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Living with diabetes : the perspective of the Chinese elderly Lai, Magdalene Claudia 1988

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LIVING WITH DIABETES: THE PERSPECTIVE OF THE CHINESE ELDERLY By MAGDALENE CLAUDIA LAI B.Sc.N., The U n i v e r s i t y of B r i t i s h Columbia, 1981 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING i n THE FACULTY OF GRADUATE STUDIES (The School of Nursing) We accept t h i s t h e s i s as conforming to the r e q u i r e d standard THE UNIVERSITY OF BRITISH COLUMBIA A p r i l , 1988 © Magdalene C l a u d i a L a i , 1988 3 9 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 Nursing  The University of British Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 Date April 21st, 1988. DE-6n/81l THE ABSTRACT LIVING WITH DIABETES: CHINESE ELDERLY PERSPECTIVE i i T h i s study was designed to e x p l o r e how Chinese e l d e r l y informants with d i a b e t e s experience and manage t h e i r i l l n e s s at home. The method used i n conducting t h i s study was the phenomenological p e r s p e c t i v e of q u a l i t a t i v e r e s e a r c h . The Intent of the study was to understand the human experience of l i v i n g with d i a b e t e s and the s o c i o c u l t u r a l context i n which i t i s l i v e d . Data c o l l e c t i o n and a n a l y s i s ran c o n c u r r e n t l y . 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 nine Chinese informants who were diagnosed with l a t e onset d i a b e t e s and were undergoing i n s u l i n treatment a t home. Informants' ages ranged fora 69 to 90 years o l d . A l l informants are f i r s t g e n e r a t i o n immigrants i n Canada. The s p e c i f i c q uestions t h a t d i r e c t e d t h i s study addressed the Chinese e l d e r l y informants' experience of l i v i n g with d i a b e t e s , the meanings they a s s i g n e d to l i v i n g with d i a b e t e s , and the ways Chinese informants managed t h e i r d i a b e t e s . T h e o r e t i c a l sampling guided sample s e l e c t i o n and determined sample s i z e . The data were c o n s t r u c t e d based on a t o t a l of 21 i n t e r v i e w s with the nine informants. As the r e s e a r c h e r e x p l o r e d how the informants l i v e d with d i a b e t e s , informants gave d e t a i l e d accounts of how they viewed d i a b e t e s . Within the context of how they viewed d i a b e t e s , informants d e s c r i b e d an e n t i r e process they went through to make d e c i s i o n s i n everyday l i f e as they sought help and managed i i i t h e i r i l l n e s s . B a s e d on i n f o r m a n t s ' a c c o u n t s , a d e c i s i o n -m a k i n g m o d e l was f o r m u l a t e d . I n f o r m a n t s g a v e d e t a i l e d a c c o u n t s o f e a c h s t e p o f t h e d e c i s i o n - m a k i n g p r o c e s s , t o g e t h e r w i t h d e s c r i p t i o n s o f m e a n i n g s t h e y a s s i g n e d t o e a c h s t e p . The d a t a showed how i n f o r m a n t s made s e n s e o f t h e i r e x p e r i e n c e a s t h e y went t h r o u g h e a c h p h a s e o f t h e d e c i s i o n - m a k i n g p r o c e s s . The d e s c r i p t i o n s a l s o r e v e a l e d a n " i n n e r l o g i c " u s e d b y i n f o r m a n t s t o d i r e c t c h o i c e s t h e y make r e g a r d i n g h e a l t h m a t t e r s . I n t e r m s o f n u r s i n g p r a c t i c e , t h e s e f i n d i n g s s u p p o r t t h e nee d t o a t t e n d t o c l i e n t d e c i s i o n - m a k i n g , f r o m t h e c l i e n t s 1 p e r s p e c t i v e s . The f i n d i n g s a l s o a d d r e s s n u r s e s ' n e e d t o r e e v a l u a t e t h e i r p r o f e s s i o n a l r o l e i n r e l a t i o n t o c l i e n t s ' n e e d s a nd e x p e c t a t i o n s . W i t h r e g a r d t o n u r s i n g r e s e a r c h , t h e f i n d i n g s s u g g e s t t h e need t o f u r t h e r e x p l o r e t h e t o p i c o f d e c i s i o n m a k i n g f r o m b o t h t h e c l i e n t s ' and n u r s e s ' p e r s p e c t i v e s . i v T a b l e o f C o n t e n t s A b s t r a c t i i T a b l e o f C o n t e n t s i v A c k n o w l e d g e m e n t s v i C h a p t e r 1: INTRODUCTION 1 B a c k g r o u n d t o t h e P r o b l e m 1 C o n c e p t u a l Framework 3 P r o b l e m S t a t e m e n t and P u r p o s e o f t h e S t u d y 7 I n t r o d u c t i o n t o t h e M e t h o d o l o g y 9 P h i l o s o p h i c a l and M e t h o d o l o g i c a l P e r s p e c t i v e s 9 D e f i n i t i o n o f Terms 12 A s s u m p t i o n s 13 L i m i t a t i o n s 13 Summary 13 C h a p t e r 2: REVIEW OF SELECTED LITERATURE 15 S t u d i e s on D i a b e t e s 15 S t u d i e s on t h e C h i n e s e P o p u l a t i o n 18 Two A p p r o a c h e s t o t h e C o n c e p t u a l i z a t i o n o f t h e I l l n e s s E v e n t 21 S t u d i e s t h a t F o c u s on O b j e c t i v e F a c t s A b o u t t h e I l l n e s s E v e n t 21 S t u d i e s t h a t A t t e n d t o t h e M e a n i n g o f L i v i n g W i t h a n I l l n e s s 24 Summary 27 C h a p t e r 3: METHODOLOGY 29 S u b j e c t S e l e c t i o n 29 C r i t e r i a f o r S e l e c t i o n 29 R a t i o n a l e 30 R e c r u i t m e n t o f I n f o r m a n t s 30 C h a r a c t e r i s t i c s o f I n f o r m a n t s 31 D a t a C o l l e c t i o n a n d A n a l y s i s 33 E t h i c s a n d Human R i g h t s 36 Summary 37 C h a p t e r 4: THE INFORMANTS' ACCOUNTS 38 V i e w o f D i a b e t e s 39 Ca u s e o f D i a b e t e s 39 E x p l a n a t i o n s o f How D i a b e t e s Worked 43 V i e w s o f D i a b e t e s a s a n I l l n e s s 44 T r u s t i n B l o o d a n d / o r U r i n e T e s t s 45 E f f e c t s o f D i a b e t e s on I n f o r m a n t s ' L i v e s 47 M a k i n g H e a l t h D e c i s i o n s 49 E v a l u a t i o n o f H e a l t h S t a t u s 52 C h o i c e o f H e a l t h C a r e R e s o u r c e s 53 I n f o r m a n t s ' I n f o r m a t i o n C o l l e c t i n g 79 V i n f o r m a n t s ' A n a l y s i s o f H e a l t h c a r e R e s o u r c e s 79 I n f o r m a n t s ' C r e a t i o n o f Own T r e a t m e n t Regime.87 A c t i o n 89 Summary 89 C h a p t e r 5: DISCUSSION 92 Two A p p r o a c h e s t o D e c i s i o n - M a k i n g 92 M a k i n g H e a l t h D e c i s i o n s 95 I s s u e s a n d D i s c r e p a n c i e s b e t w e e n C l i e n t s ' a n d H e a l t h P r o f e s s i o n a l s ' E x p l a n a t o r y M o d e l s 103 Summary 110 C h a p t e r 6: SUMMARY, CONCLUSIONS, AND IMPLICATIONS FOR NURSING I l l Summary and C o n c l u s i o n s I l l I m p l i c a t i o n s f o r N u r s i n g P r a c t i c e 114 I m p l i c a t i o n s f o r N u r s i n g E d u c a t i o n 117 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 118 B i b l i o g r a p h y 122 A p p e n d i c e s 129 A p p e n d i x A - I n f o r m a t i o n and C o n s e n t F o r m 130 A p p e n d i x B - Sample T r i g g e r Q u e s t i o n s 132 A p p e n d i x C - S o c i o d e m o g r a p h i c D a t a 133 ACKNOWLEDGEMENTS v i I would l i k e to thank the members of my t h e s i s committee, P r o f e s s o r s Joan Anderson ( c h a i r person) and Judy Lynam f o r the guidance they have given me i n t h i s r e s e a r c h p r o c e s s . I thank Dr. Joan Anderson f o r the i n s p i r a t i o n she g i v e s , and f o r s h a r i n g her e x p e r t i s e and her u n f a i l i n g enthusiasm i n phenomenological r e s e a r c h . I a l s o thank Judy Lynam f o r her u s e f u l feedback and c l e a r d i r e c t i o n s . There were s e v e r a l c o l l e a g u e s who e s p e c i a l l y supported me throughout t h i s p r o c e s s . Thank you, Sigga and M a r j o r i e , f o r the c o n s i s t e n t warm and empathetic atmosphere both of you provide as we search f o r deeper meanings of human ex p e r i e n c e s . I would l i k e to thank my l o v i n g s i s t e r s , my f a m i l y and f r i e n d s f o r t h e i r c o n t i n u a l encouragement, and the f a i t h they have i n me to succeed. And thank you, Miss Aubert, f o r a l l her p r a y e r s . F i n a l l y , I would l i k e to express my h e a r t f e l t thanks to the nine informants. They have g i v e n me deep i n s i g h t s i n t o t h e i r e x periences and a renewed look a t the wonders of the phenomenon of the human c o n d i t i o n . 1 C h a p t e r 1 INTRODUCTION B a c k g r o u n d t o t h e P r o b l e m The f o c u s o f t h i s r e s e a r c h s t u d y i s t o e x p l o r e how C h i n e s e i n f o r m a n t s w i t h d i a b e t e s e x p e r i e n c e and manage t h e i r i l l n e s s a t home. D i a b e t e s m e l l i t u s , more commonly c a l l e d d i a b e t e s , i s r e c o g n i z e d a s a m a j o r c h r o n i c d i s e a s e a f f e c t i n g a l l age g r o u p s . The m a g n i t u d e o f t h i s d i s e a s e i s r e f l e c t e d i n C a n a d i a n ^ s t a t i s t i c s , w h i c h s t a t e t h a t a s many a s 379,000 C a n a d i a n s a r e r e p o r t e d t o h a v e d i a b e t e s ( C a n a d i a n H e a l t h s u r v e y , 1 9 8 1 ) . A l t h o u g h t h e r e i s no c u r e f o r d i a b e t e s a t -the p r e s e n t t i m e , m e d i c a l - and t e c h n o l o g i c a l a d v a n c e s have a s s i s t e d g r e a t l y i n t h e p r o l o n g a t i o n o f l i v e s o f p e o p l e s u f f e r i n g f r o m d i a b e t e s . L i k e o t h e r c h r o n i c i l l n e s s e s , p e o p l e a f f l i c t e d w i t h d i a b e t e s n o t o n l y have m e d i c a l p r o b l e m s , b u t t h e y s h a r e many s o c i a l a nd p s y c h o l o g i c a l p r o b l e m s ( S t r a u s s , 1 9 7 5 ) . T h e y a r e n o t o n l y f a c e d w i t h a c h r o n i c s i t u a t i o n w h i c h o f t e n l e a d s t o s e r i o u s c o m p l i c a t i o n s , b u t t h e y a l s o h a v e t o d e a l w i t h a t r e m e n d o u s a l t e r a t i o n o f l i f e s t y l e * i n v o l v i n g d i e t , e x e r c i s e , m e d i c a t i o n , u r i n e o r b l o o d - g l u c o s e m o n i t o r i n g , and f o o t c a r e ( H a r r i s , L i n n , a n d P o l l a c k , 1 9 8 4 ) . I n a d d i t i o n , ' d i a b e t e s m e l l i t u s p r e s e n t s i t s own u n i q u e c h a l l e n g e i n t e r m s o f i t s t r e a t m e n t r e g i m e and w a r r a n t s f u r t h e r r e s e a r c h b y h e a l t h p r o f e s s i o n a l s . More s o t h a n a n y o t h e r d i s e a s e , p r o p e r t h e r a p y f o r d i a b e t e s m e l l i t u s r e q u i r e s p a t i e n t s t o p a y d a y - b y - d a y , e v e n h o u r - b y - h o u r , a t t e n t i o n t o some o f t h e most b a s i c a s p e c t s o f l i v i n g ( W i l l i a m s , 1 9 8 1 ) . T h e s e p e r s o n s w i t h d i a b e t e s assume p r i m a r y r e s p o n s i b i l i t y f o r d a i l y c a r e , most o f t e n i n t h e i r own homes. O f t e n , h e a l t h p r o f e s s i o n a l s 2 p l a y o n l y a minor r o l e by p r o v i d i n g p e r i o d i c a s s e s s m e n t , h e a l t h e d u c a t i o n , and s u p p o r t to a s s i s t the c l i e n t and f a m i l y i n h e a l t h maintenance a c t i v i t i e s (Beebe, 1981) . These h e a l t h p r o f e s s i o n a l s u s u a l l y do not have d i r e c t c o n t a c t w i th the person w i th d i a b e t e s f o r more than s i x to twelve of h i s 5,800 waking hours per year (Wi l l iams> 1981) . A l t h o u g h c l i e n t s assume pr imary r e s p o n s i b i l i t y f o r managing t h e i r d i s e a s e , t h e r e i s ye t much t o be e x p l o r e d as to how c l i e n t s e x p e r i e n c e and manage t h e i r i l l n e s s i n the c o n t e x t of t h e i r d a i l y l i v e s . The r e s e a r c h e r ' s i n t e r e s t i n s t u d y i n g how Ch inese Informants e x p e r i e n c e and manage t h e i r i l l n e s s e s p e c i a l l y grew out of her y e a r s of work i n p u b l i c h e a l t h . Through working wi th Ch inese c l i e n t s wi th d i a b e t e s , the r e s e a r c h e r was c h a l l e n g e d by the d i v e r g e n t views on h e a l t h and i l l n e s s h e l d by c l i e n t s and h e a l t h p r o f e s s i o n a l s . Both Ch inese c l i e n t s and h e a l t h p r o f e s s i o n a l s o f t e n d i f f e r e d i n what they regarded as a p p r o p r i a t e ways to manage d i a b e t e s . In managing d i a b e t e s i n t h e i r d a i l y l i v e s , Ch inese c l i e n t s o f t e n u t i l i z e d the s u p p o r t of f a m i l y members, f r i e n d s , h e r b a l i s t s , Ch inese d o c t o r s t r a i n e d i n Ch inese m e d i c i n e , a c u p u n c t u r i s t s , as w e l l as Western h e a l t h p r o f e s s i o n a l s . Western h e a l t h p r o f e s s i o n a l s , on the o ther hand, o f t e n p l a c e d s t r o n g emphasis on adherence to m e d i c a l r e g i m e s , and had l i t t l e u n d e r s t a n d i n g of a l t e r n a t e systems of c a r e c l i e n t s were accustomed t o . As a r e s u l t , c o