not i n d i c a t e how she found p a r t i c i p a t i n g i n the study. While she agreed t o a second i n t e r v i e w , the i n t e r v i e w c o u l d not be conducted because the p a t i e n t d i e d . Summary In summary, the conceptual a n a l y s i s of the i n t e r v i e w data r e v e a l e d t h a t Chinese f a m i l i e s engaged i n the b a l a n c i n g process t o manage c a r e g i v i n g demands and everyday f a m i l y demands. Four management s t r a t e g i e s were used i n t h i s p r o c e s s . Gauging, a n t i c i p a t i n g , s h a r i n g the l o a d and r e s o u r c i n g p r o v i d e d the s t r a t e g i e s t o enable the f a m i l y members t o cope with the f l u c t u a t i n g c a r e g i v i n g and f a m i l y demands. Each s t r a t e g y was c h a r a c t e r i z e d by c e r t a i n a c t i v i t i e s although v a r i a t i o n s were evident among the 113 f a m i l i e s i n terms of types and f r e q u e n c i e s of a c t i v i t i e s used. Two f a c t o r s i n f l u e n c e d the b a l a n c i n g p r o c e s s : past experiences and s t y l e of p a t i e n t s and f a m i l y members. C u l t u r a l i n f l u e n c e s were ev i d e n t i n some of the a c t i v i t i e s o f f a m i l y members and i n the reasons g i v e n f o r t h e i r a c t i o n s . The EIQ r e s u l t s r e v e a l e d t h a t a r e l a t i o n s h i p e x i s t e d between the informants' degree of e t h n i c i d e n t i t y and some of t h e i r a c t i o n s . However, the small sample s i z e and the f a c t t h a t f a m i l y members' scores were not c o l l e c t e d p r e c l u d e d the drawing o f f i r m c o n c l u s i o n s about the r e l a t i v e impact on the b a l a n c i n g p r o c e s s . The r e s u l t s of t h i s study a l s o r e v e a l e d t h a t home care was p r e f e r r e d , from the p e r s p e c t i v e o f the informants, by the m a j o r i t y of t h e i r f a m i l i e s over h o s p i t a l c a r e . Four reasons were given f o r t h i s p r e f e r e n c e : honoring the p a t i e n t s ' wishes, i n c r e a s i n g the p a t i e n t s ' happiness, l i v i n g a more normal l i f e , p r o v i d i n g g r e a t e r freedom f o r the p a t i e n t and fa m i l y members, and redu c i n g worry. The a b i l i t y of the f a m i l y members t o manage care at home was dependent, however, upon c a r e g i v e r a v a i l a b i l i t y and a b i l i t y , the adequacy of f a m i l y support, the i n f o r m a t i o n p r o v i d e d by the p h y s i c i a n r e g a r d i n g resources, and the p a t i e n t s ' p h y s i c a l c o n d i t i o n and symptom c o n t r o l . The informants' p e r c e p t i o n s about p a r t i c i p a t i n g i n the study were a l s o presented. 114 Chapter F i v e DISCUSSION AND IMPLICATIONS The purpose of t h i s d i s c u s s i o n i s t o e x p l a i n the f i n d i n g s i n the c u r r e n t study, t o l o c a t e the study w i t h i n the context o f r e l a t e d knowledge and t o c o n s i d e r the i m p l i c a t i o n f o r n u r s i n g p r a c t i c e and r e s e a r c h . In Chapter Two, a review o f the l i t e r a t u r e e s t a b l i s h e d t h a t l i t t l e i s know about the management process t h a t Chinese f a m i l i e s use i n c a r i n g f o r an a d u l t member with cancer i n the home and h o s p i t a l s e t t i n g s . The f i n d i n g s from e x i s t i n g r e s e a r c h on the t o p i c were scant. The l i t e r a t u r e reviewed i n Chapter Two w i l l serve as a b a s i s f o r the d i s c u s s i o n of the r e s u l t s o f the present study. Where the f i n d i n g s i n c l u d e themes t h a t d i d not a r i s e i n the i n i t i a l review, a d d i t i o n a l r e s e a r c h and t h e o r e t i c a l l i t e r a t u r e are used. The d i s c u s s i o n i s or g a n i z e d t o r e f l e c t the four r e s e a r c h q u e s t i o n s presented i n Chapter One. F i r s t , the b a l a n c i n g process i s d i s c u s s e d . Second, the i n f l u e n c e s o f past experiences and s t y l e are reviewed, f o l l o w e d by a d i s c u s s i o n on c u l t u r a l i n f l u e n c e s and the s i g n i f i c a n c e of e t h n i c i d e n t i t y t o the r e s u l t s . T h i r d , p r e f e r e n c e of l o c a t i o n of care i s examined. Last, the i m p l i c a t i o n s of the f i n d i n g s f o r n u r s i n g p r a c t i c e and rese a r c h , and the l i m i t a t i o n s and str e n g t h s o f the study are presented. B a l a n c i n g Process The r e s e a r c h f i n d i n g s c l e a r l y r e v e a l e d t h a t Chinese f a m i l i e s managed the care o f a f a m i l y member wit h advanced 115 cancer i n the home and h o s p i t a l through b a l a n c i n g . The process of b a l a n c i n g c o n s i s t e d of four management s t r a t e g i e s used by f a m i l y members as they attempted t o cope with the everchanging demands of the s i t u a t i o n . Two s e t s o f demands were ev i d e n t i n the r e s u l t s , c a r e g i v i n g demands and everyday f a m i l y demands. The demands of c a r e g i v i n g were not managed i n i s o l a t i o n , but r a t h e r , s i m u l t a n e o u s l y with the demands of everyday l i v i n g . Family Demands Family demands c o n s i s t e d of f a m i l y members' everyday r e s p o n s i b i l i t i e s , both w i t h i n the f a m i l y and the l a r g e r community. The r e s p o n s i b i l i t i e s w i t h i n the f a m i l y household i n c l u d e d the t a s k s a s s o c i a t e d w i t h m a i n t a i n i n g a home, those i n v o l v e d i n m a i n t a i n i n g a marriage, c h i l d - c a r e r e s p o n s i b i l i t i e s , and demands t h a t arose from developmental events ( i . e . , b i r t h s ) . The f a m i l y demands of the a d u l t c h i l d r e n informants encompassed not only t h e i r own household but t h a t o f t h e i r p a r e n t s . Family members' demands w i t h i n the community at l a r g e i n c l u d e d o c c u p a t i o n a l r e s p o n s i b i l i t i e s , s o c i a l o b l i g a t i o n s , and completion of government documents f o r t h e i r p a r e n t s . L i t t l e i s documented i n the l i t e r a t u r e r e g a r d i n g everyday f a m i l y demands. Most r e s e a r c h e r s have focused on d i s r u p t i o n s or hardships experienced by the fa m i l y , such as a l t e r e d household r o l e s , f i n a n c i a l p r e s s u r e s , and a l t e r a t i o n s i n spouses' p a t t e r n s o f l i v i n g ( Blank, CLark, Longman & Atwood, 1989; Lewis, 1986; S t e t z , 1987). Others have made r e f e r e n c e t o demands c a r e g i v i n g p l a c e s on 116 f a m i l y members' time (Hampe, 1975; Lewis, 1986; O'Brien, 1983; Wright and Dyck, 1984). C o r b i n and Strauss (1988) r e p o r t e d s i m i l a r f a m i l y demands to what was found i n t h i s study, which they termed e v e r y d a y - l i f e work. These r e s e a r c h e r s d e s c r i b e t h i s work as the d a i l y round of t a s k s t h a t h e l p keep a household going and t a s k s a s s o c i a t e d w i t h o c c u p a t i o n a l work. They d i d not, however, d e s c r i b e other demands a r i s i n g from the community at l a r g e as found i n the present study, nor d i d they make r e f e r e n c e to c u l t u r a l l y r e l a t e d t a s k s . C a r e g i v i n g Demands C a r e g i v i n g demands arose from the p a t i e n t s ' i l l n e s s and care requirements. These demands were c o n s i s t e n t w i t h those found i n other s t u d i e s which have focused on c a r e g i v i n g needs of cancer p a t i e n t s (Grobe, TAhmann, & I l s t r u p , 1982; Googe & V a r r i c h i o , 1981; Hampe, 1975; H o l i n g , 1983; Wright & Dyck, 1984). C o r b i n and Strauss (1988) r e p o r t e d s i m i l a r f i n d i n g s i n a study conducted with 60 Caucasian couples managing c h r o n i c i l l n e s s (one b e i n g cancer) at home. The r e s e a r c h e r s termed the demands i l l n e s s - r e l a t e d work. I l l n e s s - r e l a t e d work c o n s i s t e d of regimen work, c r i s i s p r e v e n t i o n and h a n d l i n g , symptom management, and d i a g n o s t i c - r e l a t e d work. Demands t h a t were unique t o the present study p e r t a i n e d t o the performance of c u l t u r a l l y r e l a t e d p r a c t i c e s aimed at s t r e n g t h e n i n g the p a t i e n t , such as p r e p a r i n g h e r b a l soups and seeking the a s s i s t a n c e of h e r b a l i s t s , and t r a n s l a t i n g f o r p a r e n t s . These demands r e q u i r e d a d d i t i o n a l time and f i n a n c i a l c o n t r i b u t i o n by f a m i l y members to be accommodated. 117 The S t r u g g l e of the B a l a n c i n g Process D e a l i n g with the p r e c a r i o u s n e s s o f the s i t u a t i o n brought about by the u n c e r t a i n t y and u n p r e d i c t a b i l i t y of the i l l n e s s r e q u i r e d constant j u g g l i n g or b a l a n c i n g on the p a r t o f f a m i l y members. Other r e s e a r c h e r s who have s t u d i e d f a m i l i e s coping with c h r o n i c i l l n e s s management have d e s c r i b e d s i m i l a r experiences t o t h a t of the Chinese f a m i l i e s i n the c u r r e n t study (Corbin and Strauss, 1988; Davies et a l , i n p r e s s ) . The couples i n Corbin and Str a u s s ' study (1988) d e s c r i b e d a s t r u g g l e s i m i l a r t o t h a t of the Chinese f a m i l i e s i n t h i s study: the d i f f i c u l t y and amount of work on the p a r t of the whole f a m i l y t o manage i l l n e s s while at the same time c a r r y i n g on with other aspects o f t h e i r l i v e s . Moreover, s i n c e everyday l i f e was never at a s t a n d s t i l l , the work i n v o l v e d i n i t s management was always changing. The same can be s a i d f o r changes i n the p h y s i c a l and emotional needs of the p a t i e n t . These r e s e a r c h e r s found t h a t the o v e r a l l amount of t a s k s t o be performed i n c r e a s e d as the a b i l i t y of the i l l person t o p a r t i c i p a t e i n the us u a l shared d i v i s i o n of l a b o r decreased and the r e s p o n s i b i l i t i e s were s h i f t e d onto the other f a m i l y members. These f i n d i n g s support the r e s u l t s o f the present study. As c a r e g i v i n g demands in c r e a s e d , f a m i l y members s h i f t e d t h e i r o b l i g a t i o n s t o accommodate the changes. The r e s u l t was t h a t f a m i l y demands were shunted a s i d e or igno r e d . The f i n d i n g s of the present study i n d i c a t e d t h a t b a l a n c i n g continued when the p a t i e n t was admitted i n t o the h o s p i t a l u n l i k e those of Co r b i n and Strauss (1988) who 118 suggested t h i s j u g g l i n g was l i m i t e d t o the home s e t t i n g . Davies and c o l l e a g u e s ( i n press) a l s o found t h a t the e i g h t Caucasian f a m i l i e s i n t h e i r study who were managing s u p p o r t i v e care o f a f a m i l y member with advanced cancer i n the home and h o s p i t a l d e s c r i b e d a s i m i l a r s t r u g g l e i n coping with the t r a n s i t i o n o f f a d i n g away. Fading away encompassed the t r a n s i t i o n from l i v i n g with cancer t o dying with cancer. I t began wi t h the ending s i g n a l l e d by the d e c l i n e i n the p a t i e n t ' s p h y s i c a l c o n d i t i o n and the r e s u l t a n t p e r c e p t i o n t h a t the p a t i e n t was " f a d i n g away" r a t h e r than m a i n t a i n i n g , at minimum, a p l a t e a u . The same j u g g l i n g which c h a r a c t e r i z e d the b a l a n c i n g process i n the Chinese f a m i l i e s was ev i d e n t i n the way i n which these f a m i l i e s d e s c r i b e d t h e i r experience, s u g g e s t i n g t h a t they a l s o were b a l a n c i n g or going through a s i m i l a r p r o c e s s . Since both the Co r b i n and Strauss (1988) and Davies and c o l l e a g u e s ( i n press) s t u d i e s were conducted w i t h e t h n i c groups other than Chinese (predominantly Caucasian), i t may be t h a t the b a l a n c i n g process i s c h a r a c t e r i s t i c o f how any f a m i l y might cope wi t h c h r o n i c , i l l n e s s or t e r m i n a l i l l n e s s management r a t h e r than b e i n g a c u l t u r a l l y - b o u n d p r o c e s s . Other r e s e a r c h e r s who have s t u d i e d f a m i l y coping have a l l u d e d t o the s t r u g g l e t h a t f a m i l i e s experienced when managing c h r o n i c i l l n e s s (Nugent, 1988; S t e t z , Lewis & Primomo, 1986). However, no one has d e s c r i b e d the experience i n terms of a b a l a n c i n g process as was done by the Chinese f a m i l i e s . Researchers who have s t u d i e d f a m i l y coping v i s - a - v i s 119 i n d i v i d u a l coping have made r e f e r e n c e to a process which encompasses some dimension of b a l a n c i n g . For example, McCubbin and McCubbin (1987) d e f i n e d f a m i l y coping as a "process of a c h i e v i n g a balance i n the f a m i l y system t h a t f a c i l i t a t e s o r g a n i z a t i o n and u n i t y and promotes i n d i v i d u a l growth and development" (p. 68). S i m i l a r l y , i n R e i s s and O l i v e r i ' s (1980) paradigm, f a m i l y coping i s viewed as the process of simultaneously b a l a n c i n g m u l t i p l e dimensions of f a m i l y l i f e . Family coping, a c c o r d i n g to these authors, i s i n f l u e n c e d by the adaptive c a p a c i t i e s ( c o n f i g u r a t i o n , c o o r d i n a t i o n , and c l o s u r e ) of the f a m i l y . While t h e r e may be s i m i l a r i t i e s between these processes of f a m i l y coping and the b a l a n c i n g process d e s c r i b e d i n t h i s study, the d i f f e r e n c e s were more obvious. F i r s t , the process of b a l a n c i n g , as d e s c r i b e d i n t h i s study, was not a s t a t e of "being i n balance," as McCubbin and McCubbin's d e f i n i t i o n (1987) conveys. The Chinese f a m i l i e s were not i n a s t a t e of being " i n balance" nor were the demands "balanced." Rather, the f a m i l y members were c o n s t a n t l y engaged i n a c t i v i t i e s of " b a l a n c i n g . " I t may be t h a t these a c t i v i t i e s do l e a d t o a s t a t e of balance, but t h i s cannot be concluded from the r e s u l t s of t h i s study. Second, the a c t i v i t i e s engaged i n by the f a m i l y members made up the b a l a n c i n g p r o c e s s . R e i s s and O l i v e r i (1980), i n c o n t r a s t , suggested t h a t b a l a n c i n g was i n f l u e n c e d by a set of adaptive c a p a b i l i t i e s which develop i n the face of s t r e s s . R e i s s and O l i v e r i d i d not i d e n t i f y a process or s p e c i f i c 120 s t r a t e g i e s employed by the f a m i l i e s t o manage the demands of the s i t u a t i o n . Therefore, i t was d i f f i c u l t t o d i s c e r n with any degree of accuracy whether the Rei s s and O l i v e r i f i n d i n g s were congruent with those o f t h i s study. Management S t r a t e g i e s o f B a l a n c i n g The four management s t r a t e g i e s t h a t made up the b a l a n c i n g process p r o v i d e d the f a m i l i e s with the means to manage the j u g g l i n g and u n c e r t a i n t y t h a t was being experienced. A l l the f a m i l i e s i n v o l v e d i n the study engaged i n the s t r a t e g i e s o f gauging, a n t i c i p a t i n g , s h a r i n g the load, and r e s o u r c i n g although some v a r i a t i o n e x i s t e d i n when and how long some s t r a t e g i e s were used. These s t r a t e g i e s were used when the p a t i e n t s were cared f o r at home and i n h o s p i t a l . The s t r a t e g i e s were c l o s e l y i n t e r r e l a t e d and were c h a r a c t e r i z e d by p a r t i c u l a r a c t i v i t i e s . Each s t r a t e g y was of equal importance t o the b a l a n c i n g p r o c e s s . Gauging c o n s i s t e d o f a c t i v i t i e s focused on judging the s i g n i f i c a n c e of the p a t i e n t ' s present behaviour a c c o r d i n g t o past p a t t e r n s of behaviour. Changes i n behaviour became the i n d i c a t o r s o f the p a t i e n t s ' h e a l t h s t a t u s . Family members a l s o judged the f a m i l y ' s need f o r a s s i s t a n c e from other extended f a m i l y members, f r i e n d s , the community at l a r g e , or h e a l t h care p r o f e s s i o n a l s . Gauging a c t i v i t i e s became r o u t i n e when the p a t i e n t s ' c o n d i t i o n was p e r c e i v e d by f a m i l y members as s t a b l e . Worry i n c r e a s e d and gauging i n t e n s i f i e d when the r e was evidence o f d e t e r i o r a t i o n . Other r e s e a r c h e r s have made r e f e r e n c e t o s i m i l a r 121 a c t i v i t i e s by f a m i l y members l i v i n g w i t h p a t i e n t s w i t h c h r o n i c i l l n e s s e s (Roberts, 1985) as have t h e o r i s t s who have d e s c r i b e d the c o g n i t i v e process of a p p r a i s a l (Lazarus & Folkman, 1984). The work process of c a l c u l a t i n g resources used by f a m i l i e s i n c h r o n i c i l l n e s s management (Corbin & Strauss, 1988) encompassed a p o r t i o n of gauging as i t i n v o l v e d a p p r a i s a l of the resource and e x p e r t i s e r e q u i r e d t o manage the demands. The importance p l a c e d on the gauging s t r a t e g y by the informants and the p r e c i s i o n of the d e s c r i p t i o n s of the a c t i v i t i e s i n v o l v e d have added to the understanding of the c o g n i t i v e process and have r e v e a l e d the e f f o r t r e q u i r e d by f a m i l y members i n managing the care of a t e r m i n a l l y i l l f a m i l y member. A n t i c i p a t i n g was the second management s t r a t e g y used by the Chinese f a m i l y members i n b a l a n c i n g demands. I t i n v o l v e d forethought and p l a n n i n g by f a m i l y members t o prepare themselves f o r the unexpected, the expected, and the i n e v i t a b l e . I t a l s o i n v o l v e d b e i n g i n c l o s e p r o x i m i t y t o the p a t i e n t and being prepared t o act should the need a r i s e . A n t i c i p a t i n g a c t i v i t i e s o f f e r e d some c o n t r o l over the s i t u a t i o n and prepared the f a m i l y members f o r b a l a n c i n g a d d i t i o n a l r e s p o n s i b i l i t i e s as they arose. Standing by and constant v i g i l a n c e were i d e n t i f i e d as c a r e g i v i n g demands by S t e t z (1987) i n a study conducted with 65 couples managing care at home where one spouse had advanced cancer. S t e t z d e f i n e d demands as " d i f f i c u l t i e s or c h a l l e n g e s with r e s p e c t t o p r o v i d i n g at-home care t o a f a m i l y member". In the present 122 s t u d y , on t h e o t h e r hand, f a m i l y members viewed t h e a c t i v i t i e s o f s t a n d i n g by and c o n s t a n t v i g i l a n c e as n e c e s s a r y s t r a t e g i e s t h a t h e l p e d manage t h e demands o f t h e s i t u a t i o n . S h a r i n g t h e l o a d and r e s o u r c i n g s t r a t e g i e s i n c l u d e d a c t i v i t i e s most commonly i d e n t i f i e d i n t h e l i t e r a t u r e t o dat e ( C o r b i n & S t r a u s s , 1988; S t e t z e t a l , 1986; W i l l i a m s , 1988). S h a r i n g t h e l o a d r e f e r r e d t o p a r t i c i p a t i o n o r i n v o l v e m e n t o f immediate f a m i l y members and c o n s i s t e d o f a c t i v i t i e s such as t a k i n g t u r n s , s h a r i n g r e s p o n s i b i l i t i e s , g i v i n g a s s i s t a n c e , s h i f t i n g o b l i g a t i o n s , and s p e n d i n g time t o g e t h e r . A s i g n i f i c a n t f i n d i n g o f t h e p r e s e n t s t u d y was t h e emphasis p l a c e d on r e l y i n g on t h e f a m i l y t o p a r t i c i p a t e i n b a l a n c i n g t h e demands. T h i s a c t i o n was based on t h e f a m i l y members' sense o f r e c i p r o c i t y t o ward t h e p a r e n t s . R e s o u r c i n g c o n s i s t e d o f a c q u i r i n g a d d i t i o n a l a s s i s t a n c e t o h e l p i n b a l a n c i n g t h e demands. A s s i s t a n c e was sought o r was r e c e i v e d from extended f a m i l y , s o c i a l networks, and t h e community a t l a r g e , n o n p r o f e s s i o n a l h e a l e r s , and w e s t e r n h e a l t h c a r e p r o f e s s i o n a l s . S i m i l a r i t i e s e x i s t between t h e s e management s t r a t e g i e s and t h e a c t i v i t i e s o f f a m i l y members found by o t h e r r e s e a r c h e r s who have i n v e s t i g a t e d c h r o n i c i l l n e s s management. S t e t z and a s s o c i a t e s (1986) d e s c r i b e d c o p i n g s t r a t e g i e s used by 125 m o s t l y C a u c a s i a n f a m i l i e s ( p a t i e n t , spouse and s c h o o l - a g e d c h i l d r e n , r e s i d i n g a t home) t o cope w i t h c h a l l e n g e s o f everyday l i v i n g when t h e mother has a c h r o n i c i l l n e s s . C o ping s t r a t e g i e s t h a t were c o n s i s t e n t w i t h t h e management s t r a t e g i e s d e s c r i b e d by t h e Chin e s e i n f o r m a n t s i n c l u d e d a l t e r a t i o n s i n h o u s e h o l d 123 management, s e e k i n g a s s i s t a n c e o r i n f o r m a t i o n from o u t s i d e o f ho u s e h o l d f a m i l y , m o b i l i z i n g h o u s e h o l d f a m i l y members t o t a k e a c t i o n , s h a r i n g emotions, and e m p l o y m e n t - r e l a t e d a c t i o n s . S i m i l a r l y , work p r o c e s s e s d e l i n e a t e d by C o r b i n and S t r a u s s (1988) f o r i l l n e s s management are c o n s i s t e n t w i t h t h e two management s t r a t e g i e s d e s c r i b e d above. The work p r o c e s s e s o f a l l o c a t i n g t a s k s , c o o r d i n a t i n g t h e t o t a l work, and m a i n t a i n i n g v a r i o u s t y p e s o f r e s o u r c e s a r e p o r t i o n s o f t h e a c t i v i t i e s d e s c r i b e d i n t h e p r e s e n t study. Corbin and Strauss s u g g e s t e d t h a t t h e r e l a t i v e s u c c e s s o r f a i l u r e o f j u g g l i n g t h e work a s s o c i a t e d w i t h i l l n e s s management depends l a r g e l y on how t h e s e work p r o c e s s e s a r e c a r r i e d o u t . The same can be s a i d about t h e performance o f t h e f o u r management s t r a t e g i e s o f t h e p r e s e n t s t u d y . Each was i n t e g r a l t o t h e a b i l i t y o f t h e f a m i l y t o c o n t i n u e b a l a n c i n g t h e demands o f c a r e g i v i n g and everyday f a m i l y l i v i n g . I n c o n g r u e n c i e s e x i s t , however, between C o r b i n and S t r a u s s ' f i n d i n g s and t h o s e o f t h e p r e s e n t s t u d y . C o r b i n and S t r a u s s s u ggested t h a t t h e f a m i l i e s had a c l e a r u n d e r s t a n d i n g o f how t h e t a s k s were d i v i d e d and attem p t e d t o make t h e work l o a d s as " b a l a n c e d as p o s s i b l e " (p. 112) . In t h e Chi n e s e f a m i l i e s , d i v i s i o n o f t a s k s was l e s s f o r m a l ; i t " j u s t f e l l i n t o p l a c e . " A l t h o u g h t h e f a m i l i e s were b a l a n c i n g demands, t h e y d i d not share t h e t a s k s e q u a l l y . R a t h e r , some f a m i l y members, e s p e c i a l l y t h e spouses, who were most o f t e n t h e main c a r e g i v e r , more h e a v i l y l a d e n e d w i t h r e s p o n s i b i l i t i e s t h a n o t h e r s . 124 C u l t u r a l l y S p e c i f i c A c t i v i t i e s While most of the management s t r a t e g i e s and a c t i v i t i e s used by the Chinese f a m i l i e s were s i m i l a r to those used by Caucasian informants i n other s t u d i e s , some i d e n t i f i e d i n t h i s study have been d e s c r i b e d by v a r i o u s authors as p a r t i c u l a r l y c h a r a c t e r i s t i c of the Chinese c u l t u r e . These i n c l u d e t r y i n g out and h e l p - s e e k i n g p a t t e r n s encompassed under the management s t r a t e g y of r e s o u r c i n g . T r y i n g out, i n v o l v e d t r y i n g a l t e r n a t i v e s i n the hope of f i n d i n g something t h a t a l t e r e d symptoms, reduced the p r o g r e s s i o n of the d i s e a s e , or i n c r e a s e d the p a t i e n t s ' r e s i s t a n c e to the d i s e a s e . T r y i n g a l t e r n a t i v e s i n c l u d e d the p r a c t i c e of u s i n g herbs and remedies but was a l s o used i n the s e l e c t i o n of p h y s i c i a n s , h e r b a l i s t s , or Chinese f o l k d o c t o r s . I t a l s o i n c l u d e d requests f o r ongoing treatment options t h a t were hoped t o l e a d to a cure. I f one a l t e r n a t i v e was p e r c e i v e d not t o be e f f e c t i v e , another was t r i e d . T h i s a c t i v i t y o f f e r e d the p a t i e n t ' s and f a m i l y members hope and a sense of c o n t r o l over the s i t u a t i o n . The p r a c t i c e of t r y i n g out was e v i d e n t i n the f i n d i n g s of a study which examined how a d u l t Chinese-Americans d e f i n e d and managed i l l n e s s (Louie, 1975). L i k e the present study, Louie's suggested t h a t t r y i n g out s u s t a i n e d hope and enabled c o n t r o l t o be gained over the i l l n e s s c o n d i t i o n . She found t h a t t r y i n g out continued even i f people knew t h a t the i l l n e s s was i n c u r a b l e , such as with advanced cancer. In such cases, t r y i n g out was aimed at o b t a i n i n g r e s p i t e from s u f f e r i n g (p. 199). L i k e those of the present study, the 125 s u b j e c t s i n Louie's study a l s o used the p r a c t i c e of t r y i n g out when seeking medical a s s i s t a n c e . She suggested t h a t most people go t o western d o c t o r s , and then t o indigenous h e a l e r s , a f t e r which they r e t u r n t o western d o c t o r s . T h i s was congruent with four o f the s i x p a t i e n t s i n the present study. Two had sought advice from a Chinese f o l k doctor p r i o r to c o n s u l t i n g with western doctors while the remaining four sought some form o f advice e i t h e r from a f o l k doctor or a h e r b a l i s t , e i t h e r a f t e r c o n s u l t i n g with western doctors or c o n c u r r e n t l y . ' Louie (1975) d e s c r i b e d some assumptions on which Chinese p a t i e n t s ' t r y i n g out was based. Her s u b j e c t s o f t e n used the expre s s i o n s " r o o t " and " f l a r e - u p " when d e s c r i b i n g the t r y i n g -out p r o c e s s . The imagery of p e r s i s t e n t symptoms i s t h a t " i l l n e s s has taken r o o t s i n the body" (p. 192). The goal was to get r i d of the source of the t r o u b l e by " s e v e r i n g r o o t s " . I f r o o t s were not severed, people would experience " f l a r e -ups" or r e c u r r i n g acute episodes o f a c h r o n i c i l l n e s s . T hreatening symptoms t h a t h a r r a s s e d people u n p r e d i c t a b l y caused them t o f e e l desperate (Louie, 1975). The f i n d i n g o f the present study r e v e a l e d t h i s same d e s p e r a t i o n i n the informants' uneasiness over the u n p r e d i c t a b i l i t y o f cancer. The informants i n the present study, however, d i d not make r e f e r e n c e t o " r o o t s " and " f l a r e -ups". These terms may have been evident i f the p a t i e n t s had a l s o been i n t e r v i e w e d i n the present study. T r y i n g out v a r i o u s kinds o f herbs or remedies, however, i s not 126 r e s t r i c t e d t o the Chinese c u l t u r e . Henderson and Primeaux (1981) suggested t h a t " i t i s wise to remember t h a t i n a l l e t h n i c communities both western and non-western medicines are used. To be aware of which medicines are accepted i s to be able t o care e f f e c t i v e l y f o r p a t i e n t s " (p. 76). The informants i n the present study d i d , however, view t h e i r a c t i o n s of t r y i n g out v a r i o u s herbs and remedies as being unique to the Chinese c u l t u r e . I t appeared t h a t the reasons behind the s e l e c t i o n and use of v a r i o u s a l t e r n a t i v e s was i n f l u e n c e d by c u l t u r a l t r a d i t i o n s and b e l i e f s . The p a t t e r n of h e l p - s e e k i n g d e s c r i b e d by the Chinese informants i n t h i s study was c o n s i s t e n t with d e s c r i p t i o n s presented by other r e s e a r c h e r s of the Chinese e t h n i c group (Kleinman, 1978; L a i , 1988; Louie, 1975). Resources and advice were sought or r e c e i v e d from the f a m i l y , community and s o c i a l networks, Chinese f o l k d octors and h e r b a l i s t s , and h e a l t h care p r o f e s s i o n a l s . These resource sources are encompassed w i t h i n Kleinman's (1978) c o n c e p t u a l i z a t i o n of the h e a l t h care system t h a t i s made up of t h r e e s o c i a l domains w i t h i n which, Kleinman suggests, s i c k n e s s i s experienced. Each of these domains the popular (family, s o c i a l network, and community), f o l k ( n o n p r o f e s s i o n a l h e a l e r s ) , and p r o f e s s i o n a l s has i t s own explanatory model f o r each i l l n e s s which i n f l u e n c e s how people p e r c e i v e , experience, and manage t h e i r s i c k n e s s (Kleinman, 1978). For example, the popular domain bases i t s explanatory model on p e r s o n a l and s o c i a l experiences of s i c k n e s s . On the other hand, the p r o f e s s i o n a l domain e x p l a i n s , understands, and manages i l l n e s s by f o c u s i n g 127 on b i o l o g i c a l and p s y c h o l o g i c a l aspects of the d i s e a s e . These d i f f e r e n t e x p l a n a t i o n s may complement, compete with, or d i s t o r t one another ( L a i , 1988). While i t was not c l e a r from the f i n d i n g s of the present study how the ex p l a n a t i o n s of the thr e e domains i n f l u e n c e d each other, i t was, however, evident t h a t the popular and p r o f e s s i o n a l domains i n f l u e n c e d the meaning given t o the s i t u a t i o n as w e l l as the i n f o r m a t i o n and a s s i s t a n c e r e c e i v e d by the informants' f a m i l i e s . /Among the th r e e domains, about 70 to 90 percent of h e a l t h care takes p l a c e i n the popular domain (Kleinman, 1978; L a i , 1988). These authors suggested t h a t most i l l n e s s episodes never e n t e r the p r o f e s s i o n a l or f o l k domains. When they d i d seek a s s i s t a n c e from these two domains, d e c i s i o n s about where and when to seek care, how long t o remain i n care, and how to ev a l u a t e treatment continued t o take p l a c e i n the popular domain, most commonly i n the context of the f a m i l y (Kleinman, Eisenberg, & Good, 1978). P a t i e n t s and f a m i l y members i n the present study r e l i e d h e a v i l y on t h e i r f a m i l y and f r i e n d s f o r advice and a s s i s t a n c e . They a l s o t u r n e d t o t h e i r s o c i a l network, i n p a r t i c u l a r t h e i r f r i e n d s , f o r f u r t h e r advice and h e l p . One informant p e r c e i v e d her f r i e n d s as having "connections" which would enable her to get the a s s i s t a n c e she r e q u i r e d t o manage her husband's care at home. A l l the f a m i l i e s , however, a l s o sought a s s i s t a n c e from the f o l k and p r o f e s s i o n a l domains. The informants i n d i c a t e d t h a t t h e i r f a m i l y members d i s c u s s e d the use of a l t e r n a t i v e s , such as Chinese f o l k d o c t o r s , but i t 128 was u n c l e a r i f they a l s o d i s c u s s e d seeking p r o f e s s i o n a l a s s i s t a n c e . The informants suggested t h a t t h e i r f a m i l y members p e r c e i v e d the western p h y s i c i a n as the expert f o r t r e a t i n g the i l l n e s s and r e l i e d on h i s or her advice f o r treatment d e c i s i o n s . I n t e r e s t i n g l y , these p h y s i c i a n s a l s o p r o v i d e d i n f o r m a t i o n and made r e f e r r a l s t o other western h e a l t h care p r o f e s s i o n a l s such as Home Care nurses. This r e l i a n c e on western p h y s i c i a n s may be e x p l a i n e d by the f a c t t h a t the p a t i e n t s and f a m i l y members p e r c e i v e d the p a t i e n t as being " s i c k " . L a i (1988) found i n her study w i t h e l d e r l y Chinese women managing di a b e t e s , t h a t the informants' e v a u l a t i o n of whether they were " s i c k " or "not s i c k " p l a y e d an important r o l e i n determining the type of h e a l t h care resources they u t i l i z e d . When they p e r c e i v e d themselves as " s i c k " , western h e a l t h care p r o f e s s i o n a l s were c o n s u l t e d . Another p o s s i b l e e x p l a n a t i o n c o u l d be t h a t the p a t i e n t s and f a m i l y members p e r c e i v e d the western physican as being most h e l p f u l at r e l i e v i n g t h e i r symptoms and who o f f e r e d the most hope f o r cure. Louie (1975) a l s o suggests t h a t s e l e c t i o n of p h y s i c i a n i s not j u s t based on treatement e f f i c a c y , but a l s o upon the manner i n which p a t i e n t s f e e l they have been t r e a t e d . There were mixed responses from the informants r e g a r d i n g the p h y s i c i a n s ' h e l p f u l n e s s : some f e l t they were mechanical while another informant d e s c r i b e d how c a r i n g and compassionate p h y s i c i a n was toward her husband. 