n f l i c t s o f t e n a r o s e between h e a l t h p r o f e s s i o n a l s and c l i e n t s due to a l a c k of u n d e r s t a n d i n g of each o t h e r s ' v iew of d i a b e t e s . K le inman (1978) a d d r e s s e d the c o n f l i c t t h a t a r i s e s between l a y and p r o f e s s i o n a l people when they d i v e r g e i n t h e i r views of 3 d i s e a s e and i l l n e s s . He developed a c u l t u r a l system model to g u i d e h e a l t h p r o f e s s i o n a l s i n g a i n i n g a broader and c l e a r e r p e r s p e c t i v e on c l i e n t s ' experience of s i c k n e s s and t h e i r management of t h e i r i l l n e s s . Conceptual Framework Kleinman's c u l t u r a l system model (1978) was developed i n response to the p e r c e i v e d discordance between l a y and p r o f e s s i o n a l i n t e r p r e t a t i o n s of d i s e a s e and i l l n e s s , and the c r u c i a l r o l e s o c i a l and c u l t u r a l f a c t o r s p l a y i n i n f l u e n c i n g s i c k n e s s and c a r e . Kleinman (1978) made a d i s t i n c t i o n between d i s e a s e and i l l n e s s . Disease r e p r e s e n t s a b n o r m a l i t i e s i n the s t r u c t u r e and f u n c t i o n of body organs and systems. Conversely, i l l n e s s r e p r e s e n t s experiences of d i s v a l u e d changes i n s t a t e s of being and i n s o c i a l f u n c t i o n , the human experience of s i c k n e s s . He addressed the d i s c r e p a n c y when p a t i e n t s view i l l n e s s problems as c o n s t i t u t i n g the e n t i r e d i s o r d e r , when, on the c o n t r a r y , h e a l t h p r o f e s s i o n a l s d i s r e g a r d s o c i a l and c u l t u r a l f a c t o r s i n f l u e n c i n g d i s e a s e and treatment but look upon the d i s e a s e as the d i s o r d e r . The author r e c o g n i z e d that i l l n e s s , u n l i k e d i s e a s e , i s shaped by c u l t u r a l f a c t o r s , and i s embedded i n a complex f a m i l y , s o c i a l and c u l t u r a l nexus. Kleinman (1978) proposed the c u l t u r a l system model to a s s i s t h e a l t h p r o f e s s i o n a l s understand the c l i e n t s ' i l l n e s s experience (see F i g u r e 1 ) . He c o n c e p t u a l i z e d three s t r u c t u r a l domains w i t h i n the s o c i a l context of h e a l t h c a r e : p r o f e s s i o n a l , popular ( f a m i l y , s o c i a l network, community), and 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 ) . Each domain may be c o n c e p t u a l i z e d as e x p l a n a t o r y models i n f l u e n c e d by s o c i a l and c u l t u r a l determinants. Each domain has i t s own e x p l a n a t o r y model with 4 d i s t i n c t e x p l a n a t i o n s of s i c k n e s s , e x p l a n a t i o n s s p e c i f i c to the s o c i a l p o s i t i o n s occupied and the systems of meaning employed. These e x p l a n a t o r y models i n t u r n i n f l u e n c e 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 . For example, i n d i v i d u a l s i n the p r o f e s s i o n a l domain may e x p l a i n , understand, and manage i l l n e s s f o c u s i n g 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 . On the other hand, the popular domain bases i t s e x p l a n a t o r y model on pe r s o n a l and s o c i a l experiences of i l l n e s s . I n t e r a c t i o n s between domains i n v o l v e t r a n s a c t i o n s or n e g o t i a t i o n between these d i f f e r e n t e x p l a n a t o r y models. As a r e s u l t , these domains may complement, compete with, or d i s t o r t one another. SOCIOCULTURAL SYSTEMS Medical Care System(s) ( P r o f e s s i o n a l ) Popular C u l t u r a l System of Health Care ( I n d i v i d u a l and Family Based) Folk Care System(s) F i g u r e 1. Kleinman's 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 (Kleinman, 1978, p.422) 5 Among the three domains, about 70% to 90% of h e a l t h care takes p l a c e i n the popular domain. Most i l l n e s s episodes never enter the p r o f e s s i o n a l or f o l k domains. When they do, d e c i s i o n s about where and when to seek care, how long to remain i n c a r e , and how to evaluate treatment a l s o occur i n the popular domain, most commonly i n the context of the f a m i l y (Kleinman, E i s e n b e r g , and Good, 1978). Kleinman's c u l t u r a l system model i s p a r t i c u l a r l y r e l e v a n t to n u r s i n g as i t d i r e c t s nurses to explore d i f f e r e n t s o c i o c u l t u r a l systems. The " c l i e n t system" and the "nursing system" may be c o n c e p t u a l i z e d as separate s o c i o c u l t u r a l systems with t h e i r own e x p l a n a t o r y models due to d i f f e r e n t b e l i e f s , v a l u e s , norms, and p e r c e p t i o n s of h e a l t h and i l l n e s s (Anderson, 1986) . As nurses I n t e r a c t with c l i e n t s , i t becomes c r u c i a l t h a t they be aware of both s o c i o c u l t u r a l systems. Nursing i s concerned with c a r i n g f o r c l i e n t s and h e l p i n g them cope with t h e i r i l l n e s s . Only by understanding c l i e n t s ' i l l n e s s e xperiences w i l l nurses be ab l e to gi v e a p p r o p r i a t e and ac c e p t a b l e care to them. As nurses help c l i e n t s cope with t h e i r i l l n e s s , nurses must a l s o take i n t o account the meaning the i l l n e s s has f o r them, and the e f f e c t s the i l l n e s s has on t h e i r everyday l i v e s . Understanding the c l i e n t system and the nurse's own system i s e s p e c i a l l y c r i t i c a l as nurses work with c l i e n t s from d i f f e r e n t c u l t u r a l groups. Such understanding helps nurses to focus on the m u l t i p l e determinants which shape c l i e n t s ' e x p e r i e n c e s . As w e l l , nurses are d i r e c t e d to examine t h e i r own v a l u e s , b e l i e f s , p e r c e p t i o n s of h e a l t h and i l l n e s s , and the 6 s o c i a l o r g a n i z a t i o n a l s t r u c t u r e s of h e a l t h care which order and determine people's s u b j e c t i v e experiences (Anderson, 1986). L a s t l y , understanding both the c l i e n t and the n u r s i n g system i s e s p e c i a l l y important as nurses n e g o t i a t e with c l i e n t s f o r the p r o v i s i o n of c u l t u r a l l y a c c e p t a b l e , e f f e c t i v e , and economical c a r e . Numerous nurse r e s e a r c h e r s and educators have supported the need to understand the c l i e n t s ' e x p l a n a t o r y models of i l l n e s s . As Benner (1984) s t a t e d , Nurses must remember, and expert nurses do, t h a t p a t i e n t s o f t e n have t h e i r own i n t e r p r e t a t i o n and understanding of t h e i r c o n d i t i o n . A l l o w i n g them to express t h i s , as w e l l as r e s p e c t i n g and b u i l d i n g on t h e i r i n t e r p r e t a t i o n s , can p l a y an important r o l e i n the p a t i e n t ' s i l l n e s s and r e c o v e r y experience, (p.84) Davis (1978) maintained t h a t nurses can b e t t e r provide care when they are able t o understand and take d i r e c t i o n from c l i e n t s ' p e r s p e c t i v e s . L e i n i n g e r (1974) s t r e s s e d the importance of a t t e n d i n g to the f a c t t h a t c l i e n t s ' d i f f e r e n t c u l t u r a l needs as human values are c u l t u r a l l y d e r i v e d , d e f i n e d , and r e i n f o r c e d . J.M. Anderson (1985) argued t h a t i n d i v i d u a l s ' i l l n e s s experiences should not be viewed o n l y through the c l i e n t s ' s o c i o c u l t u r a l system, but must a l s o be understood w i t h i n the s o c i a l o r g a n i z a t i o n a l s t r u c t u r e s of the h e a l t h care system. T h i s i s because these o r g a n i z a t i o n a l s t r u c t u r e s p l a y an important p a r t i n o r d e r i n g and determining people's s u b j e c t i v e e x p e r i e n c e s . Besides understanding the c l i e n t system, she advocated the need to explore the n u r s i n g and f o l k systems. 7 Kleinman's c u l t u r a l system model has been used e x t e n s i v e l y b y nurse r e s e a r c h e r s . Anderson and Chung ( 1982a) h a v e used Kleinman's framework to guide t h e i r study on how parents c o n s t r u c t t h e i r i l l n e s s experience with t h e i r c h i l d i n the context of everyday l i f e . T h e i r study has given nurses tremendous i n s i g h t i n t o the meaning the s i c k n e s s has f o r the f a m i l y and how parents manage the r o u t i n e s of e v e r y d a y l i f e i n t h i s c o n t e x t . In another study, Kleinman's framework helped J.M. Anderson (1986) i l l u s t r a t e the dissonance t h a t may e x i s t i n e x p e c t a t i o n s between p r a c t i t i o n e r s and immigrant f a m i l i e s . As a r e s u l t , she advocated the importance of i n c l u d i n g a l l p a t i e n t s i n decision-making processes t h a t a f f e c t t h e i r l i v e s . The s t u d i e s mentioned are i n v a l u a b l e and exemplify how r e s e a r c h to e x p l o r e e x p l a n a t o r y models c o n t r i b u t e s to a s i g n i f i c a n t body of n u r s i n g knowledge to improve p a t i e n t c a r e . Kleinman's c u l t u r a l system model was p a r t i c u l a r l y u s e f u l f o r t h i s study as i t provided d i r e c t i o n to i n q u i r e i n t o the experience of l i v i n g with d i a b e t e s . Problem Statement and Purpose of the Study The g e n e r a l problem addressed i n t h i s study i s t h a t more a t t e n t i o n needs to b e focused on the experience of l i v i n g with d i a b e t e s and ways i l l n e s s i s managed b y Chinese informants. Diabetes i s unique among c h r o n i c i l l n e s s e s . Informants not o n l y bear tremendous r e s p o n s i b i l i t y f o r day-by-day, even hour-by-hour s e l f care i n t h e i r home, they a l s o face s e r i o u s c o m p l i c a t i o n s f o r not managing t h e i r i l l n e s s . Although informants p l a y the primary r o l e i n the treatment of t h e i r d i s e a s e , there i s s t i l l a lack of knowledge of how they experience and a c t i v e l y manage t h e i r i l l n e s s . Moreover, data 8 based on the informants* p e r s p e c t i v e s c o n t r i b u t e to a wealth of knowledge t h a t i s seldom e x p l o r e d . Large numbers of Chinese immigrants are consumers w i t h i n the Canadian h e a l t h care system. The Chinese c u l t u r e r e p r e s e n t s a d i s t i n c t network of h e a l t h b e l i e f s and p r a c t i c e s . These b e l i e f s and p r a c t i c e s p l a y an important p a r t i n determining what people's e x p l a n a t o r y models of i l l n e s s are l i k e . The e x p l a n a t o r y models of i l l n e s s of Chinese c l i e n t s with d i a b e t e s may d i f f e r from t h a t of h e a l t h p r o f e s s i o n a l s i n the western h e a l t h care system. Hence, s t u d i e s of these Chinese c l i e n t s ' experience and management of t h e i r i l l n e s s are e s s e n t i a l . S t u d i e s of t h i s nature enable h e a l t h p r o f e s s i o n a l s to understand the meaning of d i a b e t e s and i t s i m p l i c a t i o n s f o r t h i s e t h n i c group. T h e r e f o r e , the purpose of the study i s to expl o r e the Chinese informant's experience of d i a b e t e s , and to understand how these informants manage d i a b e t e s i n the context of t h e i r d a i l y l i v e s . Based on Kleinman's c u l t u r a l system model, s p e c i f i c q u e s t i o n s were addressed i n t h i s study t o e x p l o r e the phenomena. The s p e c i f i c q u e s t i o n s that d i r e c t e d t h i s study are : -1. What i s the Chinese informant's experience of l i v i n g with d i a b e t e s ? 2. What does l i v i n g with d i a b e t e s mean to Chinese informants? 3 . How do Chinese informants manage t h e i r d i a b e t e s ? 