129 I n f l u e n c e s of Past Experiences and S t y l e The i n f l u e n c e s of the p a t i e n t s ' and f a m i l y members' past p a t t e r n s of coping or behaving ( s t y l e ) and past experiences were evident throughout the b a l a n c i n g p r o c e s s . The manner and degree t o which these f a c t o r s i n f l u e n c e d the process were unique t o each f a m i l y . For some informants, t h e i r s t y l e or past experiences with the p a t i e n t s i n f l u e n c e d how they engaged i n b a l a n c i n g . For example, past f a m i l y r e l a t i o n s h i p s i n f l u e n c e d w i l l i n g n e s s to share the l o a d and the l e n g t h of d u r a t i o n f o r u s i n g the s t r a t e g y of a n t i c i p a t i n g . Past experiences with i l l n e s s , with managing i l l n e s s , and with death i n f l u e n c e d the a c t i v i t i e s a s s o c i a t e d with r e s o u r c i n g , gauging, and a n t i c i p a t i n g . Davies and c o l l e a g u e s ( i n press) a l s o found t h a t past experiences with l o s s and death i n f l u e n c e d how i n d i v i d u a l s and f a m i l i e s f aced the c u r r e n t s i t u a t i o n . The s t y l e of the p a t i e n t i n f l u e n c e d f a m i l y members' decision-making about whether to inform the p a t i e n t of the d i a g n o s i s . In order to p r o t e c t the p a t i e n t from "worry," they chose t o w i t h h o l d the i n f o r m a t i o n from them " u n t i l they had t o know." The p a t i e n t ' s p a t t e r n s of behaviour served as i n d i c a t o r s f o r gauging. The p a t i e n t ' s s t y l e a l s o i n c r e a s e d the c a r e g i v i n g demands p l a c e d on f a m i l y members when members attempted to honour p a t i e n t ' s wishes. The s t y l e the f a m i l y members had used i n the past continued to be d i s p l a y e d although some informants d i d d e s c r i b e a l t e r a t i o n s made to t h e i r p r e v i o u s p a t t e r n s of behaviour. These past s t y l e s were most p r e v a l e n t i n the a c t i v i t i e s a s s o c i a t e d w i t h t r y i n g out 130 and h e l p - s e e k i n g . C u l t u r a l I n f l u e n c e s The present study e x p l o r e d the i n f l u e n c e of c u l t u r a l b e l i e f s and p r a c t i c e s as w e l l as the i n f l u e n c e of the informants' degree of e t h n i c i d e n t i t y on i l l n e s s management. Comparisons between s t u d i e s conducted with Caucasian f a m i l i e s and the f i n d i n g s of the present study i n d i c a t e d t h a t the b a l a n c i n g process used by f a m i l y members i n managing p a t i e n t s ' care and everyday f a m i l y l i f e was not c u l t u r a l l y bound. B e l i e f s h e l d by the informants, p a t i e n t s , and f a m i l y members were found t o be i n f l u e n t i a l , however, on other aspects of i l l n e s s management and on t h e i r everyday l i v e s . For example, c e r t a i n r i t u a l ceremonies were performed on a r e g u l a r b a s i s , such as a n c e s t r a l worship and on " s p e c i a l o c c a s i o n s , " such as b i r t h s . The r i t u a l s performed and adherence t o these t r a d i t i o n a l p r a c t i c e s v a r i e d . Most r i t u a l s d e s c r i b e d i n t h i s study were not s p e c i f i c a l l y r e l a t e d t o i l l n e s s or care management. For those f a m i l i e s who adhered c l o s e l y t o t h e i r t r a d i t i o n a l p r a c t i c e s , the i n f l u e n c e of these p r a c t i c e s was evident i n behaviour d i r e c t e d at i l l n e s s e l i m i n a t i o n . For example, one spouse s p r i n k l e d water around t h e i r home t o sweep up "bad s p i r i t s . " However, they d i d not mention a s u p e r n a t u r a l reason f o r t h e i r a c t i o n s . In p a r t i c u l a r , the o p i n i o n h e l d by some western h e a l t h care p r o f e s s i o n a l s t h a t taboos a s s o c i a t e d with the d i a g n o s i s of cancer, h o s p i t a l i z a t i o n , and dying at home prevent Chinese 131 people from t a l k i n g about these t o p i c s was not supported. This i s not to say, however, t h a t other Chinese i n d i v i d u a l s may not h o l d these b e l i e f s . For i n s t a n c e , a recent survey completed with Chinese i n d i v i d u a l s found t h a t c e r t a i n t o p i c s such as h o s p i t a l i z a t i o n , w i l l s and death were indeed taboo (Saint E l i z a b e t h V i s i t i n g Nurses' A s s o c i a t i o n of Ontario, 1988) . B e l i e f s were a l s o found to i n f l u e n c e the reasons given f o r t h e i r a c t i o n s , t h e i r i n t e r p r e t a t i o n of t h e i r r o l e i n i l l n e s s management, and the s t r u c t u r e of the f a m i l y . Other authors have documented s i m i l a r i n f l u e n c e s (Chang, 1983; Chrisman, 1983; R o l l a n d , 1987; S p i n e t t a , 1984). The reasons gi v e n f o r such a c t i o n s as r e c i p r o c i t y , honouring the p a t i e n t s ' wishes, and the use of herbs were based on what the informants p e r c e i v e d to be b e l i e f s w i t h i n the Chinese c u l t u r e handed down from g e n e r a t i o n to g e n e r a t i o n . However, other r e s e a r c h e r s have d e s c r i b e d s i m i l a r l y h e l d b e l i e f s i n Caucasian s u b j e c t s (Davies et a l , i n p r e s s ) . B e l i e f s were i n t e r p r e t e d d i f f e r e n t l y and t h e r e f o r e , t h e i r i n f l u e n c e on a c t i o n s and meaning v a r i e d among the informants and t h e i r f a m i l y members. For example, the r o l e of the e l d e s t son i n the f a m i l y i s not the same i n each f a m i l y , as d e s c r i b e d e a r l i e r i n the R e s u l t s . The r e s u l t s of the study r e v e a l e d t h a t i t may be the e l d e s t daughter who i s c o n s i d e r e d the one w i t h the g r e a t e s t a u t h o r i t y i n the f a m i l y or the spokesperson not the e l d e s t son. G e n e r a l l y , when the p a t i e n t or parents were not f l u e n t i n E n g l i s h , a c h i l d who was f l u e n t i n E n g l i s h acted as the spokesperson f o r the f a m i l y . I t i s important t o 132 n o t e t h a t some Chinese f a m i l i e s p e r c e i v e d t h e r o l e o f t h e femal e s , i n c l u d i n g t h e w i f e , as b e i n g l e s s i n f l u e n t i a l i n t h e f a m i l y t h a n t h a t o f males. An i m p o r t a n t f i n d i n g o f t h i s s t u d y p e r t a i n e d t o t h e r o l e o f t h e f a m i l y i n i l l n e s s management and t h e importance g i v e n t o p a r t i c i p a t i o n o f t h e immediate and extended f a m i l y members i n i l l n e s s management. The m a j o r i t y (4/6) o f t h e i n f o r m a n t s i m p l i e d t h a t i t was t h e r o l e o f t h e f a m i l y t o make d e c i s i o n s f o r t h e p a t i e n t s and t o a c t as an i n t e r m e d i a r y between t h e p h y s i c i a n and t h e p a t i e n t . T h i s f i n d i n g was c o n s i s t e n t w i t h f i n d i n g s o f o t h e r r e s e a r c h e r s ( J a n o s i k , 1980; Kleinman, 1980; L o u i e , 1975). Kleinman (1980) found when i n t e r v i e w i n g C h i n e s e (Taiwanese and m a i n l a n d e r s ) p a t i e n t s and p h y s i c i a n s who p r a c t i c e b o t h w e s t e r n - s t y l e and C h i n e s e - s t y l e m e d i c i n e , t h a t p h y s i c i a n s e x p l a i n e d v i r t u a l l y n o t h i n g t o t h e p a t i e n t . They aimed t h e i r remarks a t t h e f a m i l y members whose job i t was t o sup p o r t t h e p a t i e n t . S i n c e t h e f a m i l y , not t h e p a t i e n t , commonly made t h e c r u c i a l d e c i s i o n s about t r e a t m e n t o f s e r i o u s s i c k n e s s e s , t h e p a t i e n t d i d not see h i m / h e r s e l f as ne e d i n g such i n f o r m a t i o n (Kleinman, 1980, p. 283). Kleinman (1980) suggested t h a t t h i s has major b e n e f i t s f o r t e r m i n a l p a t i e n t s "because t h e y were never i s o l a t e d from f a m i l y nor c u t o f f from t h e c o n t e x t s o f meaning and s u p p o r t " (p. 281). T h i s p r a c t i c e has i m p l i c a t i o n s f o r t h e congruency o f t h e h o s p i c e p h i l o s o p h y w i t h C hinese f a m i l y members' p e r c e p t i o n o f t h e i r r o l e i n c a r i n g f o r t h e t e r m i n a l l y i l l . The h o s p i c e approach t o t e r m i n a l c a r e advocates f o r t h e 133 p a r t i c i p a t i o n of the p a t i e n t i n decision-making and f o r h i s or her being informed about the d i a g n o s i s . T h i s p h i l o s o p h y i s , however, incongruent with Chinese f a m i l y members' p e r c e p t i o n of t h e i r r o l e and the r o l e of the p a t i e n t . Two f a m i l i e s w i t h h e l d the d i a g n o s i s of cancer from the p a t i e n t i n the present study. T h i s d e c i s i o n was d e s c r i b e d as being based on t h e i r knowledge of the p a t i e n t s ' s t y l e and p a t t e r n of worrying and served as the f a m i l y ' s way of p r o t e c t i n g the p a t i e n t from bad news. The e x p e c t a t i o n h e l d by the informants and f a m i l y members t h a t they were o b l i g a t e d t o p a r t i c i p a t e i n c a r e g i v i n g was evident i n the m a j o r i t y (5/6) of the Chinese f a m i l i e s . Other s t u d i e s with Chinese informants have xeported s i m i l a r e x p e c t a t i o n s (Chang, 1983). However, i n one f a m i l y , past experiences with the p a t i e n t , p a t i e n t s t y l e , and f a m i l y s t y l e were found to be o v e r r i d i n g f a c t o r s which reduced the f a m i l y members' w i l l i n g n e s s t o adhere to the commonly h e l d b e l i e f of r e c i p r o c i t y . Davies and a s s o c i a t e s ( i n press) a l s o found t h a t past experiences and s t y l e ( i n d i v i d u a l and family) i n f l u e n c e d how the p a t i e n t s and f a m i l y members fa c e d the t a s k s of t r a n s i t i o n of f a d i n g away. In p a r t i c u l a r , Davies and a s s o c i a t e s ( i n press) found t h a t past experiences with l o s s ' and death, past f a m i l y r e l a t i o n s h i p s , the s t y l e of each member, and the f a m i l y u n i t s ' s t y l e i n f l u e n c e d how they managed the t a s k s they faced. The c r i t i c a l l i t e r a t u r e on the s u b j e c t documented t h a t degree of e t h n i c i d e n t i t y i n f l u e n c e d behaviour although l i t t l e was known about i t s i n f l u e n c e on h e a l t h - r e l a t e d 134 behaviour. Although only l i m i t e d c o n c l u s i o n s can be drawn from t h i s study r e g a r d i n g the i n f l u e n c e of e t h n i c i d e n t i t y are l i m i t e d , r e s u l t s suggest t h a t t h e r e i s merit i n determining the f a m i l y members' degree of e t h n i c i t y or a c c u l t u r a t i o n . R e l a t i o n s h i p s were evident between the informants' degree of e t h n i c i d e n t i t y and t h e i r adherence to c u l t u r a l p r a c t i c e s . The same may be found i f the e t h n i c i d e n t i t y of the f a m i l y as a u n i t was analyzed. This may a l e r t h e a l t h care p r o f e s s i o n a l s t o i n v e s t i g a t e the extent to which the b e l i e f s h e l d by the f a m i l y i n f l u e n c e t h e i r behaviour and t h e i r w i l l i n g n e s s to accept western h e a l t h care p r a c t i c e s . Four v a r i a b l e s t h a t were found not to i n f l u e n c e degree of the informants' e t h n i c i d e n t i t y were l o c a t i o n of o r i g i n , years i n Canada, age, and gender. P a t t e r n s commonly a s s o c i a t e d with a p a r t i c u l a r l o c a t i o n of o r i g i n may have been found had the informant group been l a r g e r . Other r e s e a r c h e r s have r e p o r t e d t h a t groups of informants from the same area have some s i m i l a r i t i e s . For example, Chang (1983) found t h a t the informants i n her study from Taiwan made g r e a t e r use of h e r b a l i s t s than respondents from Hong Kong and those born i n the U n i t e d S t a t e s . S p i n e t t a (1984) found t h a t Vietnamese s u b j e c t s d i d not want to p a r t i c i p a t e i n decision-making r e g a r d i n g t h e i r leukemic c h i l d ' s c a r e . They expected the p h y s i c i a n , viewed as the expert, t o make the d e c i s i o n s . I t was found t h a t few f a m i l i e s c l e a r l y understood nu r s i n g ' s r o l e i n a s s i s t i n g them to manage care or even what s e r v i c e s e x i s t e d or how t o access them. This l a c k of 135 awareness may be a s s o c i a t e d with the f a c t t h a t the s e r v i c e s had not been needed i n the p a s t . Language b a r r i e r s were c o n s i s t e n t l y i d e n t i f i e d as the most common problem faced by non-E n g l i s h speaking p a t i e n t s , f a m i l y members, and v i s i t o r s i n h o s p i t a l . Chang (1983) suggested t h a t language b a r r i e r s were one reason e l d e r l y Chinese p a t i e n t s p r e f e r r e d t o seek help from a p r i v a t e p h y s i c i a n who may speak t h e i r d i a l e c t of Chinese r a t h e r than from p u b l i c h e a l t h c e n t e r s or c l i n i c s . In the present study, the l a c k of support personnel and h e a l t h care p r o f e s s i o n a l s , i n p a r t i c u l a r , nurses, able t o speak or communicate i n Chinese l i m i t e d the a v a i l a b i l i t y o f needed support. The l a c k of Chinese speaking personnel c r e a t e d a d d i t i o n a l demands f o r t r a n s l a t i n g t o the E n g l i s h - s p e a k i n g members of the f a m i l y . While most informants d i d not p e r c e i v e t r a n s l a t i n g as an added r e s p o n s i b i l i t y , knowing the p a t i e n t c o u l d not communicate with the nurses heightened the f a m i l y members' an x i e t y and sense o f u n c e r t a i n t y . Food d i f f e r e n c e s were a l s o c o n s i d e r e d t o be pr o b l e m a t i c f o r some p a t i e n t s while i n h o s p i t a l . Some f a m i l y members e l e c t e d t o b r i n g i n Chinese food and herb soups f o r the p a t i e n t s . Although these foods i n c r e a s e d the p a t i e n t s ' w e l l being, at the same time i t i n c r e a s e d the demands on the f a m i l y members' time. L o c a t i o n of Care  Preference f o r Care at Home Un l i k e most of the s t u d i e s presented i n the review of the l i t e r a t u r e , the present study e x p l o r e d the p r e f e r e n c e o f Chinese f a m i l i e s f o r l o c a t i o n of care of t h e i r i l l f a m i l y 136 members and the f a c t o r s which i n f l u e n c e d t h i s c h o i c e . R e s u l t s i n d i c a t e d the m a j o r i t y o f the informants b e l i e v e d t h e i r f a m i l i e s p r e f e r r e d care at home over care i n the h o s p i t a l . These f i n d i n g s are c o n s i s t e n t with the work of Davies and her co l l e a g u e s ( i n p r e s s ) . The e i g h t Caucasian f a m i l i e s ( p a t i e n t , spouse and c h i l d ) who p a r t i c i p a t e d i n Davies and c o l l e a g u e s ' study c l e a r l y a r t i c u l a t e d t h a t they p r e f e r r e d care at home over care i n the h o s p i t a l or i n an i n s t i t u t i o n , such as n u r s i n g homes. Reasons c i t e d f o r t h i s p r e f e r e n c e were s i m i l i a r i n both s t u d i e s . In both s t u d i e s , informants p r e f e r r e d home because the home environment o f f e r e d a sense o f normalcy and freedom, and enabled them t o "give back" t o the p a t i e n t what they owed them. These p e r c e p t i o n s were shared by both c h i l d r e n and spouses i n Davies and c o l l e a g u e s ' study whereas, i n the present study, r e c i p r o c i t y was h e l d mainly by the c h i l d r e n i n the f a m i l y . T h i s d i f f e r e n c e may be due to mostly having c h i l d r e n informants r a t h e r than an equal number of c h i l d r e n and spouses. The extent t o which Chinese f a m i l y members' a c t i o n s were i n f l u e n c e d by t h e i r sense o f r e c i p r o c i t y appeared t o be d i f f e r e n t from the Caucasian f a m i l i e s i n Davies and c o l l e a g u e s ' study. The Chinese informants conveyed t h a t Chinese t r a d i t i o n d i c t a t e s t h a t e l d e r l y f a m i l y members and parents r e c e i v e r e s p e c t , care, and support from the younger g e n e r a t i o n . T h i s b e l i e f i s a t t r i b u t e d t o the p r i n c i p l e s of f i l i a l p i e t y or "Hsaio Ching" which e x p l a i n s : the r e s p o n s i b i l i t y a son or daughter has f o r the 137 parents i s t o gi v e r e s p e c t , honor and devotion, and p r o v i d e f o r the happiness and f i n a n c i a l needs of the persons. (Chang, 1983, p. 81) Th i s concept o f Hsiao Ching was d e r i v e d from the tea c h i n g s of Confucius, which i n c l u d e s b a s i c p r i n c i p l e s p e r t a i n i n g t o a person's r e l a t i o n s h i p s with h i s or her parents and d e s c r i b e s behaviour expected o f a l l human beings (Chang, 1983; Janosik, 1980; Louie, 1975). The r e s p o n s i b i l i t y t o care f o r one's parents i s seen not only as an o b l i g a t i o n but as an op p o r t u n i t y and a source o f joy. In a study of e l d e r l y Chinese i n Los /Angeles, Wu (1975) suggested t h a t Chinese f a m i l i e s had become so Americanized t h a t " f i l i a l p i e t y " had l o s t i t s p l a c e . However, the f i n d i n g s of the c u r r e n t study would d i s p u t e Wu's suggestion. Two of the reasons given by the Chinese informants f o r p r e f e r r i n g care at home, honoring the p a t i e n t s ' wishes and the a t t e n t i o n given t o the p a t i e n t s ' happiness, suggest t h a t the son/daughter informants may have been s o c i a l i z e d w i t h i n the context o f these t r a d i t i o n a l b e l i e f s and v a l u e s . F a c t o r s I n f l u e n c i n g Home Care Experience Preference f o r care at home was contingent on four b a s i c f a c t o r s : c a r e g i v e r a v a i l a b i l i t y and a b i l i t y , adequacy of f a m i l y support, f a m i l y p h y s i c i a n advice, and the p a t i e n t s ' p h y s i c a l c o n d i t i o n and symptom c o n t r o l . While a l l the f a m i l i e s accessed v a r y i n g degrees o f e x t e r n a l resources t o a s s i s t i n b a l a n c i n g the demands, they d i d not expect h e a l t h care personnel and support s e r v i c e s t o maintain care at home. The Chinese informants b e l i e v e d i t was the e x i s t e n c e or l a c k 138 of f a m i l y support and c a r e g i v e r a b i l i t y which made home care p o s s i b l e or im p o s s i b l e . In c o n t r a s t , Davies and c o l l e a g u e s ( i n press) found t h a t one f a c t o r which determined the success of the home care experience f o r t h e i r e i g h t Caucasian f a m i l i e s was the nature of the home care s e r v i c e s p r o v i d e d by l o c a l Home Care programs. Such s e r v i c e s were h e l p f u l only i f they were p r o v i d e d t o the extent b e l i e v e d necessary by the p a t i e n t and f a m i l y members. When support s e r v i c e s d i d not meet e x p e c t a t i o n s , f a m i l y f r u s t r a t i o n i n c r e a s e d . While the Chinese informants of t h i s study d i d not express f r u s t r a t i o n r e g a r d i n g l e v e l of s e r v i c e , one informant found the l a c k o f Chinese-speaking homemakers f r u s t r a t i n g and " u s e l e s s " . Since the f a m i l i e s , i n the present study, r e l i e d on p h y s i c i a n ' s advice, t h e i r a s s i s t a n c e i n m a i n t a i n i n g f a m i l y care management i n the home was c r u c i a l . T h e i r understanding of the r o l e of other h e a l t h care p r o f e s s i o n a l s i n the community was a l s o c r i t i c a l i n terms of r e f e r r a l s . T h i s same r e l i a n c e was not i d e n t i f i e d i n Davies and c o l l e a g u e s ' f i n d i n g s ( i n p r e s s ) . /Another d i f f e r e n c e t h a t e x i s t e d between the f i n d i n g s o f the two s t u d i e s ' f i n d i n g s was a s s o c i a t e d with the p h y s i c a l environment. Davies and c o l l e a g u e s ( i n press) found t h a t the home environment was o f t e n inadequate owing t o the presence of s t a i r s which l i m i t e d the p a t i e n t s ' a b i l i t y t o move w i t h i n the home or to go outdoors. The informants i n the present study d i d not d e s c r i b e o b s t a c l e s a s s o c i a t e d with p h y s i c a l environment of the home. When the p a t i e n t c o u l d no longer go 139 up s t a i r s , the f a m i l y accommodated by making necessary adjustments. For one f a m i l y , t h i s meant t h a t the p a t i e n t remained i n the basement and members ate with her t h e r e . L i k e the f i n d i n g s of Davies and c o l l e a g u e s ( i n p r e s s ) , the p a t i e n t s ' p h y s i c a l c o n d i t i o n was a major f a c t o r which i n f l u e n c e d the sucess of care at home. M o b i l i t y and symptom c o n t r o l were p r i m a r i l y i d e n t i f i e d as determining the f e a s i b i l i t y of home ca r e . In f a c t , i n the present study, i n c r e a s i n g immobility, p h y s i c a l dependency, and u n c o n t r o l l e d p a i n and dyspnea were found t o be determinants f o r h o s p i t a l i z a t i o n . F a c t o r s I n f l u e n c i n g D e c i s i o n to H o s p i t a l i z e When f a m i l y members f e l t t h a t some aspect of the s i t u a t i o n was out of c o n t r o l or beyond t h e i r a b i l i t y t o manage at home, to c o n t r o l the i l l n e s s and symptoms, they deemed h o s p i t a l i z a t i o n was necessary. A l a c k of " a b i l i t y " was d e s c r i b e d i n terms of p h y s i c a l s t r e n g t h and " e x p e r t i s e " which they p e r c e i v e d h e a l t h care p r o f e s s i o n a l s t o have. The informants d i d not a r t i c u l a t e " a b i l i t i e s " i n terms of knowledge or s k i l l t o care f o r the p a t i e n t , which the f a m i l i e s i n Davies and c o l l e a g u e s ' ( i n press) d i d . The informants i n both s t u d i e s b e l i e v e d t h a t the p a t i e n t s would r e c e i v e " b e t t e r c a r e " i n the h o s p i t a l . The stereotype t h a t Chinese view the h o s p i t a l s e t t i n g as a p l a c e of death or surrounded by taboo was not supported by the r e s u l t s of t h i s study. No s u p e r s t i t i o n s were i d e n t i f i e d i n terms of the h o s p i t a l environment. Had the informants i n c l u d e d e l d e r l y Chinese, the r e s u l t s might have been 140 d i f f e r e n t . The informants suggested t h a t e l d e r l y persons' b e l i e f s are more i n f l u e n c e d by Chinese t r a d i t i o n a l s u p e r s t i t i o n s than the b e l i e f s of persons who are younger. Other c u l t u r a l b a r r i e r s , however, d i d e x i s t . Language b a r r i e r s and d i s l i k e of Canadian food were c i t e d as reasons p a t i e n t s d i s l i k e d and, i n some cases, f e a r e d the h o s p i t a l environment. I n a b i l i t y t o communicate with the nurses and other p a t i e n t s r e s u l t e d i n c o n f u s i o n f o r one e l d e r l y p a t i e n t . Being p l a c e d behind c l o s e d c u r t a i n s away from a window with the l i g h t s dimmed d u r i n g the day r e s u l t e d i n d i s o r i e n t a t i o n about time of day and space. For most of the p a t i e n t s , t h i s episode of h o s p i t a l i z a t i o n was t h e i r f i r s t experience and f r i g h t e n e d them. Dying i n H o s p i t a l The r e s u l t s of t h i s study r e v e a l e d d e c i s i o n s r e g a r d i n g where the informants p r e f e r r e d the p a t i e n t t o d i e . A l l informants p r e f e r r e d the h o s p i t a l although t h r e e s a i d they had not given i t "much thought". The informants p e r c e i v e d t h a t care needed near and at death r e q u i r e d added e x p e r t i s e which h e a l t h care p r o f e s s i o n a l s had and they had not. D i s c u s s i n g where death would occur aroused deep sadness i n the informants. To t a l k about the p a t i e n t s death meant being faced w i t h the i n e v i t a b l e , t h e i r l a c k of c o n t r o l over the s i t u a t i o n , and the l o s s of hope. While other s t u d i e s have examined where death o c c u r r e d ( B r e s c i a , Sadof, Barstow, 1984; Ward, 1974), none was found t h a t r e p o r t e d the f a m i l i e s ' p r e f e r e n c e or whether the i n f l u e n c e of e t h n i c i t y was 141 con s i d e r e d . In summary/ from t h i s d i s c u s s i o n of the f i n d i n g s , i t was e x p l a i n e d t h a t Chinese f a m i l i e s manage the demands of c a r e g i v i n g and everyday f a m i l y l i f e through the process of b a l a n c i n g . Past experiences and s t y l e o f p a t i e n t s and f a m i l y members were d e s c r i b e d as i n f l u e n c i n g the process i t s e l f ; however, c u l t u r a l b e l i e f s d i d not. C u l t u r a l i n f l u e n c e s were evident i n f a m i l y members' s p e c i f i c a c t i o n s and reasons g i v e n f o r t h e i r a c t i o n s . Preference f o r l o c a t i o n of care was the home s e t t i n g although t h i s p r e f e r e n c e was contingent on four f a c t o r s . The r e s u l t s a l s o r e v e a l e d t h a t the informants p r e f e r r e d the p a t i e n t t o d i e i n the h o s p i t a l s e t t i n g In the next s e c t i o n , the i m p l i c a t i o n s of these f i n d i n g s f o r n u r s i n g p r a c t i c e and res e a r c h , and the l i m i t a t i o n and st r e n g t h s o f t h i s study are presented. NURSING IMPLICATIONS The purpose of t h i s study was to expl o r e 1) how Chinese f a m i l i e s manage care o f a f a m i l y member wit h advanced cancer i n the home and h o s p i t a l , 2) what f a c t o r s a f f e c t care management, 3) what was the i n f l u e n c e o f c u l t u r a l b e l i e f s and p r a c t i c e s on c a r e g i v i n g , and 4) what was the p r e f e r e n c e i n l o c a t i o n o f care. The r e s u l t s were based upon one f a m i l y members xs p e r s p e c t i v e of how t h e i r f a m i l y f u n c t i o n e d . The process of b a l a n c i n g t h a t evolved from the conceptual a n a l y s i s w i l l r e q u i r e a d d i t i o n a l i n v e s t i g a t i o n w i t h more i n d i v i d u a l s i n other e t h n i c groups, as w e l l as from Chinese f a m i l i e s , t o ensure i t s v a l i d i t y b e f o r e i t can be assumed as a guide f o r n u r s i n g p r a c t i c e with p a t i e n t s and f a m i l i e s 142 e x p e r i e n c i n g advanced cancer. The i m p l i c a t i o n s of t h i s study are c o n f i n e d to two areas: n u r s i n g p r a c t i c e and n u r s i n g r e s e a r c h . I m p l i c a t i o n s f o r n u r s i n g education stem from the i m p l i c a t i o n s f o r p r a c t i c e and are s p e c i f i c a l l y presented. I m p l i c a t i o n s For Nursing P r a c t i c e  Supporting the B a l a n c i n g Process Knowing t h a t the f a m i l i e s are b a l a n c i n g m u l t i p l e demands d i r e c t s nurses to assess not j u s t the c a r e g i v i n g demands but a l s o the f a m i l y demands of f a m i l y members i n v o l v e d . Focusing only on the p a t i e n t ' s p h y s i c a l symptoms or needs leads to misconceptions of the nurse's r o l e i n h e a l t h care and l i m i t s the support p e r c e i v e d by the f a m i l y members. Assessment should a l s o i n c l u d e i d e n t i f y i n g f a m i l y members and f r i e n d s i n v o l v e d i n s h a r i n g and resource u t i l i z a t i o n . Nurses can then o f f e r a s s i s t a n c e by s u p p o r t i n g f a m i l y e f f o r t s i n t h i s p r o c e s s . I t appeared from the f i n d i n g s t h a t f a m i l i e s d i d not understand what s e r v i c e s were a v a i l a b l e to a s s i s t them. E a r l y c o n t a c t s with f a m i l i e s can be used by nurses to communicate the r o l e of the v a r i o u s h e a l t h care p r o f e s s i o n a l s and support s e r v i c e s a v a i l a b l e , i n c l u d i n g how to request such s e r v i c e s , e s p e c i a l l y f o r f a m i l i e s w i t h l i m i t e d immediate or extended f a m i l y members a v a i l a b l e or w i l l i n g t o a s s i s t i n the b a l a n c i n g p r o c e s s . Nurses should not assume t h a t f a m i l i e s need help from h e a l t h care p r o f e s s i o n a l s or support s e r v i c e s u n t i l they have made an assessment of the f a m i l y members and f r i e n d s t h a t are a l r e a d y a s s i s t i n g the f a m i l y . Assessment of t h i s network 143 would be u s e f u l f o r f u t u r e p l a n n i n g as the c a r e g i v i n g demands i n c r e a s e . By knowing of the use of the popular and f o l k domains, nurses can help p a t i e n t s and f a m i l y members m o b i l i z e support. At the same time, nurses can assess the i n f o r m a t i o n and advice p a t i e n t s r e c e i v e to determine i t s congruency wi t h western h e a l t h care p r a c t i c e s . Nurses should o f f e r i n f o r m a t i o n to c o r r e c t any misconceptions about the i l l n e s s , i t s p r ognosis, and treatment o p t i o n s i n a g e n t l e manner, ens u r i n g t h a t E n g l i s h - s p e a k i n g c h i l d r e n are a v a i l a b l e to prevent f u r t h e r misunderstandings. The nurse must o f f e r support i n a manner t h a t r e i n f o r c e s r e a l i s t i c hope f o r f a m i l i e s as they come to terms with the i n e v i t a b l e . Nurses can support a c t i o n s t h a t o f f e r c o n t r o l over the s i t u a t i o n , such as t r y i n g out a l t e r n a t i v e s and h e r b a l use, s u p p o r t i n g a c t i v i t i e s a s s o c i a t e d with a n t i c i p a t i n g , while at the same time a s s i s t i n g them t o r e c o g n i z e t h a t r e s p i t e care f o r themselves i s e s s e n t i a l i f they are going to maintain the v i g i l over time. Nurses should o f f e r f a m i l i e s