9 I n t r o d u c t i o n to the Methodology The p h e n o m e n o l o g i c a l method of q u a l i t a t i v e r e s e a r c h was chosen f o r t h i s study. T h i s approach r e p r e s e n t s both a phi l o s o p h y as w e l l as a method of r e s e a r c h . Q u a l i t a t i v e r e s e a r c h , as w e l l as the phenomenological approach, w i l l be d i s c u s s e d . The r a t i o n a l e s f o r s e l e c t i n g a phenomenological approach w i l l be p r o v i d e d . P h i l o s o p h i c a l a n d M e t h o d o l o g i c a l p e r s p e c t i v e s The r e s e a r c h e r chose the q u a l i t a t i v e method of r e s e a r c h fo r s e v e r a l reasons. J u s t as there are m u l t i p l e methods a v a i l a b l e f o r g a i n i n g informed understanding about the world around us, there are a l s o m u l t i p l e p e r s p e c t i v e s f o r i n t e r p r e t i n g t h a t world, depending on the problem t h a t i s being explored ( R i s t , 1979). The r e s e a r c h e r chose the q u a l i t a t i v e method of r e s e a r c h f o r t h i s study because the b a s i c assumption of q u a l i t a t i v e r e s e a r c h i s congruent with the purpose of t h i s study and the problems e x p l o r e d . Q u a l i t a t i v e r e s e a r c h emphasizes t h a t there i s value to the a n a l y s i s of both the inner experience and outer behaviour of a s u b j e c t . Q u a l i t a t i v e r e s e a r c h a l s o attempts to d i s c o v e r how persons i n t e r p r e t and give meaning to s i t u a t i o n s ( R i s t , 1979). Phenomenology, which r e p r e s e n t s one type of q u a l i t a t i v e approach, i s the study of human experience from the person's p e r s p e c t i v e (Knaack, 1984). Two p h i l o s o p h i c a l themes are inherent i n the phenomenological approach. The f i r s t theme r e c o g n i z e s consciousness as simultaneous c o n t a c t with the world and with o n e s e l f (Munhall and O i l e r , 1986). Phenomenology aims to e l i c i t from people i n f o r m a t i o n they are conscious o f , and a c q u i r e i n f o r m a t i o n t h a t i s meaningful to them. Phenomenology, 10 . t h e r e f o r e , does not aim to d e s c r i b e the s i t u a t i o n as i t i s i n an o b j e c t i v e manner. Instead, the u l t i m a t e g o a l i s to o b t a i n the s u b j e c t i v e , i n t e r p r e t e d experience of i n d i v i d u a l s . A second theme i s t h a t phenomenology attempts to understand human experience (Munhall and O i l e r , 1986). Phenomenology adopts a h o l i s t i c view and c o n s i d e r s a l l t h a t i s a v a i l a b l e i n the experience under study. The focus of a t t e n t i o n c e n t e r s on experience as i t i s l i v e d i n the complexity of i t s context (Munhall and o i l e r , 1986). The phenomenological approach was chosen f o r t h i s r e s e a r c h study as the res e a r c h e r aimed to e l i c i t informants' s u b j e c t i v e experiences of l i v i n g with d i a b e t e s . As a theory, the phenomenological method of r e s e a r c h i s a l s o c o n c e p t u a l l y congruent with Kleinman's e x p l a n a t o r y models (1978). T h i s i s because both advocate that humans s u b j e c t i v e l y i n t e r p r e t experiences based on what i s meaningful t o them. Phenomenological r e s e a r c h has s p e c i a l s i g n i f i c a n c e to the nu r s i n g p r o f e s s i o n , as t h i s p r o f e s s i o n values the viewpoint that human phenomena are h o l i s t i c and meaningful. The phenomenological p e r s p e c t i v e i s consonant with t h i s viewpoint. Ornery (1983) noted t h a t phenomenological approaches c o n s i d e r " a l l t h a t i s a v a i l a b l e i n the experience under study, both s u b j e c t i v e and o b j e c t i v e , and s t r i v e to understand the t o t a l meaning t h a t the experience has had f o r the p a r t i c i p a n t s " (p.62). Many nurse r e s e a r c h e r s have r e c o g n i z e d the value of phenomenological methods. For example, Watson (1985) supported the use of phenomenological methods i n n u r s i n g r e s e a r c h . She point e d out t h a t , as a humanistic d i s c i p l i n e , nurses should 11 choose r e s e a r c h methods t h a t "allow f o r the s u b j e c t i v e , inner world o£ personal meanings o£ the nurse and the other person" (p.17). O i l e r (1982) s t a t e d t h a t the phenomenological approach merits s e r i o u s a t t e n t i o n from nurses as i t opens avenues f o r nurses to explore the human phenomena. As she a s s e r t e d , t h i s approach " s h i f t s a l l e g i a n c e t o a v a l u i n g of enlargement r a t h e r than r e d u c t i o n , g e n e r o s i t y r a t h e r than economy, complexity r a t h e r than s i m p l i c i t y , the l e n s r a t h e r than the hammer" (Psathas c i t e d i n O i l e r , 1982, p.181). F o l l o w i n g the goals of phenomenological r e s e a r c h , the r e s e a r c h e r alms to understand the human experience of l i v i n g with an i l l n e s s or d i s e a s e , and the s o c i o c u l t u r a l context i n which i t i s l i v e d . In the process of data c o l l e c t i o n and a n a l y s i s , the r e s e a r c h e r a c t i v e l y p a r t i c i p a t e s i n data c o l l e c t i o n . The i n t e r p r e t a t i o n of data, t h e r e f o r e , i s dependent on how r e a l i t y i s c o n s t r u c t e d between both the r e s e a r c h e r and the informants d u r i n g data c o l l e c t i o n and a n a l y s i s (Munhall and O i l e r , 1986). The c r i t e r i a by which q u a l i t a t i v e r e s e a r c h i s judged i n c l u d e the c r e d i b i l i t y of r e s e a r c h d a t a . A q u a l i t a t i v e study i s c r e d i b l e when I t presents such f a i t h f u l d e s c r i p t i o n s or i n t e r p r e t a t i o n s of human experience t h a t the people having t h a t experience would immediately r e c o g n i z e the d e s c r i p t i o n s as s i m i l a r to t h e i r own. A study i s a l s o c r e d i b l e when other people, such as other r e s e a r c h e r s or readers, can recognize the experience when confronted with i t a f t e r having o n l y read about i t i n a study (Sandelowski, 1986). To conclude, the phenomenological method of q u a l i t a t i v e r e s e a r c h was deemed e s s e n t i a l f o r t h i s r e s e a r c h as the 12 p h i l o s o p h y and methodologies of t h i s approach are congruent with the purpose of the study and the problem to be e x p l o r e d . A l s o , the phenomenological method i s regarded as having s p e c i a l s i g n i f i c a n c e to the n u r s i n g p r o f e s s i o n as i t o f f e r s tremendous p o t e n t i a l f o r e x p l o r i n g the phenomenon of human experience. D e t a i l s of the methodological process w i l l be d e s c r i b e d i n Chapter 3. P e f i n i t i o n s o f T e r m s Terms which may be s u b j e c t to ambiguous i n t e r p r e t a t i o n s have been d e f i n e d below i n order t o e x p l i c i t l y s t a t e the meanings they hold i n t h i s study. 1. Chinese informant with d i a b e t e s - f o r the purpose of t h i s study (see R a t i o n a l e ) , the Chinese informant with d i a b e t e s r e f e r r e d to an i n d i v i d u a l who was aged over f o r t y , was of Chinese e t h n i c o r i g i n , and i s a f i r s t g e n e r a t i o n immigrant i n Canada. The i n d i v i d u a l a c q u i r e d l a t e onset d i a b e t e s (Type II) and r e q u i r e d i n s u l i n treatment. The i n d i v i d u a l was managing h i s / h e r d i a b e t e s a t home. 2. d i a b e t e s -an endocrine d i s o r d e r which occurs when i n s u l i n s e c r e t i o n i s d e f i c i e n t , r e s u l t i n g i n abnormally high blood sugar l e v e l s i n the body. I n d i v i d u a l s with d i a b e t e s face a tremendous a l t e r a t i o n of l i f e s t y l e i n v o l v i n g d i e t , e x e r c i s e , medication, u r i n e or blood glucose monitoring, and foot care ( H a r r i s et a l . , 1984). Moreover, these i n d i v i d u a l s face s e r i o u s consequences f o r not managing t h e i r d i a b e t e s . 3. experience with d i a b e t e s -the process of l i v i n g with d i a b e t e s . 4. e x p l a n a t o r y model - e x p l a n a t i o n of s i c k n e s s which i n f l u e n c e s the understanding of the cause of the 13 i l l n e s s , the p e r c e p t i o n of the i l l n e s s e xperience, and management of i l l n e s s (Kleinman et a l . , 1978). 5, management of d i a b e t e s -the way an i n d i v i d u a l handles, c o n t r o l s , and/or t r e a t s d i a b e t e s . Assumptions S e v e r a l assumptions were made by the r e s e a r c h e r i n approaching t h i s study. The r e s e a r c h e r assumed t h a t people may have v a r y i n g i n t e r p r e t a t i o n s of i l l n e s s depending on t h e i r own e x p l a n a t o r y models, and that people experience i l l n e s s d i f f e r e n t l y . The r e s e a r c h e r a l s o assumed t h a t informants with d i a b e t e s a c t i v e l y managed t h e i r i l l n e s s a t home. Another assumption was t h a t s o c i a l and c u l t u r a l f a c t o r s i n f l u e n c e the informants' p e r c e p t i o n of i l l n e s s and how they manage t h e i r i l l n e s s . L a s t l y , the r e s e a r c h e r assumed t h a t informants' d e s c r i p t i o n s of t h e i r i l l n e s s experience r e p r e s e n t a c t u a l accounts of r e a l i t y . L i m i t a t i o n s Due to t r a n s p o r t a t i o n c o n s t r a i n t s , informants were s e l e c t e d from one urban a r e a . The r e s e a r c h e r , t h e r e f o r e , r e c o g n i z e s t h a t these Informants represented a s p e c i a l i z e d subgroup of the p o p u l a t i o n , whose experiences may d i f f e r from experiences of r u r a l p o p u l a t i o n s . Summary T h i s chapter has d e s c r i b e d the background to the problem, i d e n t i f i e d the problem statement and purpose of the study, and g i v e n an i n t r o d u c t i o n to the methodology. The p o s i t i o n taken by the r e s e a r c h e r i s t h a t i n order f o r h e a l t h p r o f e s s i o n a l s to n e g o t i a t e care t h a t i s e f f e c t i v e and c u l t u r a l l y a c c e p t a b l e to c l i e n t s , h e a l t h p r o f e s s i o n a l s must take a f i r s t s t e p to 14 understand c l i e n t s * e x p l a n a t o r y models of i l l n e s s . The re s e a r c h e r must a l s o attempt to understand how c l i e n t s manage t h e i r i l l n e s s i n the context of t h e i r l i v e s . As r e s e a r c h e r s attempt t o e l i c i t c l i e n t s ' e x p l a n a t i o n s of t h e i r i l l n e s s and understand i l l n e s s from the c l i e n t s ' p e r s p e c t i v e s , f u r t h e r s t u d i e s w i l l be conducted to expl o r e the human phenomenon. Th i s study has been designed to explore how Chinese c l i e n t s with d i a b e t e s experience and manage t h e i r i l l n e s s i n the context of d a i l y l i f e . The f o l l o w i n g chapter w i l l examine l i t e r a t u r e r e l e v a n t to the problem and purpose of the study. This l i t e r a t u r e review w i l l i n c l u d e s t u d i e s r e l a t e d to d i a b e t e s , the Chinese p o p u l a t i o n , the c o n c e p t u a l i z a t i o n of the i l l n e s s event, and the c o n c e p t u a l i z a t i o n of the management of i l l n e s s . 15 Chapter 2 REVIEW OF SELECTED LITERATURE In t h i s s e c t i o n , background l i t e r a t u r e w i l l be provided to e x p l a i n why i t was important to e x p l o r e how Chinese informants with d i a b e t e s experience and manage d i a b e t e s . The l i t e r a t u r e review i s d i v i d e d i n t o three s e c t i o n s . A f i r s t s e c t i o n e x p l a i n s why d i a b e t e s was s t u d i e d . A second s e c t i o n e x p l a i n s why Chinese informants were i n t e r v i e w e d . L a s t l y , a t h i r d s e c t i o n presents two approaches authors use to c o n c e p t u a l i z e the i l l n e s s event. S t u d i e s on Diabetes As mentioned e a r l i e r (see Background to the Problem), people a f f l i c t e d with d i a b e t e s are not o n l y faced with a c h r o n i c s i t u a t i o n t h a t may lead to s e r i o u s c o m p l i c a t i o n s , they a l s o have to d e a l with complex day-to-day management of t h e i r i l l n e s s . T h e r e f o r e , d i a b e t e s presents i t s own c h a l l e n g e amongst c h r o n i c i l l n e s s e s , and deserves f u r t h e r study by h e a l t h p r o f e s s i o n a l s . Numerous p r o f e s s i o n a l s i n the h e a l t h care and s o c i a l s c i e n c e s f i e l d s have c o n t r i b u t e d to the e x t e n s i v e r e s e a r c h on d i a b e t e s . V a l u a b l e s t u d i e s on d i a b e t e s concentrated on the p a t h o p h y s i o l o g y of d i a b e t e s , the treatment of c o m p l i c a t i o n s , d i e t therapy, and drug therapy. As a r e s u l t , major advances have been made i n the treatment of d i a b e t e s r e s u l t i n g from these r e s e a r c h s t u d i e s , the u t i l i z a t i o n of new knowledge, together with t e c h n o l o g i c a l advances. In h e l p i n g c l i e n t s t o manage t h e i r d i a b e t e s e f f e c t i v e l y , h e a l t h p r o f e s s i o n a l s have I n c r e a s i n g l y acknowledged the important r o l e they p l a y as p a t i e n t educators. W i t h i n the 16 f i e l d of n u r s i n g , s t u d i e s have been done to examine how nurses can be a c t i v e l y i n v o l v e d i n d i a b e t i c education, and to f i n d out about the s k i l l s and knowledge r e q u i r e d of these nurse educators ( G u t h r i e , 1986). Some r e s e a r c h has a l s o focused on the educa t i o n of p a t i e n t s with d i a b e t e s from other c u l t u r a l groups. Researchers have d e s c r i b e d c u l t u r a l f a c t o r s t h a t i n f l u e n c e p a t i e n t behaviour, and d i s c