i n f o r m a t i o n about the f a c t t h a t they are going through a p e r i o d of great change and adjustment, t h a t the f e e l i n g s of u n c e r t a i n t y and c o n f u s i o n are normal, given t h e i r s i t u a t i o n . Acknowledging t h a t j u g g l i n g takes a great d e a l of e f f o r t and work may a s s i s t f a m i l y members to recognize the need f o r r e s p i t e care. Informants had d i f f i c u l t y i n i d e n t i f y i n g the nurses' r o l e i n h e a l t h c a r e . With s o c i e t a l t r e n d s t h a t l e a n towards s e l f - c a r e and care at home, nurses have important r o l e s to p l a y i n demonstrating the n u r s i n g p r a c t i c e r e l e v a n t to the 144 s i t u a t i o n , such as a c t i n g as i n f o r m a t i o n resources, a source of support, and f a m i l y advocates i n h e a l t h decision-making. Nurses must be s e n s i t i v e to p a t i e n t and f a m i l y members' needs and help them l e a r n about ch o i c e s a v a i l a b l e to them. Nurses are a l s o able to p r o v i d e i n f o r m a t i o n t h a t can help to i n c r e a s e f a m i l y members' knowledge and s k i l l i n c a r e g i v i n g . They must o f f e r i n s t r u c t i o n s on b a s i c s k i l l s t h a t f a c i l i t a t e c a r e g i v i n g i n home such as t r a n s f e r s and a c t i v i t i e s of d a i l y l i v i n g r a t h e r than w a i t i n g f o r f a m i l i e s to request the h e l p . F i n d i n g s demonstrated t h a t f a m i l y members may not be aware of t h e i r l a c k of knowledge, and, t h e r e f o r e they r i s k i n j u r y when adequate i n s t r u c t i o n i s not p r o v i d e d . I d e a l l y , nurses who care f o r the p a t i e n t and f a m i l y w h ile i n h o s p i t a l should a s s i s t i n p l a n n i n g necessary support while at home. Having one person c o o r d i n a t e care between home and h o s p i t a l would reduce some of the c o n f u s i o n about the r o l e of resources and l i m i t the number of times E n g l i s h -speaking c h i l d r e n must s h i f t t h e i r o b l i g a t i o n s to t r a n s l a t e f o r t h e i r p a r e n t s . S t r a t e g i e s f o r f a c i l i t a t i n g l i a i s o n and communication between h o s p i t a l and community need to be e x p l o r e d . One o p t i o n t h a t may be e f f e c t i v e i n f a c i l i t a t i n g communication i s t o have a t r a n s l a t o r a v a i l a b l e when making pla n s with the n o n - E n g l i s h speaking f a m i l y members. I t was found t h a t p h y s i c i a n s p l a y e d an i n t e g r a l r o l e i n how the f a m i l i e s managed c a r e g i v i n g . They were p e r c e i v e d as experts and decision-makers r e g a r d i n g i l l n e s s management. The p h y s i c i a n a l s o put the f a m i l y i n contact with other 145 r e s o u r c e s . C l e a r l y , nurses must develop a s t r o n g c o l l a b o r a t i v e working r e l a t i o n s h i p with the p h y s i c i a n , assess the p h y s i c i a n ' s knowledge base about n u r s i n g ' s r o l e , and communicate with her or him on a r e g u l a r b a s i s r e g a r d i n g the p l a n o f care and the f a m i l y ' s coping. The f i n d i n g s i n d i c a t e d t h a t past experiences and the s t y l e of i n d i v i d u a l s and the f a m i l y i n f l u e n c e the b a l a n c i n g p r o c e s s . The Chinese f a m i l i e s had t h e i r own s t y l e t h a t i n f l u e n c e d how they d e a l t with the s i t u a t i o n . Assessment of experiences with l o s s e s , r e l a t i o n s h i p s with the p a t i e n t and i n the fa m i l y , the s t y l e of the p a t i e n t and f a m i l y i n d e a l i n g with past s i t u a t i o n s w i l l p r o v i d e i n s i g h t i n t o p a t t e r n s of behaviour t o f o s t e r and w i l l i d e n t i f y areas f o r i n t e r v e n t i o n . Informants d e s c r i b e d a c t i o n s of nurses which were p e r c e i v e d as h e l p f u l i n coping with the s t r a i n of the s i t u a t i o n and i n c a r e g i v i n g . They d e s c r i b e d the f o l l o w i n g as important: t r e a t i n g the p a t i e n t as a "human bei n g " and an " i n d i v i d u a l " r a t h e r than "being mechanical," being compassionate and f r i e n d l y , b e i n g a t t e n t i v e t o p a t i e n t s and t a k i n g time t o care f o r them, demonstrating genuine c a r i n g , t a k i n g time t o answer questions, being p a t i e n t with f a m i l y members when they were anxious, and p r o v i d i n g i n f o r m a t i o n when requested. Two informants found i n f o r m a t i o n about symptom c o n t r o l , i n p a r t i c u l a r , p a i n , h e l p f u l i n managing care at home. Focusing on the Family The f i n d i n g s demonstrate the need f o r nurses t o develop s k i l l s i n a s s e s s i n g , p l a n n i n g , and i n t e r v e n i n g with f a m i l i e s 146 as u n i t s r a t h e r than with i s o l a t e d i n d i v i d u a l s i f they are to p r o v i d e r e s p o n s i b l e n u r s i n g c a r e . Family members were a l s o e x p e r i e n c i n g the impact of the s i t u a t i o n , which was e x h i b i t e d i n s t r e s s - r e l a t e d p a i n , l o s s of s l e e p , and a n x i e t y . T h e i r needs are not addressed through care o r i e n t e d s o l e y toward the i l l members, but they are c e n t r a l t o care management. Assessment of f a m i l i e s should i n c l u d e g a t h e r i n g i n f o r m a t i o n about the impact of the s i t u a t i o n on the f a m i l y members and p a t i e n t s , examine the meaning given to the d i a g n o s i s and s i t u a t i o n , review the r o l e changes t h a t have o c c u r r e d i n c l u d i n g r e d i s t r i b u t i o n of these r e s p o n s i b i l i t i e s , and i d e n t i f y the number and r o l e s of members p a r t i c i p a t i n g i n the b a l a n c i n g p r o c e s s . T h i s assessment would p r o v i d e the b a s i s t o determine the adequacy of resources to support the p r o c e s s s . Because the main c a r e g i v e r was o f t e n the spouse, the spouse's w e l l being should be assessed to determine sources of support and p e r c e i v e d a b i l i t y t o manage the r e s p o n s i b i l i t i e s of c a r e g i v i n g and everyday f a m i l y demands. The f a m i l y member who assumed the major r e s p o n s i b i l i t i e s f o r care may need t o be p r o t e c t e d from being overburdened. The nurse must be attuned to the changing r o l e s of a l l f a m i l y members and i n t e r v e n e t o meet these needs when p o s s i b l e . The f i n d i n g s r e v e a l e d t h a t f a m i l y members may be anxious t o honour the p a t i e n t s ' wishes. They d i d not q u e s t i o n t h i s o b l i g a t i o n , i n most cases, but they d i d gauge t h e i r resources and a b i l i t i e s t o manage the a d d i t i o n a l r e s p o n s i b i l i t i e s . Nurses must be a l e r t t o u n r e a l i s t i c e x p e c t a t i o n s of the 147 p a t i e n t s and i n t e r v e n e through i n t e r a c t i o n s with the f a m i l y members t o o f f e r a d d i t i o n a l resources and guidance. The f i n d i n g s i n d i c a t e d t h a t p a t i e n t s o f t e n wish t o go home because o f t h e i r d i s l i k e or f e a r o f the h o s p i t a l s e t t i n g . Nurses must assess and a s s i s t t o a l l a y these f e e l i n g s , i f p o s s i b l e . The informants' comments t h a t they b e n e f i t t e d from the i n t e r v i e w process and f e l t r e l i e f from s h a r i n g t h e i r thoughts and f e e l i n g s suggests t h a t they may b e n e f i t from nurses promoting and f a c i l i t a t i n g o p p o r t u n i t i e s f o r such d i s c l o s u r e . Family u n i t s may a l s o b e n e f i t from group d i s c u s s i o n s ; however, s i n c e informants p e r c e i v e d t h e i r f a m i l i e s as unique, each f a m i l y would need t o be approached i n d i v i d u a l l y t o ap p r a i s e i t s comfort and w i l l i n g n e s s t o d i s c u s s concerns as a group. The f i n d i n g s i n d i c a t e d t h a t some f a m i l i e s f e l t r e l i e f when the p a t i e n t was admitted t o the h o s p i t a l while others p e r c e i v e d added burden. Most f a m i l i e s kept a v i g i l at the p a t i e n t ' s bedside. Nurses can a l l a y f a m i l y members' f e a r s and reduce t h e i r burden by o f f e r i n g emotional support, a r r a n g i n g r e s t f a c i l i t i e s near the p a t i e n t ( i f a p p r o p r i a t e ) , and dev e l o p i n g a method of communicating with p a t i e n t s who do not speak E n g l i s h , thereby r e a s s u r i n g f a m i l y members t h a t the p a t i e n t ' s needs are understood. Understanding C u l t u r a l I n f l u e n c e s The f i n d i n g s of t h i s study suggest t h a t nurses must develop s k i l l s t o exp l o r e p a t i e n t s ' and f a m i l y members' b e l i e f s and p r a c t i c e s which i n f l u e n c e t h e i r a c t i o n s . T h i s 148 would i n c l u d e a s s e s s i n g reasons behind t h e i r a c t i o n s ; r i t u a l s which o f f e r emotional support and hope f o r the p a t i e n t s and f a m i l y members; p r a c t i c e s i n r e l a t i o n t o " t r y i n g out" a l t e r n a t i v e s such as herbs and other treatment o p t i o n s ; r o l e of the f a m i l y i n i l l n e s s management; r o l e of females and males w i t h i n the Chinese f a m i l y s t r u c t u r e ; and a s s e s s i n g i f a spokesperson e x i s t s w i t h i n the f a m i l y . Determining the degree of adherence t o t r a d i t i o n a l f a m i l y s t r u c t u r e s and t h e i r view of the f a m i l y ' s r o l e guides the nurses' a c t i o n s when d i s s e m i n a t i n g i n f o r m a t i o n t o f a m i l y members and when r e q u e s t i n g p a r t i c i p a t i o n i n p l a n n i n g and decision-making f o r the p l a n of care. Nurses should a v o i d assuming t h a t the wife w i l l make d e c i s i o n s r e g a r d i n g the p a t i e n t ' s care or t h a t the e l d e s t son i s the spokesperson f o r the f a m i l y . When c r i t i c a l d e c i s i o n s must be made r e g a r d i n g the p a t i e n t s ' care, i n c l u s i o n o f E n g l i s h - s p e a k i n g c h i l d r e n i s c r i t i c a l t o a v o i d any misunderstandings and unnecessary r e p e t i t i o n of i n f o r m a t i o n . The s p e c i f i c s k i l l s r e q u i r e d o f nurses may i n c l u d e keeping an open mind when r e l a t i n g t o Chinese p a t i e n t s and f a m i l y members, acknowledging t h a t d i v e r s i t y e x i s t s between and among Chinese i n d i v i d u a l s and f a m i l i e s , a t t e n t i v e l y l i s t e n i n g t o reasons given f o r a c t i o n s and r e s p e c t i n g the reason given and a c c e p t i n g d i f f e r e n c e s from western p r a c t i c e s . Besides e x p l o r i n g the p a t i e n t s ' and f a m i l y members' explanatory models and b e l i e f s , i t i s a l s o c r u c i a l t h a t nurses examine t h e i r own explanatory models and b e l i e f s . 149 D i f f e r e n c e s may e x i s t between nurses' e x p l a n a t i o n s of i l l n e s s and p r e f e r r e d ways t o t r e a t i l l n e s s and those of the p a t i e n t s and f a m i l i e s . I t i s necessary f o r both nurses and Chinese f a m i l i e s t o understand each other's viewpoint to e s t a b l i s h a c o o p e r a t i v e working r e l a t i o n s h i p . Nurses must a v o i d imposing t h e i r own values, such as the c o r r e c t n e s s of i n f o r m i n g the p a t i e n t of the d i a g n o s i s , on the f a m i l y . Instead, nurses should engage i n a c o l l a b o r a t i v e r e l a t i o n s h i p with f a m i l i e s where both p a r t i e s can c o n s t r u c t the p l a n of care a c c e t p a b l e t o both. A major problem t h a t r e q u i r e s c r e a t i v e p r o b l e m - s o l v i n g i s overcoming the language b a r r i e r s between h e a l t h care p r o f e s s i o n a l s , and p a t i e n t s and f a m i l y members. Nurses must advocate f o r t r a i n i n g b i l i n g u a l s e r v i c e employees and h i r i n g i n t e r p r e t e r s . Nurses can h e l p b r i d g e the communication gap by u s i n g cue cards w r i t t e n both i n E n g l i s h and the Chinese d i a l e c t of the p a t i e n t . Food d i f f e r e n c e s may be addressed by a r r a n g i n g f o r the f a m i l y and p a t i e n t to c o n s u l t with a h o s p i t a l n u t r i t i o n i s t and by d i s c u s s i n g a l t e r n a t e ways of accommodating the p a t i e n t s ' d i s l i k e s while at the same time not adding t o the f a m i l y members r e s p o n s i b i l i t i e s u n n e c e s s a r i l y . Ordering Chinese food i n from the p a t i e n t s ' f a v o r i t e Chinese r e s t a u r a n t may be an acceptable a l t e r n a t i v e i f cost i s not too burdensome. As the p a t i e n t s get c l o s e r to death, however, nurses can help f a m i l i e s understand t h a t p a t i e n t s may r e f u s e food by d e s c r i b i n g , i n a g e n t l e and r e s p e c t f u l manner, the n a t u r a l process t h a t occurs as death nears. T h i s may be very 150 d i f f i c u l t and be met with r e s i s t e n c e s i n c e food i s seen as a source of l i f e and, t h e r e f o r e , hope t o Chinese f a m i l i e s ; i n f o r m a t i o n must a l s o be o f f e r e d i n a s u b t l e and t a c t f u l manner. Only with the a d d i t i o n a l knowledge of background b e l i e f s and present f a m i l y s i t u a t i o n s can nurses promote support and counsel Chinese f a m i l i e s r e a l i s t i c a l l y i n the care of the t e r m i n a l l y i l l . P r e f e r e n c e i n L o c a t i o n of Care I t was found t h a t , while f a m i l i e s p r e f e r r e d care at home, t h a t p r e f e r e n c e was contingent on four f a c t o r s : a v a i l a b i l i t y and a b i l i t y of c a r e g i v e r , f a m i l y support, i n f o r m a t i o n from f a m i l y p h y s i c i a n , and the p a t i e n t ' s p h y s i c a l c o n d i t i o n and symptom c o n t r o l . Knowing these f a c t o r s p r o v i d e s d i r e c t i o n f o r nurses i n terms of areas f o r assessment and i n t e r v e n t i o n . With the r e s u l t s r e v e a l i n g the circumstances surrounding h o s p i t a l i z a t i o n , i t may be p o s s i b l e f o r nurses to o f f e r a d d i t i o n a l support s e r v i c e s and e x p e r t i s e to reduce the f e e l i n g of h e l p l e s s n e s s . Another i m p l i c a t i o n of the f i n d i n g s i s t h a t nurses need t o a p p r a i s e t h e i r own f e e l i n g s and b e l i e f s r e g a r d i n g Chinese f a m i l i e s ' d e s i r e t o have the p a t i e n t d i e i n h o s p i t a l . The f i n d i n g s i n d i c a t e d t h a t f a m i l i e s p e r c e i v e d care f o r the imminently dying p a t i e n t to be beyond t h e i r a b i l i t i e s and thus r e q u i r e d the e x p e r t i s e of h e a l t h care p r o f e s s i o n a l s . I t would be u s e f u l to a p p r a i s e the f a m i l y ' s knowledge of care they b e l i e v e i s needed p r i o r to death, where they p e r c e i v e the gaps to be i n the f a m i l i y members' a b i l i t i e s t o manage 151 such care, i d e n t i f y the f e a r s surrounding death at home ( i f they e x i s t ) , and address each i f p o s s i b l e . I t i s apparent t h a t the f i n d i n g s of t h i s study p r o v i d e a b a s i s upon which to understand n u r s i n g ' s p o t e n t i a l r o l e i n the care of f a m i l i e s e x p e r i e n c i n g cancer and c a r e g i v i n g . Obviously, more research-based knowledge i s r e q u i r e d b e f o r e a comprehensive understanding of the Chinese f a m i l i e s experience can be achieved. I m p l i c a t i o n s f o r n u r s i n g r e s e a r c h i s d i s c u s s e d i n the f o l l o w i n g s e c t i o n . I m p l i c a t i o n s For Nursing Research The f i n d i n g s underscored t h a t t h e r e i s a need f o r r e s e a r c h t h a t addresses f a m i l y groups r a t h e r than i n d i v i d u a l members. The data obtained from r e s e a r c h with f a m i l y groups d i f f e r from those obtained from i n d i v i d u a l members. Informants acknowledged u n c e r t a i n t i e s r e g a r d i n g other f a m i l y members' experiences as w e l l as the p a t i e n t ' s . C e r t a i n l y , s t u d i e s t h a t i n c l u d e data c o l l e c t i o n from both the f a m i l y u n i t as a whole and the i n d i v i d u a l members s e p a r a t e l y would p r o v i d e an i l l u m i n a t i n g source of i n f o r m a t i o n about the f a m i l y experience and management of c a r e . However, conducting r e s e a r c h with Chinese f a m i l i e s , i n c l u d i n g the p a t i e n t , about t e r m i n a l i l l n e s s may be l i m i t e d s i n c e p a t i e n t s were not always informed of t h e i r d i a g n o s i s and p r o g n o s i s . Moveover, d u r i n g sample recruitment, i t was found t h a t p a t i e n t s who were aware of t h e i r d i a g n o s i s v o l u n t e e r e d but f a m i l y members d e c l i n e d . F u r t h e r thought must be given t o r e c r u i t m e n t s t r a t e g i e s when i n v e s t i g a t i n g t o p i c s a s s o c i a t e d with t e r m i n a l i l l n e s s w i t h Chinese f a m i l i e s . 