u s s e d i t s r e l e v a n c e to p a t i e n t e d u c a t i o n (Jackson and Broussard, 1987; H a l l , 1 9 8 7 ) . E d u c a t i o n a l programs l i k e the Native Diabetes Program (Hagey, 1984) have been developed to c a t e r to the unique needs, v a l u e s , and b e l i e f s of people belonging to d i f f e r e n t c u l t u r a l groups. With regards t o d i a b e t i c e d u c a t i o n i n g e n e r a l , emphasis was placed on h e l p i n g c l i e n t s to be we l l - i n f o r m e d , t r a i n e d , and motivated i n d i v i d u a l s (Hess, Davis, and H a r r i s o n , 1986). Many s t u d i e s have a l s o concentrated on d e s i g n i n g e f f e c t i v e and c r e a t i v e s t r a t e g i e s i n p a t i e n t e d u c a t i o n to help c l i e n t s with d i a b e t e s adhere to medical regimens (Lockwood, Frey, G l a d i s h , and H i s s , 1986; R e t t i g , Shrauger, Becker, G a l l a g h e r , and W i l t s e , 1986; Mazze, 1984). A major goal of p a t i e n t education, as s t a t e d by Hess e t a l . (1986), was to "enhance the a b i l i t y of p a t i e n t s to comply with t h e i r t h e r a p e u t i c regimens and to cope with the i m p l i c a t i o n s of c h r o n i c d i s e a s e and i t s impact on t h e i r l i v e s " (p.135). D i a b e t i c educators have a l s o s t r e s s e d the importance of t a k i n g i n t o account the p a t i e n t ' s own needs, a t t i t u d e s , and b e l i e f s when t e a c h i n g p a t i e n t s . Tools such as the Diabetes E d u c a t i o n a l P r o f i l e (Hess et a l . , 1986) have been developed to assess i n d i v i d u a l e d u c a t i o n a l needs of l e a r n e r s . The 17 development of the Diabetes E d u c a t i o n a l P r o f i l e i n v o l v e d the i d e n t i f i c a t i o n , by h e a l t h c a r e p r o v i d e r s , o£ p a t i e n t -c h a r a c t e r i s t i c s t h a t could lead to more e f f e c t i v e I n t e r v e n t i o n s i n p a t i e n t education- A f t e r t e s t i n g the t o o l on p a t i e n t s , areas i d e n t i f i e d as important f o r assessment of e d u c a t i o n a l needs i n c l u d e d " c o n t r o l problems", " p s y c h o s o c i a l impact", and " b a r r i e r s to compliance". These areas were used to form a comprehensive summary of p a t i e n t s ' a t t i t u d e s , b e l i e f s , behaviours, and knowledge i n r e l a t i o n to d i a b e t e s . H a r r i s and L i n n ( 1 9 8 7 ) have a l s o developed a Diabetes Health B e l i e f Scale i n an attempt to e x p l a i n compliance with p r e s c r i b e d medical regimens. Stud i e s have a l s o used Health Locus of C o n t r o l s c a l e s to measure a t t i t u d e s and b e l i e f s about i l l n e s s and treatment, and examined these f a c t o r s i n r e l a t i o n to the c o n t r o l of d i a b e t e s ( E d e l s t e l n and L i n n , 1 9 8 7 ) . These t o o l s have c o n t r i b u t e d Immensely to the Improvement of d i a b e t i c e d u c a t i o n . I t i s important to note, however, that these t o o l s measured p a t i e n t s ' a t t i t u d e s and b e l i e f s u s i n g s e l e c t e d and predetermined items. Moreover, these t o o l s accounted f o r p a t i e n t s ' a t t i t u d e s and b e l i e f s i n r e l a t i o n to compliance. The r o l e of these t o o l s , t h e r e f o r e , was to i d e n t i f y areas f o r h e a l t h p r o f e s s i o n a l s to work on i n order to improve p a t i e n t s ' compliance to medical regimens. Health p r o f e s s i o n a l s have been most concerned about p a t i e n t s ' compliance to medical regimens i n the treatment of d i s e a s e s . An emerging body of r e s e a r c h , however, suggests t h a t there i s a d i s c r e p a n c y between the p a t i e n t s ' and the h e a l t h p r o f e s s i o n a l s ' views of d i a b e t e s (Anderson, R.M., 1 9 8 5 ) . The p a t i e n t s ' views may d i f f e r , f o r example, because t h e i r 18 p r i o r i t i e s may not be the same as the h e a l t h p r o f e s s i o n a l s as they manage d i a b e t e s i n the context of t h e i r d a i l y l i v e s ( H a r r i s , 1987). Hodges and Parker (1987) i n d i c a t e d t h a t concerns f o r parents with d i a b e t i c c h i l d r e n are much broader than the medical regimen. From r e s u l t s of t h e i r study, they i l l u s t r a t e d t h a t a p a r t from parents' concerns to be compliant with treatment regimes, t h e i r concerns a l s o Included, f o r example, a gene r a l lack of confidence i n t e a c h e r s ' a b i l i t i e s to manage t h e i r d i a b e t i c c h i l d r e n . Parents a l s o expressed concern t h a t s p e c i a l allowances were made f o r t h e i r d i a b e t i c c h i l d ' s behaviour but not f o r a s i b l i n g ' s behaviour. P r e s e n t l y , an e x c i t i n g body of r e s e a r c h i s emerging that d e s c r i b e s people's experiences with d i a b e t e s and the meaning the i l l n e s s has f o r them (Sims, 1986; Sims, 1980). Although there i s a vast amount of l i t e r a t u r e w r i t t e n on d i a b e t e s , few s t u d i e s have concentrated on people's d e s c r i p t i o n s of t h e i r experiences of d i a b e t e s . These people's d e s c r i p t i o n s have much to o f f e r as they w i l l g ive us a comprehensive and h o l i s t i c view of what i t i s l i k e f o r c l i e n t s to l i v e with t h e i r i l l n e s s . S t u d i e s on the Chinese P o p u l a t i o n As mentioned above, i n working with c l i e n t s with d i a b e t e s , h e a l t h p r o f e s s i o n a l s need to understand how these c l i e n t s experience and manage t h e i r i l l n e s s . Health p r o f e s s i o n a l s face an even g r e a t e r c h a l l e n g e when the person with d i a b e t e s belongs to a d i f f e r e n t c u l t u r a l group. Kleinman et a l . (1978) acknowledged that i l l n e s s c o n s i s t s of the i n d i v i d u a l ' s p e r s o n a l , i n t e r p e r s o n a l , and c u l t u r a l r e a c t i o n s to d i s e a s e or d i s c o m f o r t . E s p e c i a l l y when d i a b e t e s r e q u i r e s t h a t c l i e n t s 19 shoulder tremendous r e s p o n s i b i l i t y f o r t h e i r own treatment and care, it- i s important for h e a l t h p r o f e s s i o n a l s to understand how s o c i a l and c u l t u r a l f a c t o r s i n f l u e n c e c l i e n t s ' i l l n e s s e x p e r i e n c e s . Canada i s made up of numerous c u l t u r a l groups. The Chinese p o p u l a t i o n r e p r e s e n t s a r i c h and d i v e r s e c u l t u r e . Due to the Chinese people's d i s t i n c t f a m i l y , s o c i a l , and c u l t u r a l backgrounds, t h e i r e x p l a n a t o r y models of i l l n e s s may be d i s s i m i l a r to t h a t of h e a l t h p r o f e s s i o n a l s i n the western h e a l t h care system, and warrant f u r t h e r e x p l o r a t i o n . For example, the Chinese may a s s i g n very d i f f e r e n t meanings to h e a l t h and i l l n e s s and have v a r i e d ways of seeking h e l p . In order f o r h e a l t h p r o f e s s i o n a l s to work c o l l a b o r a t i v e l y with these people, i t i s e s s e n t i a l f o r h e a l t h p r o f e s s i o n a l s to have a c l e a r understanding of t h i s p o p u l a t i o n ' s e x p l a n a t o r y models of i l l n e s s , t h e i r h e a l t h p r a c t i c e s and b e l i e f s , and systems of h e a l t h care they are accustomed t o u s i n g . We are faced with an i n c r e a s i n g number of Chinese who have become consumers i n the Western h e a l t h care system. Of the approximately 150,000 new immigrants who s e t t l e i n Canada a n n u a l l y ( S t a t i s t i c s Canada, 1984), an i n c r e a s i n g number are from A s i a n c o u n t r i e s . In the decade a f t e r the war, A s i a c o n t r i b u t e d l e s s than 3% of a l l immigrants. However, by 1978-1981, Asians accounted f o r 43.8% of a l l immigrants ( S t a t i s t i c s Canada, 1981). Among the l a r g e number of As i a n s , a m a j o r i t y are of Chinese descent. Due to the d i f f e r i n g v a l u e s , b e l i e f s , and p r a c t i c e s of e a s t e r n and western c u l t u r e s , h e a l t h p r o f e s s i o n a l s from the Western h e a l t h care system are I n c r e a s i n g l y aware of t h e i r r e s p o n s i b i l i t i e s t o pro v i d e 20 programs t h a t focus on the care of people from d i f f e r e n t e t h n i c groups. Much l i t e r a t u r e has been w r i t t e n on the Chinese. S t u d i e s have co n c e n t r a t e d on examining Chinese h e a l t h p r a c t i c e s w i t h i n a Chinese c o n t e x t , s t u d y i n g the Chinese, f o r example, i n China, Hong Kong, and Singapore (Kleinman, Kunstadter, Alexander, and Gale, 1975; Rosenthal, 1981; Koo, 1984; Ho, Lun, and Ng, 1984). Other s t u d i e s have focused on s t u d y i n g t r a d i t i o n a l Chinese medicine (Wang, 1983; L i u , 1980). Researchers have a l s o made comparative s t u d i e s of h e a l t h care i n China and other s o c i e t i e s (Kleinman et a l . , 1975). These s t u d i e s are i n v a l u a b l e i n h e l p i n g h e a l t h p r o f e s s i o n a l s understand Chinese concepts of h e a l t h and i l l n e s s and Chinese h e a l t h p r a c t i c e s . An area of r e s e a r c h s t i l l emerging i s the study of the Chinese w i t h i n the mainstream of the western h e a l t h care system. S e v e r a l r e s e a r c h e r s have made t h i s attempt (Gould-Martin and Ngin, 1981; Campbell and Chang, 1973; Yu and Wu, 1985; L i n , 1983). Research to explore how Chinese c l i e n t s with d i a b e t e s , w i t h i n the context of Canadian s o c i e t y , experience and manage t h e i r i l l n e s s i s l a c k i n g . Research i n t h i s area w i l l a s s i s t Western h e a l t h p r o f e s s i o n a l s to d i s c o v e r the p e r c e i v e d meaning d i a b e t e s holds f o r t h i s p o p u l a t i o n , and i t s i m p l i c a t i o n s f o r them. T h i s type of r e s e a r c h w i l l a l s o help h e a l t h p r o f e s s i o n a l s p l a n q u a l i t y care t h a t i s c u l t u r a l l y s e n s i t i v e and a c c e p t a b l e f o r t h i s p o p u l a t i o n . 21 Two Approaches to the C o n c e p t u a l i z a t i o n of the I l l n e s s Event The r e s e a r c h e r h a s e m p h a s i s e d why i t i s i m p o r t a n t to study d i a b e t e s and the Chinese p o p u l a t i o n . F u r t h e r e x p l a n a t i o n s w i l l be g i v e n as to why the r e s e a r c h e r chose to explore the meanings d i a b e t e s hold f o r i n d i v i d u a l s . Two g e n e r a l approaches authors use to c o n c e p t u a l i z e how c l i e n t s respond to the i l l n e s s event have been i d e n t i f i e d i n a review of the l i t e r a t u r e . One approach focused on the outcome of the i l l n e s s event. Other s t u d i e s attended to the meaning of l i v i n g with an i l l n e s s . S t udies t h a t Focus on O b j e c t i v e F a c t s About the I l l n e s s Event Although a voluminous amount has been w r i t t e n on d i a b e t e s and the study of c l i e n t s with d i a b e t e s , these s t u d i e s p a i d much more a t t e n t i o n to the outcome of the i l l n e s s than the meaning of the i l l n e s s event. The approach t h a t focused on the outcome of the i l l n e s s event c o n c e n t r a t e d on accumulating o b j e c t i v e data about the d i s e a s e . Data were c o l l e c t e d i n order to t r e a t the d i s e a s e , or d e v i s e ways so c l i e n t s might e f f e c t i v e l y c o n t r o l the d i s e a s e . O b j e c t i v e data might i n c l u d e blood t e s t r e s u l t s , u r i n e t e s t r e s u l t s , and i n s u l i n dosages. Research of t h i s nature has centered on t o p i c s l i k e the pathophysiology of d i a b e t e s , the epidemiology of d i a b e t e s , and c l i n i c a l methods. L i t t l e emphasis was placed on people's s u b j e c t i v e experiences of the i l l n e s s event. Researchers who have focused on the outcome of the i l l n e s s have a l s o emphasized that c l i e n t s should s t r i c t l y comply with p r e s c r i b e d medical regimens ( E t z w i l e r , 1980). Those who d i d not comply have been l a b e l l e d as "noncompliant d i a b e t i c s " ( C a r y l , and Popkin, 1986), " d e f a u l t e r s " (Hammersly, Holland, 22 Walford, and Thorn, 1985), or "nonadherent p a t i e n t s " (Ary, Toobert, Wilson, and Glasgow, 1986). The r e s e a r c h e r s ' main i n t e r e s t was to help c l i e n t s a c q u i r e h e a l t h e d u c a t i o n , and adhere to what had been p r e s c r i b e d . C l i e n t s ' input might not have been asked f o r . L i t e r a t u r e p e r t a i n i n g to d i a b e t e s has a l s o placed s t r o n g emphasis on s e l f - c a r e and self-management. However, some h e a l t h p r o f e s s i o n a l s s t r e s s e d t h a t c l i e n t s s u c c e s s f u l l y a t t a i n s e l f - c a r e by a c q u i r i n g h e a l t h education and adhering to p r e s c r i b e d medical regimens. T h i s may be r e f l e c t e d i n one author's l i s t of e n t r y c r i t e r i a f o r a d i a b e t i c e d u c a t i o n program to enhance c l i e n t management. "Among the c r i t e r i a f o r e n t r y should be the p a t i e n t ' s understanding of the educator's purpose and the p r o v i d e r ' s support f o r the e d u c a t i o n i n t e r v e n t i o n " (Mazze, 1986, p.128). The assumption u n d e r l y i n g s t u d i e s of t h i s nature i s t h a t adherence to the p r e s c r i b e d regimens guarantees t h a t the outcome of i l l n e s s i s f a v o u r a b l e . The h e a l t h p r o f e s s i o n a l ' s r o l e , t h e r e f o r e , i s to d e v i s e ways to help c l i e n t s comply to p r e s c r i b e d medical regimens so that the i l l n e s s i s kept under c o n t r o l . With the movement towards s e l f -c a re, s t u d i e s on other i l l n e s s e s have i d e n t i f i e d ways h e a l t h p r o f e s s i o n a l s may help to i n c r e a s e c l i e n t s ' involvement i n t h e i r own care (Weiss, 1986; K a p p e l l , 1986). However, these s t u d i e s have not attempted to e x p l o r e the process c l i e n t s go through i n the management of t h e i r own i l l n e s s . With the r e c e n t emphasis on a h o l i s t i c view of h e a l t h c a r e , r e s e a r c h e r s who have focused on the outcome of the I l l n e s s event have a l s o acknowledged the r e l a t i o n s h i p s among p s y c h o s o c i a l v a r i a b l e s and t h e i r e f f e c t s on b i o l o g i c outcomes. 23 For example, i n Peyrot and McMurry's study (1985), they found a s t r o n g r e l a t i o n s h i p bet-ween p s y c h o s o c i a l adjustment and d i a b e t i c c o n t r o l i n i n s u l i n - t r e a t e d a d u l t s . They suggested that adjustment a f f e c t s c o n t r o l through both b e h a v i o u r a l and p s y c h o p h y s i o l o g i c a l mechanisms. Other s t u d i e s e x p l o r e d the r e l a t i o n s h i p between h e a l t h b e l i e f s and p s y c h o l o g i c a l v a r i a b l e s i n p a t i e n t s with d i a b e t e s (Becker, Maiman, K i r s c h t , Haefner, Drachman, and T a y l o r , 1979). These s t u d i e s are v a l u a b l e as they i d e n t i f i e d f o r h e a l t h p r o f e s s i o n a l s p a r t i c u l a r p s y c h o s o c i a l f a c t o r s t h a t Influence the outcome of the i l l n e s s . In these s t u d i e s , however, s u b j e c t i v e data were o b j e c t i v e l y measured with the a i d of predesigned t o o l s or s c a l e s . Hence, although s i g n i f i c a n t p s y c h o s o c i a l v a r i a b l e s t h a t i n f l u e n c e the management and treatment of i l l n e s s were i d e n t i f i e d , these s t u d i e s provided a l i m i t e d p i c t u r e of how a l l the p s y c h o s o c i a l v a r i a b l e s were i n t e r r e l a t e d and a f f e c t e d people's l i v e s . In summary, with the r e c e n t emphasis on a h o l i s t i c view of h e a l t h c a r e , s t u d i e s have been conducted to e l u c i d a t e the r e l a t i o n s h i p s among p s y c h o s o c i a l v a r i a b l e s and t h e i r e f f e c t s on treatment outcomes (Peyrot and McMurry, 1985; Daschner, 1986). Other s t u d i e s e x p l o r e d the r e l a t i o n s h i p between h e a l t h b e l i e f s and p s y c h o l o g i c a l v a r i a b l e s i n p a t i e n t s with d i a b e t e s (Becker et a l . , 1979). Aspects of c l i e n t s ' p e r c e p t i o n s were, however, v a l i d a t e d through o b j e c t i v e measures u s i n g predesigned t o o l s or s c a l e s . 24 Stu d i e s that Attend to the Meaning of L i v i n g with an I l l n e s s In c o n t r a s t to the r e s e a r c h which examined o b j e c t i v e f a c t s about the i l l n e s s experience, other r e s e a r c h has attended to the meaning of l i v i n g with an i l l n e s s . S t u d i e s of t h i s nature attempted to o b t a i n a f u l l account of people's experiences as re s e a r c h e r s e x p l o r e d the meaning the i l l n e s s had f o r these i n d i v i d u a l s . These accounts were e l i c i t e d by r e s e a r c h e r s from the most o r i g i n a l sources - the c l i e n t s themselves. Although there i s a s c a r c i t y of s t u d i e s on d i a b e t e s that explore the meaning of l i v i n g with the i l l n e s s , r e s e a r c h which has examined people's experiences of i l l n e s s has made immense c o n t r i b u t i o n s to understanding and i n s i g h t . Norman Cousins (1976), who has giv e n e x t e n s i v e accounts of hl3 experience with a c o l l a g e n i l l n e s s , has provided tremendous I n s i g h t to h e a l t h p r o f e s s i o n a l s . Few p u b l i c a t i o n s have had as t h e i r focus the e x p l o r a t i o n of the i l l n e s s experience, from the i n d i v i d u a l ' s p e r s p e c t i v e . The work of Dorothea Sims (1986, 1980), a d i a b e t i c h e a l t h educator, as w e l l as a d i a b e t i c f o r the past t h i r t y y ears, i s an e x c e p t i o n . She has shared her s e l f - p e r c e p t i o n s of d i a b e t e s i n s e v e r a l p u b l i c a t i o n s . In one account, Sims (1986) d e s c r i b e d the gap between the h e a l t h p r o f e s s i o n a l s ' p e r c e p t i o n s and her own expe r i e n c e . To the h e a l t h p r o f e s s i o n a l , many of my neuropathies are minor because they are not l i f e - t h r e a t e n i n g . For me, however, i t i s not a minor problem to be caught with u n c o n t r o l l a b l e d i a r r h e a i n an overcrowded a i r p o r t . An impaired sense of balance i s l i f e - t h r e a t e n i n g on a s a i l b o a t i n rough weather or i n a s l i p p e r y bathtub, (p.123) 25 S t u d i e s that attend to the meaning of l i v i n g with an i l l n e s s a l s o provide h e a l t h p r o f e s s i o n a l s with a renewed look at how people manage t h e i r i l l n e s s w i t h i n the context of t h e i r d a i l y l i v e s . Again, as r e s e a r c h on t h i s area of d i a b e t e s i s s c a r c e , other s t u d i e s are used to make t h i s p o i n t . Conrad (1985) employed a p a t i e n t - c e n t e r e d approach t o st u d y i n g compliance f o r people with e p i l e p s y . He argued that "noncompliance", l a b e l l e d by h e a l t h p r o f e s s i o n a l s as a l t e r i n g p r e s c r i b e d medical regimens, a c t u a l l y represented p a t i e n t s ' a c t i v e attempt to r e g u l a t e t h e i r medications to a s s e r t some degree of c o n t r o l over t h e i r h e a l t h c o n d i t i o n s . Douglas and Druss (1987), attempted to understand the nature of d e n i a l of i l l n e s s by examining two p a t i e n t s with s e r i o u s and d i s f i g u r i n g p h y s i c a l d i s o r d e r s who postponed medical treatment. They i l l u s t r a t e d how v a r i o u s s o c i a l and e x p e r i e n t i a l determinants i n f l u e n c e d the p a t i e n t s ' r e a c t i o n s to i l l n e s s . In f a c t , the i l l n e s s served important o r g a n i z i n g f u n c t i o n s f o r these p a t i e n t s . I t s h e l t e r e d them from the e x i g e n c i e s of d a i l y l i f e , and i t allowed them to r e g a i n c o n t r o l over t h e i r own c a r e . Anderson and Chung (1982b) s t u d i e d f a m i l i e s with c h r o n i c a l l y i l l c h i l d r e n from the f a m i l i e s ' p e r s p e c t i v e s . By st u d y i n g f a m i l i e s ' own p e r c e p t i o n s , they demonstrated how f a m i l i e s c o n s t r u c t the i l l n e s s experience with t h e i r c h i l d r e n i n the context of everyday s o c i a l i n t e r a c t i o n . They pointed out t h a t parents' management of the r o u t i n e s of everyday l i f e must be understood w i t h i n the meaning context of the s i c k n e s s f o r t h a t p a r t i c u l a r f a m i l y . They proposed that h e a l t h p r o f e s s i o n a l s should attempt to ga i n an understanding of the 26 parents* e x p l a n a t o r y models of s i c k n e s s and the e f f e c t that the s i c k n e s s has on t h e i r l i v e s . Only by t a k i n g i n t o account how c l i e n t s view t h e i r s i c k n e s s w i l l p r o f e s s i o n a l s be able to n e g o t i a t e s t r a t e g i e s t h a t are a p p r o p r i a t e to the c l i e n t s ' s i t u a t i o n . In another study, Anderson and Chung (1982a) i l l u s t r a t e d how c u l t u r a l f a c t o r s i n f l u e n c e d the ways i n which f a m i l i e s manage treatments i n the context of everyday l i f e . From t h e i r i n t e r v i e w s with subgroups of Chinese and white f a m i l i e s , they noted t h a t f o r Chinese f a m i l i e s , n o r m a l i z a t i o n was not the i s s u e , nor d i d the treatments p r e s c r i b e d by h e a l t h p r o f e s s i o n a l s take top p r i o r i t y . P r o t e c t i n g the c h i l d and keeping t h e i r c h i l d r e n content were more important. In c o n t r a s t , the white f a m i l i e s i n t e r v i e w e d t r e a t e d t h e i r c h i l d r e n as "normal" and minimized the d i f f e r e n c e s between t h e i r s i c k c h i l d r e n and other c h i l d r e n . The authors p o i n t e d to the need for p r a c t i t i o n e r s to take i n t o account a f a m i l y ' s p r i o r i t i e s and understanding of the s i t u a t i o n i f c u l t u r a l l y a c c e p t a b l e care i s to be p r o v i d e d . They emphasized the Important r o l e n e g o t i a t i o n p l a y s i n p r o v i d i n g c a r e . N e g o t i a t i o n , as they s t a t e d , can o n l y take place i f the nurse understands the p a t i e n t ' s p e r s p e c t i v e . S t u d i e s t h a t focus on the process c l i e n t s go through i n managing d i a b e t e s are s c a r c e . More r e s e a r c h i n t h i s area i s necessary. S t u d i e s t h a t e l i c i t c l i e n t s ' p e r s p e c t i v e s on how they manage d i a b e t e s w i l l provide h e a l t h p r o f e s s i o n a l s with an i n s i d e "view" of how c l i e n t s with d i a b e t e s make h e a l t h d e c i s i o n s , and what c l i e n t s go through i n making these d e c i s i o n s . Moreover, s t u d i e s of Chinese informants with 27 di a b e t e s w i l l provide v a l u a b l e i n f o r m a t i o n on the ways i n which c u l t u r a l f a c t o r s i n f l u e n c e how Chinese c l i e n t s experience and manage t h e i r i l l n e s s . Summary In t h i s chapter, background l i t e r a t u r e has been reviewed to e x p l a i n why i t was important to explore how Chinese informants experience and manage d i a b e t e s . I n d i v i d u a l s with d i a b e t e s have been s t u d i e d as d i a b e t e s i s one of the c h r o n i c i l l n e s s e s t h a t r e q u i r e s p a t i e n t s to manage t h e i r d a i l y care on an ongoing b a s i s . Chinese informants have been s t u d i e d because they r e p r e s e n t a r i c h and d i v e r s e c u l t u r e and may possess very d i f f e r e n t e x p l a n a t o r y models than Western h e a l t h p r o f e s s i o n a l s . In order to provide a p p r o p r i a t e and c u l t u r a l l y a c c e p t a b l e care to t h i s c u l t u r a l group, h e a l t h p r o f e s s i o n a l s need to l e a r n how Chinese informants with d i a b e t e s d e f i n e h e a l t h and i l l n e s s , and what meanings they a s s i g n to t h e i r i l l n e s s e x p e r i e n c e s . Two gen e r a l approaches to c o n c e p t u a l i z i n g the i l l n e s s event have a l s o been i d e n t i f i e d . There are s t u d i e s t h a t focus on the outcome of the i l l n e s s while others a t t e n d to the meaning of the i l l n e s s event f o r i n d i v i d u a l s with d i a b e t e s . S t u d i e s t h a t support each of the approaches have c o n t r i b u t e d t o great advancements i n the treatment and management of d i a b e t e s . Instead of t a k i n g an o b j e c t i v e approach to viewing i l l n e s s , the r e s e a r c h e r chose to e l i c i t i nformants' s u b j e c t i v e accounts of the meaning of t h e i r i l l n e s s and the process they went through i n the management of t h e i r i l l n e s s . T h i s i s because the r e s e a r c h e r b e l i e v e s that i n d i v i d u a l s o f f e r a r i c h source of data by s h a r i n g t h e i r e xperiences of l i v i n g with d i a b e t e s i n the context of t h e i r 28 d a i l y l i v e s . Moreover, on l y by understanding people's experience of i l l n e s s and the process of management of t h e i r i l l n e s s w i l l h e a l t h p r o f e s s i o n a l s be able to understand what i t i s l i k e f o r them to l i v e with d i a b e t e s and i n t u r n n e g o t i a t e care that i s a c c e p t a b l e to them. In the f o l l o w i n g chapter, the re s e a r c h e r w i l l d e s c r i b e the methodology used to explore how informants with d i a b e t e s experienced and managed t h e i r i l l n e s s . 