152 Informants p a r t i c i p a t i n g i n t h i s study i n d i c a t e d t h a t such involvement enabled them t o r e c i p r o c a t e or "pay back" h e a l t h care p r o f e s s i o n a l s . They i n d i c a t e d t h e i r commitment t o completing "surveys" or " q u e s t i o n n a i r e s " sent to them. The use of q u a n t i t a t i v e methods i n data c o l l e c t i o n may p r o v i d e added o p p o r t u n i t i e s to access v i t a l i n f o r m a t i o n about f a m i l i e s ' e x p e r i e n c e s . I t may a l s o serve to v a l i d a t e the i n f o r m a t i o n c o l l e c t e d v e r b a l l y s i n c e , at times, the author suspected informants were agreeing with her to be p o l i t e when, i n f a c t , they might have d i s a g r e e d with some p o i n t s made t o enable the r e s e a r c h e r t o "save f a c e . " A d d i t i o n a l s e n s i t i v i t y was needed on the p a r t of the r e s e a r c h e r when attempting t o v a l i d a t e the f i n d i n g s t o c o n f i r m the informants t r u e meaning. F u r t h e r i n v e s t i g a t i o n i s needed to determine the accuracy and g e n e r a l i z a b i l i t y of t h i s p e r c e p t i o n . Since the f i n d i n g s of t h i s study r e f l e c t i n f o r m a t i o n t h a t has not been r e p o r t e d i n the l i t e r a t u r e , i t seems a p p r o p r i a t e to suggest t h a t q u a l i t a t i v e methodologies are a p p r o p r i a t e to the g e n e r a l q u e s t i o n of how and what Chinese f a m i l i e s experience at t h i s p o i n t i n the e v o l u t i o n of knowledge. However, informants who d i d not have a good command of E n g l i s h had d i f f i c u l t y a r t i c u l a t i n g the depth of a n a l y s i s a n t i c i p a t e d and were not accustomed to examining t h e i r experiences i n the manner being asked of i n the open i n t e r v i e w s . The use of an i n t e r p r e t e r may have helped to reduce any misunderstandings but the use of an i n t e r p r e t e r c o u l d add another dimension to the type of data c o l l e c t e d . 153 Since t h i s study's f i n d i n g s are based on the accounts o f a sma l l sample of mainly a d u l t c h i l d r e n , f l u e n t i n E n g l i s h , s i m i l a r s t u d i e s w i t h n o n - E n g l i s h speaking Chinese f a m i l y members and the i n c l u s i o n o f o l d e r Chinese i n d i v i d u a l s would shed l i g h t on the degree t o which the f i n d i n g s of t h i s study r e f l e c t the experiences o f a l a r g e r p o r t i o n o f the Chinese p o p u l a t i o n . In a d d i t i o n , conducting the same study with other e t h n i c groups, i n c l u d i n g Caucasian f a m i l i e s , would determine i f they a l s o use the b a l a n c i n g process i n managing care. F u r t h e r s t u d i e s would add t o i t s v a l i d i t y as a guide f o r n u r s i n g p r a c t i c e . Since the f i n d i n g s o f the study d i d not r e v e a l when f a m i l y management was f u n c t i o n a l or d y s f u n c t i o n a l and i f c e r t a i n combinations of management s t r a t e g i e s enabled the f a m i l y t o manage the demands more e f f e c t i v e l y or l e s s e f f e c t i v e l y , f u r t h e r s t u d i e s are i n d i c a t e d . The f i n d i n g t h a t f a m i l i e s p r e f e r r e d the p a t i e n t t o d i e i n h o s p i t a l and the i n a b i l i t y o f the r e s e a r c h e r t o expl o r e t h i s f i n d i n g f u r t h e r owing t o emotional s t r a i n suggests the need f o r f u r t h e r r e s e a r c h i n t o the s u b j e c t of death at home. Perhaps r e t r o s p e c t i v e s t u d i e s conducted with f a m i l i e s s h o r t l y a f t e r death may p r o v i d e the data which would serve as the base f o r f u t u r e p r o s p e c t i v e i n v e s t i g a t i o n s . In summary, the f o l l o w i n g q u e s t i o n s have been r a i s e d as a r e s u l t o f t h i s i n v e s t i g a t i o n t h a t with f u r t h e r study would c o n t r i b u t e t o knowledge of the Chinese f a m i l y ' s experience w i t h cancer and care management. 1. What f a c t o r s i n f l u e n c e the support-seeking behaviours of the Chinese f a m i l y managing care of a member with cancer? 154 2. What d i f f e r e n c e e x i s t s i n how the b a l a n c i n g process i s performed among d i f f e r e n t e t h n i c groups? 3. How do Chinese f a m i l i e s p e r c e i v e the r o l e of nurses i n meeting t h e i r needs? 4. How does the b a l a n c i n g process d i f f e r i n both f u n c t i o n a l and d y s f u n c t i o n a l Chinese f a m i l i e s ? 5. What are the i n t e r r e l a t i o n s h i p s among the fo u r management s t r a t e g i e s o f the b a l a n c i n g process? 6. What i n f l u e n c e does degree of e t h n i c i d e n t i t y or a c c u l t u r a t i o n o f the Chinese f a m i l y u n i t have on i t s management of care i n the home and h o s p i t a l ? LIMITATIONS AND STRENGTHS The depth and r i c h n e s s of the data f o r t h i s study were l i m i t e d by the time and f i n a n c i a l c o n s t r a i n t s of the r e s e a r c h e r . Had funding been a v a i l a b l e f o r i n t e r p r e t e r s e r v i c e s , more in-dep t h data c o u l d have been c o l l e c t e d . Such c o n s t r a i n t s p a r t i a l l y account f o r the l i m i t e d number of informants i n t e r v i e w e d and the l i m i t e d number of i n t e r v i e w s e s s i o n s with each. The smal l sample p r e c l u d e s any g e n e r a l i z a b l e r e s u l t s . F u r t h e r , s i n c e informants were mainly a d u l t c h i l d r e n who spoke E n g l i s h , they may i n f a c t r e p r e s e n t a s p e c i a l i z e d subgroup of the t h e o r e t i c a l p o p u l a t i o n of Chinese f a m i l i e s . Furthermore, s i n c e the data were based on s e l f - r e p o r t i n g , informants s a i d only what, they wished t o share. Because of the d i f f i c u l t i e s with informant recruitment, c h o i c e s f o r a r t i c u l a t e informants were l i m i t e d . I n d i v i d u a l s 155 who i n d i c a t e d an i n t e r e s t were r e c r u i t e d . t h u s l i m i t i n g the r e s e a r c h e r ' s o p p o r t u n i t i e s to s e l e c t a l l informants who c o u l d p r o v i d e i n - d e p t h d e s c r i p t i o n s . F i f t e e n p o t e n t i a l informants were l o c a t e d , but only seven v o l u n t e e r e d . Those who r e f u s e d d i d so because they p e r c e i v e d themselves as "emotional" and "rushed." In f a c t , i t may be these i n d i v i d u a l s who e s p e c i a l l y r e q u i r e n u r s i n g ' s support. The s m a l l sample s i z e and the f a c t t h a t only the informant's not the f a m i l y u n i t ' s EIQ scores were not c o l l e c t e d p r e c l u d e d the drawing of f i r m c o n c l u s i o n s about the r e l a t i v e impact of degree of e t h n i c i d e n t i t y on the b a l a n c i n g p r o c e s s . Since some of the informants found the language of c e r t a i n items on the EIQ c o n f u s i n g , t h e i r answers may not r e f l e c t t h e i r t r u e o p i n i o n . For example, item 14, which asked f o r a p r e f e r e n c e i n " a t t e n d i n g a church or s p i r t u a l ceremony f o r t h e i r own people," was found to be c o n f u s i n g by t h r e e informants. I t may be t h a t the language, while thought t o be g e n e r i c by Burke and c o l l e a g u e s (1987), i s , i n f a c t , not a p p l i c a b l e t o Chinese i n d i v i d u a l s . Other items t h a t c r e a t e d s i m i l a r c o n f u s i o n were items 1, 4, 9, 12, and 13. Most of these items were ask i n g the informants t o r a t e t h e i r p e r c e p t i o n r e g a r d i n g t r a d i t i o n s or customs. One informant f e l t " n e u t r a l " about items 12, 13, and 14 and would have p r e f e r r e d a f i f t h column t o r e f l e c t her t r u e o p i n i o n . While t h e r e was merit i n examining the Chinese informants and f a m i l y u n i t ' s degree of e t h n i c i d e n t i t y or a c c u l t u r a t i o n , i t may be t h a t t h i s q u e s t i o n n a i r e i s not s u i t a b l y c o n s t r u c t e d f o r t h i s p o p u l a t i o n . 156 The main l i m i t a t i o n of the study i s t h a t the r e s u l t s are based on one f a m i l y member's p e r c e p t i o n o f t h e i r f a m i l y ' s management p r o c e s s . I t may be t h a t the b a l a n c i n g process r e f l e c t s mainly the a c t i o n s of Chinese a d u l t c h i l d r e n r a t h e r than the t o t a l f a m i l y . In a d d i t i o n , c u l t u r a l i n f l u e n c e s may have been more evident had o l d e r f a m i l y members and members who adhered t o the t r a d i t i o n a l customs been i n c l u d e d i n the study. L a s t l y , because the r e s e a r c h e r was Caucasian, i n t e r p r e t a t i o n o f the data may have been i n f l u e n c e d by her Western v a l u e s or l a c k of understanding of s u b t l e i d i o c y r a c i e s o f the Chinese c u l t u r e t h a t went un n o t i c e d d u r i n g a n a l y s i s . A s t r e n g t h of the study was t h a t i t began t o address the dear t h of r e s e a r c h p e r t a i n i n g t o the Chinese f a m i l i e s ' experience i n managing c a r e g i v i n g of the t e r m i n a l l y i l l . S e v e r a l experts suggested t o the r e s e a r c h e r t h a t such r e s e a r c h " c o u l d not be done." Although study l i m i t a t i o n s must be taken i n t o c o n s i d e r a t i o n , the f i n d i n g s o f t h i s study are the f i r s t step i n understanding (from t h e i r p e r s p e c t i v e ) Chinese f a m i l i e s ' experiences with cancer. The r e s u l t s a l s o enhance the understanding o f the s i m i l a r i t i e s among f a m i l i e s ' e x p e r i e n c e s . Such experiences are not c u l t u r a l l y bound. I t v a l i d a t e s the r e s e a r c h e r ' s p e r c e p t i o n t h a t f a m i l i e s p e r c e i v e t h e i r experiences and themselves t o be unique i n r e l a t i o n t o other f a m i l i e s o f the same e t h n i c group. T h i s i s e s s e n t i a l f o r nurses t o understand and t o i n t e g r a t e i n t o t h e i r p r a c t i c e . As w e l l , the f i n d i n g s d i s p e l many of the 157 g e n e r a l i z a t i o n s and s t e r o t y p e s commonly made about Chinese f a m i l i e s e x p e r i e n c i n g a t e r m i n a l i l l n e s s . The most rewarding aspect o f the study f o r the r e s e a r c h e r was the i n t e r e s t and r e l i e f they r e v e a l e d when t a l k i n g about t h e i r e xperience. 158 Chapter S i x SUMMARY AND CONCLUSIONS Th i s study was designed t o expl o r e how Chinese f a m i l i e s managed care o f a a d u l t f a m i l y member with advanced cancer i n the home and h o s p i t a l , t o examine f a c t o r s which a f f e c t e d care management, examine the i n f l u e n c e of c u l t u r a l b e l i e f s on c a r e g i v i n g , and examine p r e f e r e n c e of l o c a t i o n of care. Because l i t t l e was known, from the author's p e r s p e c t i v e , about the most e f f e c t i v e method of conducting r e s e a r c h with the Chinese f a m i l y u n i t , i t was deci d e d t o r e c r u i t one f a m i l y member as the informant f o r the f a m i l y u n i t . The Chinese e t h n i c group was s e l e c t e d s i n c e many n u r s i n g experts p e r c e i v e d t h a t Chinese f a m i l i e s experienced t e r m i n a l i l l n e s s and care management d i f f e r e n t l y than Caucasian f a m i l i e s . The experts questioned the ap p r o p r i a t e n e s s of western h e a l t h care p r a c t i c e s i n a s s i s t i n g Chinese f a m i l i e s t o manage cancer-r e l a t e d care and death. With the i n c r e a s i n g number of Chinese immigrants l i v i n g i n western Canada, i t was c r i t i c a l f o r nurses t o g a i n a b e t t e r understanding o f t h e i r needs t o p l a n a p p r o p r i a t e n u r s i n g c a r e . The l i t e r a t u r e was reviewed i n order t o p l a c e the . study w i t h i n the context o f c u r r e n t knowledge. Since t h i s body of knowledge was found t o be extremely l i m i t e d , a review of common t h e o r e t i c a l p e r s p e c t i v e s a s s o c i a t e d w i t h the areas of i n t e r e s t was a l s o completed. The review of the l i t e r a t u r e encompassed t h r e e areas: f a m i l y , care and it's l o c a t i o n , and c u l t u r a l i n f l u e n c e s . 159 The q u a l i t a t i v e method used i n t h i s study was the grounded theory approach. A q u a l i t a t i v e method was seen as a p p r o p r i a t e s i n c e t h i s study aimed to d e s c r i b e and to e x p l a i n a s u b j e c t i v e experience where l i t t l e p r e e x i s t i n g knowledge e x i s t s . The i n t e r v i e w q u e s t i o n g u i d e l i n e was p r e t e s t e d w i t h t h r e e Chinese i n d i v i d u a l s t o a p p r a i s e the s u i t a b i l i t y of the i n t e r v i e w g u i d e l i n e questions f o r use wi t h the Chinese e t h n i c group. The E t h n i c I d e n t i t y Q u e s t i o n n a i r e , consent, and l e t t e r of e x p l a n a t i o n were a l s o reviewed f o r c l a r i t y and c u l t u r a l s e n s i t i v i t y . The i n t e r v i e w q u e s t i o n guide was m o d i f i e d t o r e f l e c t the feedback. Informants were r e c r u i t e d through two medical u n i t s i n gen e r a l acute care h o s p i t a l and the Home Care program of a l o c a l h e a l t h u n i t i n a m e t r o p o l i t a n area i n western Canada. Data were c o l l e c t e d through i n t e r v i e w s w i t h s i x Chinese informants who were e i t h e r a d u l t c h i l d r e n or the spouse of p a t i e n t s with advanced cancer. F i v e of the informants were a d u l t c h i l d r e n and one was a spouse. Interviews were audio-taped and t r a n s c r i b e d verbatim by the r e s e a r c h e r . E x t e n s i v e f i e l d notes were a l s o documented. Q u a n t i t a t i v e data were c o l l e c t e d u s i n g the E t h n i c I d e n t i t y Q u e s t i o n n a i r e . Data c o l l e c t i o n and a n a l y s i s o c c u r r e d simultaneously through the process of constant comparative a n a l y s i s . Content a n a l y s i s was c a r r i e d out to i d e n t i f y f a c t o r s t h a t i n f l u e n c e d how Chinese f a m i l i e s managed the care of the p a t i e n t s , t o i d e n t i f y p r e f e r e n c e f o r l o c a t i o n of care, and to examine the i n f l u e n c e of c u l t u r a l b e l i e f s . 160 The content a n a l y s i s o f the data r e v e a l e d t h a t f i v e o f the s i x informants p e r c e i v e d t h a t t h e i r f a m i l i e s p r e f e r r e d care at home to care i n the h o s p i t a l . Home was p r e f e r r e d because i t enabled them to honor the p a t i e n t s ' wishes, i n c r e a s e the p a t i e n t s ' happiness, i n c r e a s e normalcy, p r o v i d e i n c r e a s e d freedom, and reduce worry. However, care at home was contingent on fo u r f a c t o r s : a v a i l a b i l i t y and a b i l i t y of c a r e g i v e r s , f a m i l y support, i n f o r m a t i o n from p h y s i c i a n , and the p a t i e n t s ' p h y s i c a l c o n d i t i o n and symptom c o n t r o l . H o s p i t a l i z a t i o n was seen as the only c h o i c e once the f a m i l i e s "reached t h e i r l i m i t " and p e r c e i v e d l o s s of c o n t r o l and h e l p l e s s n e s s . A l l informants i d e n t i f i e d the h o s p i t a l as the p l a c e where the p a t i e n t would die.. F a c t o r s i d e n t i f i e d as i n f l u e n c i n g the management of care i n c l u d e d past experiences with l o s s and death and past r e l a t i o n s h i p s with the p a t i e n t and w i t h i n the f a m i l y . S t y l e of i n d i v i d u a l s and the f a m i l y u n i t a l s o i n f l u e n c e d how Chinese f a m i l i e s managed ca r e . B e l i e f s and p r a c t i c e s thought t o be c u l t u r a l l y based were a l s o found t o i n f l u e n c e the a c t i o n s o f f a m i l y members and reasons given f o r t h e i r a c t i o n s . E t h n i c i d e n t i t y was r e l a t e d t o some of the informants' a c t i o n s a s s o c i a t e d w i t h adherence t o Chinese t r a d i t i o n s . The e t h n i c i d e n t i t y o f other f a m i l y members was not assessed, thereby l i m i t i n g the c o n c l u s i o n s about the i n f l u e n c e o f e t h n i c i d e n t i t y on the management pr o c e s s . Conceptual a n a l y s i s r e v e a l e d the b a l a n c i n g process which c h a r a c t e r i z e d how Chinese f a m i l i e s managed the care of an a d u l t member with advanced cancer. B a l a n c i n g emerged as the 161 core s o c i a l process from t h i s i n v e s t i g a t i o n . I t d e p i c t e d the s t r u g g l e and j u g g l i n g r e q u i r e d by f a m i l y members i n managing the demands t h a t f a c e d them: c a r e g i v i n g demands and everyday f a m i l y demands. The b a l a n c i n g process began when the f a m i l y members were informed by the p h y s i c i a n of the d i a g n o s i s of cancer, of t h e s e r i o u s n e s s of the s i t u a t i o n and the i n e v i t a b l e nature of the i l l n e s s . I t comprised of f o u r i n t e r r e l a t e d management s t r a t e g i e s : gauging, a n t i c i p a t i n g , s h a r i n g the load, and r e s o u r c i n g . Each s t r a t e g y was e q u a l l y important f o r b a l a n c i n g the demands at hand. The four s t r a t e g i e s were d i f f i c u l t t o s i n g l e out because of t h e i r i n t e r r e l a t e d n e s s , however, t h e r e were common a c t i v i t i e s which c h a r a c t e r i z e d each. B a l a n c i n g o c c u r r e d whether the p a t i e n t was i n h o s p i t a l or at home. Ba l a n c i n g was not c u l t u r a l l y s p e c i f i c . The s t r u g g l e and u n c e r t a i n t y experienced by the Chinese f a m i l i e s was s i m i l a r t o t h a t experience of Caucasian f a m i l i e s i n other r e s e a r c h e r s ' s t u d i e s (Corbin &.Strauss, 1988; Davies, et a l , i n p r e s s ) . While b e l i e f s and p r a c t i c e s i n f l u e n c e d some a c t i v i t i e s w i t h i n b a l a n c i n g and i n f l u e n c e d reasons f o r f a m i l y members' a c t i o n s , the b e l i e f s d i d not i n f l u e n c e the o v e r a l l p rocess or s t r a t e g i e s used. Each f a m i l y engaged i n a l l of the s t r a t e g i e s . V a r i a t i o n s e x i s t e d among the informants' f a m i l i e s i n the onset and l e n g t h of use of each s t r a t e g y and i n some of the a c t i v i t i e s used, although more s i m i l a r i t i e s e x i s t e d than d i f f e r e n c e s . Some a c t i v i t i e s of r e s o u r c i n g were c o n s i d e r e d c u l t u r a l l y based. They i n c l u d e d t r y i n g out and 162 p a t t e r n s o f h e l p - s e e k i n g . T r y i n g out c o n s i s t e d o f t r y i n g a l t e r n a t i v e s i n the hope of f i n d i n g a cure and s t r e n g t h e n i n g t h e p h y s i c a l w e l l b e i n g o f the p a t i e n t . T r y i n g out o f f e r e d p a t i e n t s and f a m i l y members hope and a sense of s e c u r i t y or c o n t r o l over the s i t u a t i o n . Taking a c t i o n meant t h a t the f a m i l y members were doing something t o improve the p a t i e n t s ' c o n d i t i o n when western p h y s i c i a n s had nothin g t o o f f e r . The p a t t e r n s o f behaviour a s s o c i a t e d w i t h h e l p - s e e k i n g c o n s i s t e d of seeking a s s i s t a n c e from t h r e e sources: f a m i l y (immediate and extended), s o c i a l networks ( f r i e n d s and c o n n e c t i o n s ) , n o n - p r o f e s s i o n a l f o l k h e a l e r s , and h e a l t h care p r o f e s s i o n a l s . A second c o n c l u s i o n o f t h i s study i s t h a t Chinese f a m i l i e s d i f f e r among themselves i n terms of t h e i r needs and s t y l e s . Each possessed i t s own p e r c e p t i o n s and ways of i n t e r p r e t i n g t h e i r b e l i e f s and each p e r c e i v e d i t s experience t o be unique t o i t s e l f . In sh o r t , d i v e r s i t y e x i s t e d among the f a m i l i e s even though they are of the same e t h n i c group. A t h i r d c o n c l u s i o n drawn from the f i n d i n g s of t h i s study i s t h a t Chinese f a m i l i e s need options f o r l o c a t i o n o f ca r e . A c l o s e r l i n k between h o s p i t a l and community agencies would f a c i l i t a t e c a r e g i v i n g and f a m i l y coping, e s p e c i a l l y as p a t i e n t s ' m o b i l i t y d i m i n i s h e s and symptoms can not be c o n t r o l l e d . An important c o n c l u s i o n i s t h a t cancer i s a s t r e s s f u l and p o t e n t i a l l y d i s r u p t i v e d i a g n o s i s f o r the Chinese f a m i l y . The meaning of the d i a g n o s i s t o them i s c o n s i s t e n t with t h a t h e l d by the p o p u l a t i o n at l a r g e . I t i s a dreaded and deadly d i s e a s e . 163 An a d d i t i o n a l c o n c l u s i o n from t h i s study i s t h a t Chinese f a m i l i e s managing cancer r e l a t e d care and demands of everyday l i f e r e q u i r e accurate i n f o r m a t i o n from h e a l t h care p r o f e s s i o n a l s , a s i d e from p h y s i c i a n s , and need support i n order t o cope e f f e c t i v e l y . O f f e r i n g a s s i s t a n c e t o Chinese f a m i l i e s i s not a simple f e a t s i n c e the f a m i l i e s d i d not seek a s s i s t a n c e from other h e a l t h care p r o f e s s i o n a l s , except f o r p h y s i c i a n s , u n l e s s the p h y s i c i a n r e f e r r e d them. Because they r e l i e d on immediate and extended f a m i l y members, s o c i a l network, and f o l k h e a l e r s f o r support, advice, a s s i s t a n c e , and treatment, e a r l y c o n t a c t i s d i f f i c u l t t o assure. A f i n a l c o n c l u s i o n of t h i s study i s t h a t f o r these f a m i l i e s cancer i s d e f i n i t e l y experienced w i t h i n a f a m i l y context and managed w i t h i n the context of everyday l i v i n g . I f the cancer experience i s t o be understood at a l l , i t must be examined as a f a m i l y experience r a t h e r than the experience of an i n d i v i d u a l p a t i e n t . 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BY YEAR 4500 4 0 0 0 3 5 0 0 3 0 0 0 2 5 0 0 2 0 0 0 1500 1000 5 0 0 Legend © From China • From Hong Kong O From Tai %Wan Year Appendix B 17^ MAJOR ETHNIC GROUP POPULATION IN BC 250000-1 200000H 150000H 100000H 50000 T O T A L : Legend •1 1972-1987 m 1971 95844 .58519 205225 56255 16563 74559 33048 23558 ^P y>v' Ethnic Group 175 Appendix C CHINESE FAMILIES' MANAGEMENT OF SUPPORTIVE CARE G u i d e l i n e s f o r Interviews: I n d i v i d u a l ' s P e r c e p t i o n o f Family We b e l i e v e t h a t when a person i s s i c k , l i k e Mr./Mrs. X, t h a t t h e r e i s an e f f e c t on the whole f a m i l y . The g r e a t e s t e f f e c t i s probably on the person who i s i l l , but because we are a l l p a r t of f a m i l i e s , the r e s t of the f a m i l y i s a l s o a f f e c t e d . We are i n t e r e s t e d i n l e a r n i n g more about how f a m i l i e s manage these kinds o f s i t u a t i o n s - as a way of p l a n n i n g f o r b e t t e r care.. Some people we are se e i n g are at home and some are i n h o s p i t a l , and we w i l l be ask i n g q u e s t i o n s about what i t i s l i k e t o be e i t h e r at home or i n h o s p i t a l . I. I would l i k e t o begin by as k i n g you some quest i o n s t h a t have t o do w i t h how your f a m i l y i s managing t h i s s i t u a t i o n . 1. For the past while, Mr./Mrs. X has been at home ( i n the h o s p i t a l ) . What has i t been l i k e f o r your f a m i l y t o have him/her at home (i n the h o s p i t a l ) ? What kinds of t h i n g s s t i c k out i n your mind about the experience? 2. When someone i n the f a m i l y i s i l l , t h e r e are o f t e n many t h i n g s t h a t must change. What have you had t o change, or do d i f f e r e n t l y as a r e s u l t o f Mr./Mrs. X's i l l n e s s ? Probes: a. What has changed i n your jobs, t a s k s ? b. How have your f a m i l y ' s f e e l i n g s changed about the fa m i l y ? c. Every f a m i l y has i t s own way of communicating - has th e r e been a change i n how your f a m i l y communicates? 3. When someone i n a f a m i l y i s i l l , we expect t h a t t h e i r h e a l t h r e q u i r e s much a t t e n t i o n . Sometimes, the h e a l t h of other f a m i l y members i s a l s o a f f e c t e d . How has the h e a l t h of your f a m i l y members been? Probes: a. Sometimes th e r e i s a rec u r r e n c e o f p r e - e x i s t i n g h e a l t h problems. Has t h i s been the case f o r anyone i n your f a m i l y ? b. Sometimes f a m i l y members have problems w i t h every day concerns, such as s l e e p i n g , or e a t i n g , or g e t t i n g e x e r c i s e . Have any f a m i l y members had problems i n these areas? 176 c. Sometimes f a m i l y members f i n d t h a t t h e y have d i f f i c u l t i e s c a r r y i n g on w i t h t h e i r own s o c i a l commitments and o b l i g a t i o n s . Has t h i s been t h e case f o r anyone i n your f a m i l y ? 4. What, i f any, o t h e r s t r e s s f u l e v e n t s have happened i n your f a m i l y d u r i n g t h i s t i m e ? How have you managed t h e s e ? How ar e you managing t h e s e ? 5. How does t h i s s i t u a t i o n compare w i t h o t h e r s t r e s s f u l s i t u a t i o n s t h a t you have e x p e r i e n c e d i n your f a m i l y i n t h e p a s t ? How d i d you h a n d l e t h o s e s i t u a t i o n s ? I I . I would l i k e t o s w i t c h t h e f o c u s now t o q u e s t i o n s about Mr./Mrs. X's c a r e . 6. What has been t h e most d i f f i c u l t p a r t o f c a r i n g f o r Mr./ Mrs. X a t home ( i n t h e h o s p i t a l ) ? P r o b e s : a. Who h e l p s c a r e f o r Mr./Mrs. X? b. Who comes t o v i s i t ? Do t h e y v i s i t more a t home or i n h o s p i t a l ? c. What do t h e y do t h a t i s h e l p f u l ? U n h e l p f u l ? d. I n a d d i t i o n t o f r i e n d s and o t h e r p e o p l e i n t h e community, t h e r e have been o t h e r p e o p l e i n v o l v e d i n Mr./ Mrs. X's c a r e , such as d o c t o r s , n u r s e s , o t h e r h e a l t h c a r e w o r k e r s . Who o r what has been h e l p f u l t o you? U n h e l p f u l ? What e l s e might have h e l p e d ? e. How have t h e s e r v i c e s i n v o l v e d i n t h e c a r e been h e l p f u l ? Can you t h i n k o f ways t h e y c o u l d be more h e l p f u l o r how t h e s e r v i c e s c o u l d be improved? 8. Sometimes d i f f i c u l t t i m e s a l s o b r i n g out some good t h i n g s f o r f a m i l i e s . Has your f a m i l y e x p e r i e n c e d t h i s ? Can you d e s c r i b e some o f t h e good t h i n g s ? 9. How d i d you come t o d e c i d e t h a t Mr./Mrs. X would s t a y a t home (or come t o t h e h o s p i t a l ) ? Who was i n v o l v e d i n making t h a t d e c i s i o n ? I I I . The n e x t q u e s t i o n s have t o do w i t h t h e l o c a t i o n o f c a r e : a t home o r i n t h e h o s p i t a l . 10. When you t h i n k about Mr./ Mrs. X b e i n g a t home o r i n t h e h o s p i t a l , what do you see as t h e "good" and "bad" o f each? C o u l d you compare them p l e a s e . What a r e t h e advantages and t h e d i s a d v a n t a g e s o f each? 11. Can you e v e r see Mr./ Mrs. X g o i n g t o t h e h o s p i t a l (going back home)? I f so, what would make your f a m i l y want t o do t h a t , o r c o n s i d e r t h a t ? I f n o t , why not? 12. Based on your f a m i l y ' s experience, what suggestions would you have f o r other Chinese f a m i l i e s who are going through a s i m i l a r experience? IV. The next q u e s t i o n s have t o do with the Chinese c u l t u r e and the i n f l u e n c e of the Chinese b e l i e f s on c a r i n g f o r Mr./Mrs. X. 13. In order t o g i v e optimal a s s i s t a n c e t o Chinese f a m i l i e s w i t h t h e i r s i c k r e l a t i v e , we need t o understand t h e i r p o i n t o f view. The ques t i o n s I have asked you are being asked o f o t h e r s . I wonder i f you f i n d these questions o f f e n s i v e / i f they make sense t o you? 14. We would l i k e t o be able t o study the whole Chinese f a m i l y . What would you suggest i s the best way to do t h i s ? Probes: a. In the Chinese c u l t u r e , who i s u s u a l l y the spokesperson f o r the fa m i l y ? b. In the Chinese c u l t u r e , i s i t customary t o d i s c u s s f e e l i n g s and wo r r i e s together? 15. I would l i k e t o have a b e t t e r understanding of how Chinese b e l i e f s i n f l u e n c e the f a m i l y c a r e g i v i n g . Probes: a. Are t h e r e d i f f e r e n c e s i n your b e l i e f s and those o f your spouse (adult c h i l d r e n / e x t e n d e d f a m i l y ) ? How do they d i f f e r ? b. How have the customs i n your f a m i l y i n f l u e n c e d you while c a r i n g f o r Mr./Mrs.X? V. The l a s t q u e s t i o n has to do with your p a r t i c i p a t i o n i n t h i s study. 16. Some f a m i l i e s f i n d t h a t p a r t i c i p a t i n g i n a study l i k e t h i s i s d i f f i c u l t ; o thers l i k e having an o p p o r t u n i t y t o t a l k . How has i t been f o r you to p a r t i c i p a t e i n t h i s i n t e r v i e w ? October, 198 9 178 Appendix D CHINESE FAMILIES' MANAGEMENT OF SUPPORTIVE CARE Revised G u i d e l i n e s f o r Interviews: I n d i v i d u a l ' s P e r c e p t i o n s of Family We b e l i e v e t h a t when a person i s s i c k , l i k e , t h a t t h e r e i s an e f f e c t on the whole f a m i l y . The g r e a t e s t e f f e c t i s probably on the person who i s i l l , but because we are a l l p a r t a f a m i l y u n i t , the r e s t of the f a m i l y i s a l s o a f f e c t e d . We are i n t e r e s t e d i n l e a r n i n g more about how f a m i l i e s manage these kinds o f s i t u a t i o n s - as a way of p l a n n i n g f o r b e t t e r c a r e . Some people we are seein g are at home and some are i n h o s p i t a l , and we w i l l be ask i n g q u e s t i o n s about what i t i s l i k e t o be e i t h e r at home or i n h o s p i t a l . 