29 Chapter 3 METHODOLOGY The phenomenological p e r s p e c t i v e of q u a l i t a t i v e r e s e a r c h guided the methodological approach to the study. The study aimed to d e s c r i b e and e x p l a i n human experience as i t i s l i v e d i n the complexity of i t s c o n t e x t . The f o l l o w i n g d i s c u s s i o n o u t l i n e s the methods t h a t were used f o r c o l l e c t i o n and a n a l y s i s of data f o r t h i s study. subject s e l e c t i o n The p r i n c i p l e of t h e o r e t i c a l sampling, as d e s c r i b e d by F i e l d and Morse (1985), guided the s e l e c t i o n of the sample i n t h i s study. 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 to give data t h a t are r e p r e s e n t a t i v e and c o n t r i b u t e to understanding and i n s i g h t . 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 to maximize o p p o r t u n i t i e s to 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 to f u r t h e r e x p l o r e , co 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 (Morse, 1986). The sample p o p u l a t i o n was obtained by r e f e r r a l from the Home Care department of a h e a l t h department i n a western Canadian c i t y . C r i t e r i a f o r S e l e c t i o n The c r i t e r i a used i n s e l e c t i n g informants f o r t h i s study were t h a t the informant:-1. was aged over f o r t y . 2. had been diagnosed with l a t e onset d i a b e t e s (Type II) f o r more than s i x months. 30 3. was undergoing i n s u l i n treatment f o r d i a b e t e s a t home. 4. i s a f i r s t g e n e r a t i o n Chinese i n Canada. 5. had the a b i l i t y to communicate i n Cantonese/ Mandarin/ and/or E n g l i s h . 6. l i v e d w i t h i n c l o s e p r o x i m i t y of Greater Vancouver. R a t i o n a l e The r a t i o n a l e given f o r s e l e c t i n g informants who were diagnosed with l a t e onset d i a b e t e s (Type II) but not both Type I and I I , or Type I alone, was because the onset, treatment, and impact on d a i l y l i f e of both types of d i a b e t e s may d i f f e r . Informants with l a t e onset d i a b e t e s (Type II) were s e l e c t e d because they may experience adjustment d i f f i c u l t i e s as they face sudden, yet compulsory changes i n t h e i r l i f e s t y l e s at a l a t e r stage i n t h e i r l i v e s . S t u d i e s on t h i s group would provide e s p e c i a l l y v a l u a b l e i n f o r m a t i o n on how c l i e n t s manage t h e i r i l l n e s s and adapt changes i n t h e i r l i f e s t y l e s . Moreover, past r e s e a r c h has i n d i c a t e d a low i n c i d e n c e r a t e of Type I d i a b e t e s i n the Chinese p o p u l a t i o n ( J a r r e t t , 1982). Informants with Type II d i a b e t e s f o r more than s i x months were chosen as the r e s e a r c h e r was l o o k i n g f o r informants who were "exp e r t s " i n t h e i r e x p e r i e n c e . I n d i v i d u a l s aged over f o r t y were s e l e c t e d because the onset of d i a b e t e s i s g e n e r a l l y found a f t e r age f o r t y years ( H a r r i s , 1982). Recruitment of Informants Recruitment of Informants meeting the s t a t e d c r i t e r i a took p l a c e v i a the Home Care d i v i s i o n of a h e a l t h department i n a western Canadian c i t y . The r e s e a r c h e r submitted c o p i e s of her p r o p o s a l accompanied by a l e t t e r of i n t r o d u c t i o n to the r e s e a r c h c o n s u l t a n t of the h e a l t h department to seek e n t r y to 31 the agency. Upon agency a p p r o v a l , the re s e a r c h e r arranged to meet with Home Care s t a f f from three h e a l t h u n i t s w i t h i n the c i t y and int r o d u c e d the study to them. F o l l o w i n g the meeting, as Home Care s t a f f encountered i n d i v i d u a l s who met the c r i t e r i a f o r the study, they mentioned the study t o them, one n u t r i t i o n i s t b e longing t o the Home Care department was e s p e c i a l l y h e l p f u l . She had rec o r d s of a l l d i a b e t i c c l i e n t s she had worked with i n the past two y e a r s . She compiled a - l i s t of these people who f i t the c r i t e r i a f o r the study and contacted them t o e x p l a i n the study. I n d i v i d u a l s who were i n t e r e s t e d i n p a r t i c i p a t i n g i n the study were gi v e n an i n f o r m a t i o n and consent form (see Appendix A). People who had quest i o n s about the study were encouraged to c a l l the r e s e a r c h e r . Upon the informants' w r i t t e n consent, the r e s e a r c h e r arranged f o r an i n i t i a l v i s i t i n t h e i r homes. T h e o r e t i c a l sampling determined the sample s i z e f o r the study. C h a r a c t e r i s t i c s of informants Interviews were conducted with nine Chinese informants (seven females and two males) who were diagnosed with l a t e onset d i a b e t e s and were undergoing i n s u l i n treatment a t home. Informants' ages ranged from s i x t y - n i n e to n i n e t y years o l d . A l l informants spoke Chinese d u r i n g the Int e r v i e w s . Three of them spoke the To i s a n d i a l e c t of the Chinese language, f i v e spoke the Cantonese d i a l e c t , while one spoke the Sekkei d i a l e c t . Two c l i e n t s spoke f l u e n t Cantonese and E n g l i s h , and one of them used a few words of E n g l i s h d u r i n g the i n t e r v i e w s to express h i m s e l f . A l l Informants are f i r s t g e n e r a t i o n immigrants i n Canada. E i g h t people were born i n China while one was born i n I n d i a . 32 P r i o r to coming to Canada, four informants r e s i d e d i n China, t h r e e i n Hong K o n g , one i n V i e t n a m , a n d one i n I n d i a . F o u r people have been i n Canada f o r l e s s than ten y e a r s , three have been i n Canada f o r ten to twenty y e a r s , and the other two have been i n Canada f o r more than t h i r t y y e a r s . A l l informants r e s i d e d i n Vancouver a t the time of the i n t e r v i e w s . Seven of the informants l i v e d i n government-s u b s i d i z e d housing u n i t s then. Of the nine informants, s i x l i v e d a l o n e . Two Informants l i v e d with t h e i r spouses and c h i l d r e n while one l i v e d with a son. seven of the Informants were widows or widowers. Monthly income f o r the informants ranged from $400 t o $720 per month. A l l informants were not working a t the time of the i n t e r v i e w s except f o r a n i n e t y - y e a r o l d person who v o l u n t e e r e d as a c o u n s e l l o r f o r s e n i o r s . Three informants have had t h e i r d i a b e t e s diagnosed f o r l e s s than ten years while f i v e of them have had i t diagnosed f o r ten t o f i f t e e n y e a r s . One informant, whose f a t h e r a l s o had d i a b e t e s , had been diagnosed with d i a b e t e s f o r f o r t y - o n e y e a r s . With regards to h e a l t h care s e r v i c e s u t i l i z e d , a l l informants I d e n t i f i e d t h e i r f a m i l y doctor as one main source of h e l p . Seven of the nine informants were r e c e i v i n g r e g u l a r help from community h e a l t h nurses and homemakers. S i x of the nine people sought h e l p from both Chinese f o l k d o c t o r s and Western p r o f e s s i o n a l d o c t o r s , while the other three people sought help o n l y from t h e i r Western p r o f e s s i o n a l d o c t o r s . As to r e l i g i o u s a f f i l i a t i o n , f i v e informants belonged to the Buddhist f a i t h , one belonged t o the C h r i s t i a n f a i t h , and another to Confuscianism. Two Informants claimed t h a t they had no 33 r e l i g i o u s a f f i l i a t i o n . D a t a C o l l e c t i o n a n d A n a l y s i s As d a t a c o l l e c t i o n a n d a n a l y s i s r u n c o n c u r r e n t l y i n q u a l i t a t i v e r e s e a r c h ( L o f l a n d , 1 9 7 1 ) , t h e r e was a t e m p o r a l o v e r l a p p i n g o f b o t h p r o c e s s e s t h r o u g h o u t t h e s t u d y . D a t a were c o l l e c t e d m o s t l y i n a s e r i e s o f two t o t h r e e i n t e r v i e w s i n t h e i n f o r m a n t s ' homes. T h r e e i n t e r v i e w s were c o n d u c t e d w i t h f i v e i n f o r m a n t s a n d two i n t e r v i e w s w i t h two i n f o r m a n t s . O n l y one I n t e r v i e w was c o n d u c t e d w i t h e a c h o f two i n f o r m a n t s , one i n f o r m a n t r e q u e s t e d t o h a v e no more I n t e r v i e w s a f t e r t h e f i r s t v i s i t a s s h e f e l t t h e r e was no more i n f o r m a t i o n t o a d d t o what was a l r e a d y s a i d . A n o t h e r i n f o r m a n t was u n a b l e t o p a r t i c i p a t e i n t h e s t u d y a f t e r t h e f i r s t i n t e r v i e w due t o t i m e c o n s t r a i n t s . Open i n t e r v i e w i n g t e c h n i q u e was e m p l o y e d , w h e r e b y d a t a were o b t a i n e d b y a s e r i e s o f u n s t r u c t u r e d i n t e r v i e w s . U s i n g K l e i n m a n * s c u l t u r a l s y s t e m m o d e l a s a f r a m e w o r k t o g u i d e t h e s t u d y , s a m p l e t r i g g e r q u e s t i o n s were f o r m u l a t e d ( s e e A p p e n d i x B ) . T h e s e q u e s t i o n s w e re u s e d a s t o o l s t o e l i c i t i n f o r m a n t s * e x p l a n a t o r y m o d e l s , w h i c h d i r e c t e d e x a m i n a t i o n o f how i n f o r m a n t s e x p e r i e n c e d a n d managed d i a b e t e s . As t h e s e q u e s t i o n s were u s e d p r i m a r i l y t o i n i t i a t e i n t e r a c t i o n s w i t h i n f o r m a n t s , n o t a l l q u e s t i o n s w e re n e c e s s a r i l y a s k e d . The d e p t h a n d s c o p e o f t h e i n t e r v i e w s were g u i d e d by t h e i n f o r m a n t s ' r e s p o n s e s . The r e s e a r c h e r was t h e p r i m a r y I n s t r u m e n t u s e d f o r d a t a c o l l e c t i o n . I n f o r m a n t s ' a c c o u n t s were c o n s t r u c t e d b a s e d on t h e i n t e r a c t i o n s b e t w e e n t h e i n f o r m a n t s a n d t h e r e s e a r c h e r . The i n t e r a c t i o n s i n t h i s s t u d y t o o k p l a c e a s t h e r e s e a r c h e r I n i t i a t e d q u e s t i o n s ( s e e A p p e n d i x B) t o e x p l o r e how i n f o r m a n t s e x p e r i e n c e d a nd managed d i a b e t e s . The 34 i n f o r m a n t s ' r e s p o n s e s t r i g g e r e d more q u e s t i o n s a n d r e s p o n s e s b y t h e r e s e a r c h e r . T h u s , a n i n t e r p l a y o f q u e s t - i o n s a n d r e s p o n s e s t o o k p l a c e b e t w e e n t h e i n f o r m a n t s a n d t h e r e s e a r c h e r . T h i s i n t e r p l a y may be l i k e n e d t o a d a n c e b e t w e e n two p a r t n e r s , where t h e r e s e a r c h e r r e s p o n d e d t o t h e i n f o r m a n t s ' e a c h movement a nd s t e p . The r e s e a r c h e r c o n t i n u e d t o a s k i n - d e p t h q u e s t i o n s , l e d b y t h e i n f o r m a n t s ' r e s p o n s e s . I n t h e a t t e m p t t o " g e t c l o s e t o t h e d a t a " , i t was e s p e c i a l l y c r u c i a l d u r i n g t h e r e s e a r c h p r o c e s s f o r t h e r e s e a r c h e r t o be e x t r e m e l y a t t e n t i v e t o t h e i n f o r m a n t s ' r e s p o n s e s ( F i l s t e a d , 1 9 7 0 ) . The i n t e r v i e w s were c o n d u c t e d i n C h i n e s e a s t h i s was t h e i n f o r m a n t s ' p r e f e r r e d l a n g u a g e . A l l i n t e r v i e w s w e re t a p e -r e c o r d e d . F o l l o w i n g t h e i n t e r v i e w s , t h e r e s e a r c h e r t r a n s l a t e d t h e t a p e d i n t e r v i e w s t o E n g l i s h a n d had t h e t a p e s t r a n s c r i b e d . A l l t a p e d m a t e r i a l s were t h e n c o d e d s o t h a t i n f o r m a n t s ' names d i d n o t a p p e a r on a n y t r a n s c r i p t s . T h i s was s i m i l a r t o t h e method u s e d b y A n d e r s o n a n d Chung ( 1 9 8 2 a ) . The d a t a c o n s i s t e d o f t h e c o n t e n t o f a t o t a l o f t w e n t y - o n e i n t e r v i e w s w i t h n i n e i n f o r m a n t s . The i n t e r v i e w s t o o k p l a c e o v e r a p e r i o d o f f o u r m o n t h s . D u r i n g t h e i n i t i a l I n t e r v i e w s , i n f o r m a n t s were t o l d t h a t t h e i n t e r v i e w s w o u l d l a s t a p p r o x i m a t e l y one h o u r , a l t h o u g h t h e y were n o t t o c o n s i d e r t h a t a t i m e l i m i t . M o s t o f t h e i n t e r v i e w s l a s t e d s i x t y t o n i n e t y m i n u t e s , a l t h o u g h c o n t a c t t i m e w i t h i n f o r m a n t s was o f t e n s u b s t a n t i a l l y l o n g e r . O f t e n a f t e r t h e i n t e r v i e w s , t h e r e s e a r c h e r s p e n t t i m e w i t h i n f o r m a n t s t o a t t e n d t o q u e s t i o n s t h e y w a n t e d a n s w e r e d . On a f e w o c c a s i o n s , i n f o r m a n t s v o l u n t e e r e d t o show t h e r e s e a r c h e r p h o t o g r a p h s o f t h e i r f a m i l i e s . 