1. I would l i k e t o begin by as k i n g you to d e s c r i b e how t h i n g s have been f o r your f a m i l y s i n c e became i l l . Probes: a. What p a r t i c u l a r events s t i c k out i n your mind when i s cared f o r at home/cared f o r i n h o s p i t a l ? b. How has c a r i n g f o r at home/in h o s p i t a l a f f e c t e d your f a m i l y . 2. When someone i n the f a m i l y i s i l l , t h e r e are o f t e n many t h i n g s t h a t must change. What changes have you experienced or t h a t you do d i f f e r e n t l y s i n c e became i l l ? Probes: a. What has changed i n your d u t i e s / t a s k s w i t h i n the home? b. What has changed i n your d u t i e s / j o b o u t s i d e the home? c. What changes i n p a t t e r n s , h a b i t s or r o u t i n e s have you n o t i c e s (eg. cooking, e a t i n g , s l e e p i n g , e x e r c i s e or s o c i a l i z i n g , communication w i t h i n the f a m i l y ) ? 3. What, i f any, other worrisome s i t u a t i o n s or s t r e s s f u l events have happened i n your f a m i l y d u r i n g t h i s time? How are you managing these? Probes: a. For example, has anyone e l s e i n the f a m i l y been i l l or experienced some major change (e.g., i n job, residence) d u r i n g t h i s time? 179 I would l i k e t o switch focus now t o que s t i o n s about c a r e . 4. Who has been i n v o l v e d i n care? Probes: a. Who helps care f o r from w i t h i n the f a m i l y / w i t h i n the community? What i s t h e i r r o l e ? ( f r i e n d s , people i n the community, f o l k h e a l e r s , p s y c h i c s , a n c estors worshippers, s p i r i t w o rshippers). b. What h e a l t h care p r o f e s s i o n a l s are i n v o l v e d i n care (e.g., d o c t o r s , nurses, other h e a l t h care p r o f e s s i o n a l s ) ? What care have they a s s i s t e d your f a m i l y with? c. How have the s e r v i c e s i n v o l v e d i n the care been h e l p f u l ? Can you t h i n k of what would have been more h e l p f u l ? How c o u l d the s e r v i c e be improved? What c o u l d they have done d i f f e r e n t l y ? d. Who or what e l s e have been h e l p f u l t o your f a m i l y ? e. Who comes to v i s i t ? Do they v i s i t more at hoe or i n the h o s p i t a l ? f . Is t h e r e any reason t h a t someone may not be able t o v i s i t i n the h o s p i t a l ? g. Who would you p r e f e r p r o v i d e care t o ? h. How important i s i t t o your f a m i l y t h a t the person i n v o l v e d i n the care of be Chinese or t h a t they understand Chinese t r a d i t i o n s ? i . What k i n d of h e l p have you sought t o a s s i s t you to manage care? 5. What has been the most d i f f i c u l t p a r t of c a r i n g f o r at home/in h o s p i t a l ? The next q u e s t i o n s have to do wi t h where i s care f o r : at home or i n the h o s p i t a l . 6 . How d i d your f a m i l y come t o decide t h a t would s t a y at home/come to the h o s p i t a l ? Who was i n v o l v e d i n making t h a t d e c i s i o n ? 7. Can you see going back home/going t o the h o s p i t a l ? What would i n f l u e n c e your d e c i s i o n ? Under what circumstances would you see - r e t u r n i n g home/ bei n g admitted t o h o s p i t a l ? 8. When you t h i n k about b e i n g at home/or i n h o s p i t a l , what concerns you most and l e a s t ? Is t h e r e a p r e f e r e n c e i n where i s cared f o r ? What makes one l o c a t i o n b e t t e r than another? 180 The next q u e s t i o n s have t o do with the Chinese t r a d i t i o n s and the i n f l u e n c e they have on c a r i n g f o r . 9. How have the t r a d i t i o n s o f your f a m i l y ' s background i n f l u e n c e d you or yor f a m i l y while c a r i n g f o r Probes: a. What i s important t o Chinese f a m i l i e s at a time l i k e t h i s when someone i s very i l l / s i c k ? b. What are the d i f f e r e n c e s i n your b e l i e f s and those of your p a r e n t s / s p o u s e / c h i l d . c. Are t h e r e p a r t i c u l a r b e l i e f s t h a t i n f l u e n c e your d e c i s i o n s t o take [ t o h o s p i t a l or keep home? I f so, would you d e s c r i b e them f o r me. 10. In the Chinese c u l t u r e , who i s u s u a l l y the spokesperson f o r the fa m i l y ? 11. Is i t customary t o d i s c u s s f e e l i n g s and wo r r i e s t o g e t h e r i n Chinese f a m i l i e s ? The l a s t q u e s t i o n s have t o do wit h your p a r t i c i p a t i o n i n t h i s r e s e a r c h study. 12. Some people f i n d t h a t p a r t i c i p a t i n g i n a study l i k e t h i s i s d i f f i c u l t ; others l i k e having an o p p o r t u n i t y t o t a l k . How has i t been f o r you to p a r t i c i p a t e i n t h i s i n t e r v i e w ? 13. Are t h e r e q u e s t i o n s t h a t c o u l d be omitted or changed? 14. We would l i k e t o i n t e r v i e w Chinese f a m i l y members to g e t h e r . What would you suggest i s the best way to do t h i s ? R evised January, 1990 181 Appendix E I.D.* Row E t h n i c I d e n t i t y Q u e s t i o n n a i r e Listed below are some statements about being of your ancestry. Read each statement and circle the letter to the right which best shows how you feel. Please do as quickly as possible. Circle A if you strongly agree Circle a if you slightly agree Circle d if you slightly disagree Circle 0 if you strongly disagree There are no right or wrong answers. Agree Disagree 1. Prejudice is every person's problem even if one does not happen to suffer from i t . A a d o r I6 2. Learning about your heritage is not important if you plan to spend your l i fe away from your people. A a d D | I7 3. People with the same ethnic background, should help their people who are in need. A a d D | I8 4. Traditional customs and observations mean a great deal to me. A a d D | 5. I would vote for someone because he/she was of the same ethnicity. A a d D | 110 6. I feel more comfortable with people of the same cultural background. A a d D | I11 7. It is better for people of my culture to marry someone of the same culture. A a d D { I12 8. I think of myself as being more Canadian than of any other culture. A a d D | |13 9. Being of my ancestry carries with it many A a d D | |14 responsibilities. 10. There is no reason for me to learn any language other than English. A a d D | I15 11. I prefer being treated by health care"* workers with the same cultural background. A a d D | I16 12. I like to live in a community of my own A a d ; D | I17 people. 13. I prefer that my friends be mostly of other A a d : 0 1 I18 cultural groups. 14. I prefer attending a church or spiritual A ' a d D 1 |19 ceremony that is for my people. 15. I do not have a strong feeling of attachment A d D | 120 to my origins or heritage. 182 Appendix F T H E U N I V E R S I T Y O F B R I T I S H C O L U M B I A The School of Nursing T . 206-2211 W e s b r o o k M a l l V a n c o u v e r , B . C . Canada V6T 2B5 CONSENT TO STUDY PROJECT TITLE: Chinese F a m i l i e s and Supportive Care CO-INVESTIGATOR: S h e i l a Cruikshank, R.N., B.Sc.N. Graduate Student/ Masters Program School of N u r s i n g U n i v e r s i t y o f B r i t i s h Columiba PRINCIPAL INVESTIGATOR/ FACULTY ADVISOR: Dr. E. Davies A s s o c i a t e P r o f e s s o r School of N u r s i n g U n i v e r s i t y o f B r i t i s h Columbia PURPOSE OF THE STUDY: The i n t e n t of t h i s study i s t o d e s c r i b e how Chinese f a m i l i e s manage the care of a f a m i l y member wit h cancer when he/she i s at home and i n the h o s p i t a l . I t i s a n t i c i p a t e d t h a t the r e s u l t s of t h i s study w i l l p r o v i d e nurses w i t h a b e t t e r understanding of the f a c t o r s which can make care of an i l l member e a s i e r f o r the f a m i l y . I t i s a l s o a n t i c i p a t e d t h a t t h i s study w i l l p r o v i d e groundwork necessary f o r f u r t h e r s t u d i e s l e a d i n g t o i n f o r m a t i o n t h a t nurses can use t o h e l p Chinese f a m i l i e s d e a l w i t h the s i t u a t i o n most e f f e c t i v e l y . I, ; agree to p a r t i c i p a t e i n the r e s e a r c h study d e c r i b e d above. I have had the study e x p l a i n e d t o me and I understand t h a t : a) I may r e f u s e t o comment or answer any q u e s t i o n at any time; .b) I may withdraw from the study at any time without n e g a t i v e e f f e c t on my f a m i l y member's car e ; c) I am f r e e t o stop the i n t e r v i e w s at any time; d) I t i s not the r e s e a r c h e r ' s i n t e n t t o p r o v i d e h e a l t h care; however, i n the event of a s e r i o u s concern, r e f e r r a l s w i l l be made t o the a p p r o p r i a t e person. e) I may not n e c e s s a r i l y d i r e c t l y b e n e f i t from p a r t i c i p a t i n g i n t h i s study. 183 Page 2 I expect that: a) although the length of the interview(s) w i l l depend on my tolerance, the average length of the interview(s) w i l l be 30-60 minutes; b) I w i l l be completing a pe n c i l and paper questionnaire that takes f i v e to ten minutes; c) I w i l l be interviewed twice either i n my home or i n the hos p i t a l ; d) the researcher w i l l be observing me during the interviews; e) the interviews w i l l be taped and transcribed and the tapes w i l l then be destroyed upon completion of the study; f) the tapes w i l l be l i s t e n e d to only by the researcher and faculty advisors; g) a l l t r a n s c r i p t s w i l l be i d e n t i f i e d only by code numbers; my name or the names of other family members w i l l not appear i n any research report, published or unpublished; h) the content of my discussions with the researcher w i l l be held i n s t r i c t confidence by the researcher and the faculty advisor. I have been given the opportunity to ask whatever questions I desire of the researcher and have had a l l such questions answered to my s a t i s f a c t i o n . I r e a l i z e I can ask for additional information at any time. I w i l l be given a copy of t h i s consent form, and I w i l l be given an opportunity to see a summary of the f i n a l report. Individual P a r t i c i p a t i n g Witness Date 184 Appendix G LETTER OF EXPLANATION Dear , My name i s S h e i l a Cruikshank. I am a r e g i s t e r e d nurse and a student i n the Masters i n Nursing Program at the U n i v e r s i t y o f B r i t i s h Columbia. During the past year while working at Mount Sa i n t Joseph H o s p i t a l / I have become i n c r e a s i n g l y i n t e r e s t e d i n conducting a study t o l e a r n from Chinese f a m i l i e s how they manage the care of a f a m i l y member with cancer when he/she i s at home and i n the h o s p i t a l . I b e l i e v e , we as h e a l t h care p r o f e s s i o n a l s , c o u l d be much more h e l p f u l t o Chinese f a m i l i e s i f we knew more about what Chinese f a m i l i e s do tomange the care, the f a c t o r s t h a t a f f e c t t h e i r a b i l i t y t o manage the care, the i n f l u e n c e o f t h e i r b e l i e f s on how they manage care, and t h e i r p r e f e r e n c e of l o c a t i o n o f c a r e . I would l i k e t o i n v i t e an a d u l t member of your f a m i l y who i s i n v o l v e d i n c a r i n g f o r your i l l f a m i l y member to p a r t i c i p a t e i n t h i s study. I f one f a m i l y member i s i n t e r e s t e d i n d i s c u s s i n g the study, I w i l l arrange t o meet with him/her t o d i s c u s s the study and answer any q u e s t i o n s . I f he/she agrees t o p a r t i c i p a t e , consent w i l l be obtained. I w i l l be a s k i n g the i n d i v i d u a l t o complete a shor t p e n c i l and paper q u e s t i o n n a i r e about h i s / h e r Chinese r o o t s at, t h i s time. I w i l l a l s o be ask i n g f o r two one-half t o one-hour v i s i t s w i t h the i n d i v i d u a l , at h i s / h e r convenience t o ask him/her que s t i o n s about the f a m i l y ' s experience with management of the c a r e . You are under no o b l i g a t i o n t o p a r t i c i p a t e i n t h i s study andd are f r e e t o withdraw from the study at any time. The care of your f a m i l y member w i l l i n no way be j e o p a r d i z e d . I f someone i n your f a m i l y would l i k e t o p a r t i c i p a t e , p l e a s e inform the nurse who has given t h i s l e t t e r t o you and she/he w i l l c o ntact me. By doing t h i s study, I hope t o l e a r n more about how Chinese f a m i l i e s manage care of an i l l f a m i l y member so t h a t I may c o n t r i b u t e t o the promotion of c u l t u r a l l y s e n s i t i v e and a p p r o p r i a t e h e a l t h c a r e . Thank you f o r your i n t e r e s t . I look forward t o d i s c u s s i n g t h i s study with a member of your f a m i l y . S h e i l a Cruikshank, R.N. B.Sc.N. Graduate Student, Masters Program School of Nursing, U n i v e r s i t y of B r i t i s h Columbia 185 Appendix H DEMOGRAPHIC DATA SHEET CHINESE FAMILIES IN SUPPORTIVE CARE We would l i k e t o be c l e a r about who everyone i s i n your f a m i l y . Please l i s t t h e i r names, how they are r e l a t e d t o the p a t i e n t , and t h e i r age. Name: R e l a t i o n s h i p Age: Name: : R e l a t i o n s h i p Age: Name: R e l a t i o n s h i p . Age: Name: R e l a t i o n s h i p Age:_ Name: R e l a t i o n s h i p Age Where does the p a t i e n t l i v e and who does he/she l i v e with? M a r i t a l Status o f : P a t i e n t : Year o f Marriage: Person b e i n g i n t e r v i e w e d Year: How long has your f a m i l y l i v e d i n Canada and p l a c e o f b i r t h : P a t i e n t : P a t i e n t ' s Spouse: Y o u r s e l f : What i s your f a m i l y ' s r e l i g i o u s p r e f e r e n c e ? What i s the occupation o f : P a t i e n t : P a t i e n t ' s Spouse: Y o u r s e l f : Your Spouse: Other f a m i l y members: 186 7. How many years of sc h o o l d i d each person i n the f a m i l y complete? P a t i e n t Person Being Other Interviewed Family Members Some h i g h s c h o o l : High s c h o o l c e r t i f i c a t e : Tech. s c h o o l / c o l l e g e diploma: U n i v e r s i t y degree: Graduate degree: 8. In what range i s your annual income f o r your household? (Check o f f the a p p r o p r i a t e range) Less than $8,000 $8,000 - 10>999 $11,000 - 14,999 $15,000 - 19,999 $20,000 - 34,999 $35, 000 - 49, 999 $50,000 - 64,999 more than 65,000 Thank you. APPENDIX I INFORMANTS' EIQ SINGLE ITEM SCORES FAMILIES ITEM A B C D E F MEAN 1 1 1 2 NA 1 2 1.4 2 1 4 1 NA 2 1 1.8 3 2 1 3 NA 1 2 1.8 4 3 4 2 NA 2 2 2.6 5 3 4 4 NA 4 3 3.6 6 3 2 2 NA 2 2 2.2 7 3 4 4 NA 2 3 3.2 8 3 4 3 NA 2 3 3 9 2 1 3 NA 3 2 2.2 1 0 2 1 1 NA 2 1 1.6 1 1 4 4 4 NA 2 2 3.2 12 3 4 4 NA 3 3 3.4 1 3 3 2 2 NA 2 2 2.2 14 3 4 3 NA 3 3 3.2 1 5 3 3 1 NA 3 2 2.4 TOTAL 39 43 39 NA 34 33 188 196 Approval of Student Project - Continued Certain projects meeting the above cr i te r ia would s t i l l require approval by the Cl in ica l Investigations Committee. The character ist ics necessitating this approval are as fol lows: 1. The project w i l l involve the use of an experimental agent or procedure which may cause harm or discomfort to the subject. 2. The project w i l l involve randomization. 3. The project is being supported f inancial ly by an organization external to the B.C. Cancer Agency and the student's education ins t i tu t ion . 4. The project poses unusual ethical questions concerning su i tab i l i t y for conduct within the B.C. Cancer Agency. I have reviewed the project which you submitted, and f ind that i t meets a l l of the above c r i t e r i a but does not have any of the character ist ics necessitating CIC approval. Thus, i t does not require further consideration by the Cl in ica l Investigations Committee. After meeting the conditions noted above for student projects, the study may proceed. JMC/sr pc: MS. LESLIE BRADLEY DR. MICHELE DESCHAMPS 

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