35 I n t h e I n i t i a l i n t e r v i e w s , t h e r e s e a r c h e r a t t e m p t e d t o e l i c i t i n f o r m a n t s ' d e s c r i p t i o n s o f how t h e y e x p e r i e n c e d a n d managed t h e i r i l l n e s s e s . S u b s e q u e n t i n t e r v i e w s were u s e d f o r c l a r i f i c a t i o n o f m e a n i n g o r c o n c e p t s , e x p a n s i o n o f t h e d e s c r i p t i o n s , a n d f o r v a l i d a t i o n p u r p o s e s . V a l i d a t i o n w i t h i n f o r m a n t s was done t h r o u g h o u t t h e i n t e r v i e w s i n o r d e r t o c a p t u r e t h e e s s e n c e o f what i t meant f o r c l i e n t s t o l i v e w i t h d i a b e t e s . F i e l d n o t e s were a l s o w r i t t e n b y t h e r e s e a r c h e r t o s u p p l e m e n t d a t a c o l l e c t e d f r o m t a p e d m a t e r i a l s . T h e s e n o t e s d e s c r i b e d t h e i n t e r a c t i o n , t h e s e t t i n g a nd c o n t e x t a s t h e i n t e r v i e w s t o o k p l a c e ( F i e l d a n d M o r s e , 1 9 8 5 ) . On s e v e r a l o c c a s i o n s , i n f o r m a n t s had r e s u m e d t a l k i n g a f t e r t h e i n t e r v i e w s were t e r m i n a t e d and t h e t a p e - r e c o r d e r had s t o p p e d . A t t i m e s when i t was d i f f i c u l t t o b e g i n t a p e - r e c o r d i n g a g a i n , t h e r e s e a r c h e r t o o k n o t e s a f t e r t h e i n t e r v i e w s I n a n a t t e m p t t o e n r i c h t h e d a t a . A b r i e f d e m o g r a p h i c s h e e t was a l s o u s e d t o o b t a i n i n f o r m a t i o n , i n c l u d i n g t h e I n f o r m a n t s ' a g e , s e x , and p l a c e o f b i r t h ( s e e A p p e n d i x C ) . As m e n t i o n e d a b o v e , d a t a c o l l e c t i o n a n d a n a l y s i s o c c u r r e d s i m u l t a n e o u s l y t h r o u g h o u t . G i o r g i ' s p h e n o m e n o l o g i c a l method ( 1 9 7 5 ) was u s e d t o g u i d e d a t a a n a l y s i s . As t r a n s c r i p t s were o b t a i n e d , t h e r e s e a r c h e r e x a m i n e d t h e e n t i r e d e s c r i p t i o n o f t h e e x p e r i e n c e t o g e t a s e n s e o f t h e w h o l e . T h i s was done i n o r d e r t o g e t some s e n s e o f t h e e x p e r i e n c e o f i n f o r m a n t s and how t h e y managed d i a b e t e s a s a w h o l e . She t h e n r e a d t h e d e s c r i p t i o n more s l o w l y , and d e l i n e a t e d e a c h t i m e t h a t a t r a n s i t i o n i n m e a n i n g was p e r c e i v e d . The a t t i t u d e w i t h w h i c h t h i s was done was one o f maximum o p e n n e s s . A f t e r w a r d s , e n t i r e t r a n s c r i p t s 36 were c o d e d a c c o r d i n g t o m e a n i n g s d e l i n e a t e d . A f t e r t h e n a t u r a l u n i t s h a d b e e n d e l i n e a t e d , t h e r e s e a r c h e r t r i e d t o s t a t e a s s i m p l y a s p o s s i b l e t h e theme t h a t d o m i n a t e d t h e n a t u r a l u n i t s w i t h i n t h e same a t t i t u d e t h a t d e f i n e d t h e u n i t s . A l a s t s t e p t o o k p l a c e a s t h e r e s e a r c h e r s y n t h e s i z e d a n d i n t e g r a t e d t h e e s s e n t i a l t hemes i n t o t h e f o r m o f a f i n a l a n a l y t i c f r a m e w o r k . T h i s f r a m e w o r k was c r u c i a l t o o r g a n i z i n g d a t a i n a manner t h a t b e s t r e p r e s e n t e d how c l i e n t s e x p e r i e n c e d a n d managed t h e i r d i a b e t e s . E t h i c s a n d Human R i g h t s The r i g h t s o f i n f o r m a n t s were p r o t e c t e d i n t h e f o l l o w i n g manner. 1. W r i t t e n a p p r o v a l was o b t a i n e d f r o m 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 B e h a v i o u r a l S c i e n c e s S c r e e n i n g C o m m i t t e e f o r R e s e a r c h a n d O t h e r S t u d i e s I n v o l v i n g Human S u b j e c t s t o c o n d u c t t h e s t u d y . 2. W r i t t e n a p p r o v a l was o b t a i n e d f r o m the-Home C a r e d i v i s i o n o f a h e a l t h d e p a r t m e n t I n a w e s t e r n C a n a d i a n c i t y t o r e c r u i t i n f o r m a n t s f o r i n t e r v i e w s . 3. I n f o r m e d , w r i t t e n c o n s e n t s s i g n e d b y i n f o r m a n t s were o b t a i n e d b e f o r e a n y i n t e r v i e w s were c o n d u c t e d . 4. I n f o r m a n t s were g i v e n i n f o r m a t i o n on t h e p u r p o s e o f t h e s t u d y , t h e r o l e o f i n f o r m a n t s , t h e t y p e o f d a t a t o be c o l l e c t e d , a n d how d a t a w o u l d be h a n d l e d . 5. I n f o r m a n t s were f r e e t o w i t h d r a w f r o m t h e s t u d y a t a n y t i m e , t o r e f u s e t o a n s w e r a n y q u e s t i o n s w i t h o u t p e n a l t y , t o d e l e t e a n y i n f o r m a t i o n on t a p e d m a t e r i a l s , a n d / o r t o s t o p t h e i n t e r v i e w s . 6. I n f o r m a n t s were a d v i s e d t h a t n o n - p a r t i c i p a t i o n i n t h e 37 s t u d y w o u l d n o t j e o p a r d i z e i n a n y way t h e t r e a t m e n t o r c a r e t h e y r e c e i v e . 7. I n f o r m a n t s were t o l d t h a t a l l t a p e d m a t e r i a l s a n d t r a n s c r i p t s w o u l d be c o n f i d e n t i a l , a n d t h a t names w o u l d n o t be i d e n t i f i e d i n a n y w r i t t e n m a t e r i a l . 8. I n f o r m a n t s who i n d i c a t e d a n i n t e r e s t i n t h e r e s u l t s o f t h e s t u d y w o u l d be c o n t a c t e d a f t e r a f i n a l r e p o r t i s w r i t t e n . Summary The m e t h o d o l o g y f o r t h i s s t u d y was b a s e d on t h e p h e n o m e n o l o g i c a l method o f q u a l i t a t i v e r e s e a r c h . I n f o r m a n t s were s e l e c t e d a s t h e y were r e g a r d e d a s e x p e r t s i n s h a r i n g t h e i r e x p e r i e n c e s w i t h t h e i r own i l l n e s s . I n t o t a l , n i n e i n f o r m a n t s p a r t i c i p a t e d i n t h e s t u d y . D a t a c o l l e c t i o n a n d a n a l y s i s t o o k p l a c e c o n c u r r e n t l y t h r o u g h o u t t h e s t u d y . D a t a c o l l e c t i o n d e p e n d e d on d a t a i n f o r m a n t s s h a r e d w i t h t h e r e s e a r c h e r . D a t a a n a l y s i s , on t h e o t h e r h a n d , d e p e n d e d on how t h e r e s e a r c h e r i n t e r p r e t e d d a t a . I n e s s e n c e , b o t h t h e i n f o r m a n t s a n d t h e r e s e a r c h e r c o n s t r u c t e d t h e a c c o u n t s t h a t w i l l be p r e s e n t e d i n C h a p t e r 4. 38 Chapter 4 THE INFORMANTS' ACCOUNTS The informants' accounts are used in this chapter to describe how informants experienced and managed diabetes in their day to day lives. Although i t is recognized that each informant offers a unique perspective and has unique experiences, central themes were identified from the data collected that were common among the informants' descriptions. The researcher, in this chapter, examined these shared aspects of the informants' experiences and their ways of managing diabetes in an attempt to gain a deeper understanding of the experience of living with diabetes. When informants described how they experienced and managed diabetes in their day to day lives, they located i t within the context of how they viewed diabetes. Therefore, the informants' views of diabetes w i l l be the f i r s t area presented. As informants described their perspectives on diabetes, their main concerns centred on making health decisions so that their diabetes would be "properly" managed. The informants described a pattern of health decision-making outlining distinct steps taken as decisions were being made regarding the management of their diabetes. Concurrent with describing how decisions were made, informants also shared information on how they experienced the illness as they progressed through each step of the decision-making process. Subsequently, a decision-making model was formulated based on the informants' decisions. This decision-making model wi l l provide a framework for presenting the rest of the data in this chapter. 39 V i e w o f D i a b e t e s When i n f o r m a n t s d e s c r i b e d how t h e y e x p e r i e n c e d a n d managed d i a b e t e s , t h e i r d e s c r i p t i o n s were s i t u a t e d w i t h i n t h e c o n t e x t o f how t h e y v i e w e d d i a b e t e s . T h e s e d e s c r i p t i o n s were o f t e n r e m o t e f r o m m e d i c a l e x p l a n a t i o n s a b o u t t h e c a u s e o f d i a b e t e s . C a u s e o f D i a b e t e s As t h e r e s e a r c h e r e x p l o r e d how i n f o r m a n t s p e r c e i v e d d i a b e t e s , i t became e v i d e n t t h a t t h e i r n o t i o n s a b o u t t h e c a u s e o f d i a b e t e s p l a y e d a n I m p o r t a n t r o l e i n d e t e r m i n i n g t h e i r e x p e r i e n c e s a n d h e l p - s e e k i n g p a t t e r n s . The i n f o r m a n t s ' u n d e r s t a n d i n g o f t h e c a u s e o f d i a b e t e s h a d g r e a t i m p a c t on how c l i e n t s made h e a l t h d e c i s i o n s . T h e s e c a u s e s i d e n t i f i e d b y i n f o r m a n t s were most o f t e n r e l a t e d t o p a s t e x p e r i e n c e s s e e n a s s i g n i f i c a n t b y them. One i n f o r m a n t e x p l a i n e d t h a t s h e d i d n o t ha v e d i a b e t e s b e f o r e c o m i n g t o C a n a d a . I t was o n l y when s h e came t o Ca n a d a when s h e was 70 y e a r s o l d a n d had d i f f i c u l t y a d a p t i n g t o t h e s o i l a n d 4 w a t e r t h a t s h e g o t d i a b e t e s . I = I n f o r m a n t R = R e s e a r c h e r I : T h i s i s what I t h i n k m y s e l f . I t h i n k i t i s b e c a u s e t h e w a t e r a n d s o i l i s n o t r i g h t f o r me. The same t h i n g h a p p e n e d t h r o u g h o u t my w h o l e l i f e . When I was y o u n g , b a c k when I was a y o u n g woman, I was b r o u g h t up on w a t e r f r o m t h e w e l l s . Two t o t h r e e months a f t e r I g o t m a r r i e d , I became v e r y s i c k . I was s h i v e r i n g a n d had c o l d s h a k e s , b e c a u s e I was d r i n k i n g a d i f f e r e n t t y p e o f w a t e r . My m o t h e r s a i d t h a t I must have g o t t e n s i c k b e c a u s e I d r a n k a d i f f e r e n t t y p e o f w a t e r . I g r e w up on w a t e r f r o m t h e w e l l , a n d t h e n I d r a n k a d i f f e r e n t t y p e o f w a t e r . I e v e n l o s t a l l my h a i r J of c o u r s e , what my m o t h e r s a i d must have b e e n r i g h t b e c a u s e s h e i s my m o t h e r . T h a t ' s why I knew why I g o t d i a b e t e s when I came h e r e . The d r i n k i n g w a t e r i s d i f f e r e n t . The w a t e r h e r e i s t o o ' c o l d 1 . As t h e i n f o r m a n t a t t r i b u t e d t h e c a u s e o f h e r d i a b e t e s t o t h e w a t e r b e i n g t o o ' c o l d ' I n C a n a d a , s h e p r o c e e d e d t o a v o i d a l l • c o l d ' f o o d s t o p r e v e n t f u t h e r d e t e r i o r a t i o n o f h e r h e a l t h . I : The w a t e r h e r e Is t o o ' c o l d ' . So I a v o i d e d a l l ' c o l d ' f o o d s a l s o , l i k e s a l y e u n g c h o y ( a t y p e o f v e g e t a b l e ) a n d w a t e r c h e s t n u t s . R: I f y o u e a t t h o s e f o o d s , t h e n what w i l l h a p p e n ? I : T hen y o u r arms a n d f e e t w i l l g e t t i r e d . I am v e r y t i r e d now! I c a n n o t s l e e p a t n i g h t . My e y e s g e t v e r y t i r e d , a n d I f e e l d i z z y . A n o t h e r i n f o r m a n t r e l a t e d t h e c a u s e o f h e r i l l n e s s t o a p a s t s i g n i f i c a n t e v e n t . A c c o r d i n g t o h e r a c c o u n t s , b e c a u s e t h e e v e n t h ad s u c h s e v e r e e f f e c t s on h e r e m o t i o n a l l y , t h e e v e n t c a u s e d h e r d i a b e t e s . R: What i s y o u r u n d e r s t a n d i n g o f d i a b e t e s ? I : I t h i n k i t i s t h e i n s u l i n , n o , i t i s t h e p a n c r e a s , i t s f u n c t i o n i n g h a s w e a k e n e d . T h e r e f o r e , i t h a s d i f f i c u l t y i n m a k i n g t h e i n s u l i n . As a r e s u l t , I have t o t a k e i n j e c t i o n s . R: So t h e p a n c r e a s ' f u n c t i o n h a s c e a s e d ? I : I t i s n ' t t h a t i t c a n ' t f u n c t i o n a n y m o r e . I t c a n s t i l l f u n c t i o n b u t b e c a u s e my e m o t i o n s were n o t w e l l a n d s u d d e n l y , my b l o o d s u g a r went up. I t was b e c a u s e my s o n who l i v e d i n t h e U n i t e d S t a t e s , he d i e d . He was a r o u n d 41 50 p l u s . When he d i e d , my e m o t i o n s were v e r y s a d . I g u e s s t h a t h a d some e f f e c t , a n d my b l o o d s u g a r went up. I t was up t o 400 p l u s . . . F o r a p e r s o n , when h i s e m o t i o n s a r e v e r y b a d , a l l h i s i n t e r n a l o r g a n s w i l l be a f f e c t e d . T h i s i n f o r m a n t c o n t i n u e d t o e x p l a i n how e m o t i o n s a f f e c t a p e r s o n ' s h e a l t h . I : F o r a p e r s o n , when h i s e m o t i o n s a r e v e r y b a d , a l l h i s i n t e r n a l o r g a n s w i l l be a f f e c t e d . F o r e x a m p l e , y o u r s t o m a c h i s a f f e c t e d . You w o u l d n o t want t o e a t , r i g h t ? When y o u r e m o t i o n s a r e n o t w e l l , y o u w o u l d n ' t want t o e a t . S o m e t i m e s i f y o u ha v e a n y f e a r , t h a t w i l l a f f e c t y o u r h e a r t . Y o u r h e a r t w i l l b e a t f a s t e r . As s h e p o i n t e d o u t t h a t b a d e m o t i o n s c a u s e d h e r d i a b e t e s , t h e i n f o r m a n t was d e t e r m i n e d t o l i v e p e a c e f u l l y a n d a d o p t a n o p t i m i s t i c v i e w on l i f e . She d e s c r i b e d how s h e f i n a l l y d e a l t w i t h t h e d e a t h o f h e r s o n . I : I t h o u g h t t o m y s e l f , " M y s o n h a s d i e d a n d i s o v e r 50. I f I k e e p on b e i n g a n g r y a n d s a d , i t w o u l d h u r t my o t h e r s o n . " I t h o u g h t t o m y s e l f , " L e t i t b e ! I w i l l meet h i m a g a i n when I d i e . " So I t r i e d t o c o m f o r t m y s e l f a n d make m y s e l f t h i n k more o p t i m i s t i c a l l y . As i n f o r m a n t s d e s c r i b e d how t h e y v i e w e d d i a b e t e s , most o f them a s s o c i a t e d t h e a c q u i s i t i o n o f d i a b e t e s t o a p e r i o d o f t i m e , p r i o r t o t h e a c t u a l o c c u r r e n c e o f t h e i l l n e s s , when t h e y e x p e r i e n c e d w eakened h e a l t h c o n d i t i o n s . One i n f o r m a n t s t a t e d t h a t t h e r e a s o n s h e h a s d i a b e t e s i s b e c a u s e s h e d i d n o t t a k e c a r e o f h e r h e a l t h when s h e was y o u n g e r . As h e r h e a l t h was we a k e n e d , s h e a c q u i r e d d i a b e t e s . I : I t ' s b e c a u s e my h e a l t h i s n o t s t r o n g e n o u g h . I know a b o u t my own b o d y , r i g h t ? when I had my c h i l d r e n , I had n i n e c h i l d r e n , when I was y o u n g , I was e n e r g e t i c . G i v i n g b i r t h t o c h i l d r e n was l i k e g o i n g t o t h e b a t h r o o m t o have a b o w e l movement. I n e v e r r e s t e d a n d r e l a x e d l i k e o t h e r p e o p l e . When o t h e r p e o p l e r e s t e d , t h e y p u t a p i e c e o f c l o t h t o w r a p t h e i r h e a d s . T h e y a l s o wore e n o u g h c l o t h e s a n d s t a y e d a t home s o t h e y w o u l d n ' t be e x p o s e d t o t h e w i n d s a nd t h e s u n . B u t f o r me, I go t o t h e f i e l d s t o c o l l e c t f i r e w o o d a n d h a y . I n e v e r r e s t e d , I go t o t h e f a r m a nd g r o w v e g e t a b l e s . I d i d e v e r y t h i n g . I w o u l d n e v e r s a y , "Oh, I'm n o t f e e l i n g w e l l t o d a y . " I n e v e r d i d t h a t . R: And y o u ' r e s a y i n g y o u r h e a l t h i s n o t a s good now? I : I f e e l w e a k e r now. When I was w o r k i n g t h e n , I o v e r d i d i t . I o v e r d i d i t and I d i d n ' t e v e n know. And I d i d n ' t e a t p r o p e r l y . P e o p l e w o u l d e a t c h i c k e n a n d w i n e , b u t I n e v e r d i d . R: Would t h a t h a v e s o m e t h i n g t o do w i t h w h a t ' s h a p p e n i n g t o y o u r h e a l t h now? I : Y e s ! B e c a u s e I w o r k e d l i k e t h a t i n t h e p a s t , t h a t ' s why I h a v e d i a b e t e s now. B e c a u s e I d i d n ' t t a k e c a r e when I was y o u n g , my h e a l t h i s a f f e c t e d now. My h e a l t h i s w e a k e r a nd t h a t ' s why. S i m i l a r l y , a n o t h e r i n f o r m a n t s t a t e d t h a t t h i s w e akened s t a t e o f h e a l t h c o n t r i b u t e d t o h e r d i a b e t e s . I : I f y o u r h e a l t h i s weak, t h e n y o u m i g h t g e t d i a b e t e s and n o t know a b o u t i t . R: What do y o u mean when y o u s a y y o u r h e a l t h i s weak? I : The p e r s o n i s n o t v e r y g o o d . I t i s v e r y e a s y t o g e t d i z z y . As we c a n s e e f r o m t h e d a t a , what i n f o r m a n t s a t t r i b u t e d t o be t h e c a u s e o f d i a b e t e s were numerous a nd v a r i e d . M o r e o v e r , t h e s e c a u s e s had enormous i m p a c t on how i n f o r m a n t s e x p e r i e n c e d a n d managed t h e i r i l l n e s s . I n t h e r e s e a r c h e r ' s a t t e m p t t o g a i n a d e e p e r u n d e r s t a n d i n g o f how i n f o r m a n t s v i e w e d d i a b e t e s , i n f o r m a n t s were a l s o a s k e d t o e x p l a i n how t h e i r d i a b e t e s w o r k e d . E x p l a n a t i o n s o f How D i a b e t e s Worked One i n f o r m a n t r e a s o n e d t h a t d i a b e t e s o c c u r r e d when t h e r e was no s u g a r l e f t i n t h e b o d y . I : When y o u ha v e s u g a r d i a b e t e s , y o u r s u g a r i s a l l g o n e , n o t h i n g l e f t . Y o u r b o d y h a s no s u g a r . I t ' s j u s t l i k e b e i n g a n a i r p l a n e w i t h o u t f u e l . He p r o c e e d e d t o e x p l a i n t h a t b e c a u s e t h e b o d y had no s u g a r , t h a t i s why he n e e d e d t o t a k e s u g a r c u b e s when he had a n i n s u l i n r e a c t i o n . A n o t h e r i n f o r m a n t had r o u g h a n d i t c h y s k i n . She e x p l a i n e d t h a t a s h e r d i a b e t i c c o n d i t i o n p e r s i s t e d , t h e " p o i s o n " f r o m h e r d i a b e t e s d i s p e r s e d o u t w a r d l y . R: What i s y o u r u n d e r s t a n d i n g o f d i a b e t e s ? I : T h a t ' s when t h e p o i s o n i n y o u r b o d y i s d i s p e r s i n g a n d c o m i n g o u t . She s t a t e d t h a t t h i s " p o i s o n " c a u s e d h e r t o h a v e s k i n p r o b l e m s a n d t o s u f f e r f r o m o t h e r a i l m e n t s * I : When y o u g e t t h a t t h i n g ( p o i s o n ) , e v e n y o u r b o d y g e t s r o u g h . Then I have t o s c r a t c h i t . I t f e e l s s o r o u g h . I t f e e l s s o r o u g h I h a v e t o b o i l w a t e r t o b u r n i t ! R: You b o i l w a t e r t o b u r n i t , how come? i : B e c a u s e i t ' s r o u g h , a n d i t h u r t s . , . A f t e r I b u r n i t , t h e n I c o u l d c o n t r o l i t ( t h e i t c h i n g ) t i l l n i g h t - t i m e . V i e w s o f D i a b e t e s a s a n I l l n e s s As i n f o r m a n t s g a v e e x p l a n a t i o n s o f how t h e i r d i a b e t e s w o r k e d , t h e y d e s c r i b e d t h e i r v i e w s o f d i a b e t e s a s a n i l l n e s s . M o s t i n f o r m a n t s v i e w e d d i a b e t e s a s a l o n g t e r m d i s e a s e t h a t m i g h t b r i n g s e r i o u s c o n s e q u e n c e s . I n f o r m a n t s s t r e s s e d t h a t t h e i m p o r t a n t t h i n g t o do i s t o k e e p t h e d i a b e t e s u n d e r c o n t r o l . One i n f o r m a n t e m p h a s i z e d t h a t d i a b e t e s was a l w a y s p r e s e n t b u t t h e i m p o r t a n t t h i n g t o do was t o k e e p i t u n d e r c o n t r o l . I : I t ' s t h e w o r s t ( d i s e a s e ) ! I d o n ' t know, b u t I w o u l d s a y i t ' s t h e w o r s t . R: What do y o u t h i n k o f i t s p r o g n o s i s ? I : You c a n ' t c u r e i t . The o n l y c u r e i s t h a t t e m p o r a r i l y y o u d o n ' t have s u g a r i n y o u r b l o o d , a n d y o u w o u l d n ' t n e e d t o t a k e t h e m e d i c i n e . A n o t h e r i n f o r m a n t v o i c e d t h a t d i a b e t e s was l o n g t e r m , b u t she o n l y had t o make m i n o r a d j u s t m e n t s a s a r e s u l t o f t h e i l l n e s s . R: What e f f e c t s d o e s d i a b e t e s have on y o u ? I : T h e r e ' s n o t much e f f e c t . The o n l y t h i n g i s t h a t when I e a t , I do n o t d a r e t o e a t t o o much. R: Have y o u e x p e r i e n c e d many c h a n g e s f r o m d i a b e t e s ? I : When my s o n s o r my f r i e n d s go o u t f o r l u n c h w i t h me, t h e o n l y c h a n g e i s t h a t I d o n ' t d a r e t o e a t t o o much. Once my a p p e t i t e i s s a t i s f i e d , I am c o n t e n t e d . I d o n ' t d a r e t o e a t t o o much. R: What do y o u t h i n k y o u r d i a b e t e s i s l i k e ? I : I t h i n k t h e d i a b e t e s i s l o n g t e r m . B u t a s l o n g a s t h e b l o o d s u g a r i s n o t t o o h i g h , t h e n i t d o e s n ' t m a t t e r . 45 One f r i e n d t o l d me t h a t h e r d i s e a s e h a s b e e n t h e same f o r 30 y e a r s . The o n l y t h i n g i s y o u h a v e t o be c a r e f u l w i t h y o u r d i e t . A l t h o u g h i n f o r m a n t s a d m i t t e d t h a t d i a b e t e s i s a l o n g t e r m i l l n e s s t h a t may b r i n g s e r i o u s c o n s e q u e n c e s , t h e y e x p e r i e n c e d f e w e f f e c t s f r o m t h e i l l n e s s . T r u s t i n B l o o d a n d / o r U r i n e T e s t R e s u l t s As I n f o r m a n t s e x p e r i e n c e d f e w o b v i o u s p h y s i c a l symptoms f r o m d i a b e t e s , t h e y r e l i e d h e a v i l y on b l o o d a n d / o r u r i n e t e s t s t o d e t e r m i n e how w e l l t h e y were d o i n g . I n f o r m a n t s t a l k e d a b o u t t h e i r i l l n e s s u s i n g w o r d s l i k e " h e a v y " , " l i g h t " , o r b e i n g " c l e a n " o f d i a b e t e s . T h e s e d e s c r i p t i o n s were u s e d i n a c c o r d a n c e w i t h b l o o d a n d / o r u r i n e t e s t r e s u l t s . I : I t ( d i a b e t e s ) i s n o t a g ood t h i n g . I t i s a d i s e a s e t h a t i s i n y o u r i n n e r o r g a n s . I f i t i s h e a v y , i t i s n o t g o o d . I f i t i s l i g h t , t h e n y o u c a n s t i l l c o n t r o l i t . R: You t a l k e d a b o u t y o u r d i a b e t e s b e i n g a l l c l e a n now. What do y o u mean b y t h a t ? I : I s t i l l c a n n o t c l e a n a l l o f i t . When d i a b e t e s i s a l l c l e a n , t h e n t h e u r i n e t e s t a n d t h e s t r i p t o t e s t u r i n e w i l l show i t . . . I f y o u have d i a b e t e s , t h e n t h e s t r i p t u r n s g r e e n . I f y o u r d i a b e t e s i s c l e a n , t h e n y o u w o u l d n ' t s e e a n y t h i n g , i n f a c t , t h e t e s t r e s u l t s o f t e n d e t e r m i n e d t h e s e v e r i t y o f d i a b e t e s f o r i n f o r m a n t s , a n d g o v e r n e d t h e t y p e s o f t h i n g s i n f o r m a n t s w o u l d e a t . R: What do y o u f e a r most a b o u t d i a b e t e s ? I : What I f e a r most i s t h a t I w i l l d i e f r o m d i a b e t e s . I f i t ' s t o o d e e p , t h e n I w i l l d i e . I f t h e d i s e a s e g e t s t o t h a t c o l o u r ( p o i n t s t o a b l u e c o l o u r on a b o t t l e ) , t h e n y o u w o u l d n ' t be c u r e d . R: I t seems l i k e many t i m e s , y o u r e l y on b l o o d t e s t r e s u l t s t o d e t e r m i n e what t o d o . I : S o m e t i m e s i f y o u e a t t h i n g s t h a t a r e n o t r i g h t f o r y o u , t h e b l o o d t e s t r e s u l t s w i l l show. So t h e n , I w o u l d n ' t c o n t i n u e t o e a t t h o s e t h i n g s . A n o t h e r i n f o r m a n t i l l u s t r a t e d how b l o o d a n d / o r u r i n e t e s t r e s u l t s d i r e c t e d h e a l t h b e h a v i o u r s . The t e s t r e s u l t s d e t e r m i n e d w h e t h e r s h e was e a t i n g t h e " r i g h t " f o o d s o r n o t . R: You m e n t i o n e d l a s t t i m e t h a t y o u need n o t l i s t e n t o e v e r y t h i n g t h e W e s t e r n d o c t o r s a y s , b u t y o u have t o f o l l o w what t h e b l o o d t e s t r e s u l t s t e l l y o u . Why a r e t h e b l o o d t e s t r e s u l t s s o i m p o r t a n t ? I : I t ' s v e r y i m p o r t a n t . I f t h e b l o o d t e s t r e s u l t s a r e g o o d , i t t e l l s y o u i f y o u have b e e n e a t i n g t h e r i g h t t h i n g s . I f t h e r e s u l t s a r e b a d , t h e n y o u a r e n o t e a t i n g t h e r i g h t t h i n g s . A l l d o c t o r s do t h a t . S o m e t i m e s i f t h e d o c t o r g a v e me s o m e t h i n g t h a t i s n o t r i g h t f o r me, t h e n I make some m e d i c i n e f o r m y s e l f t o g e t b e t t e r . B e c a u s e t h e i n f o r m a n t s ' t e s t r e s u l t s a n d t h e i r h e a l t h c o n d i t i o n s were p e r c e i v e d t o be s o c l o s e l y a s s o c i a t e d , on o c c a s i o n s , t h e t e s t r e s u l t s d i c t a t e d how w e l l t h e i n f o r m a n t s were f e e l i n g . I : Now I d o n ' t f e e l l i k e e a t i n g . Once I l e a r n t i t ( b l o o d s u g a r ) i s u p, I f e e l t h a t I'm s i c k . I t ( b l o o d s u g a r ) has gone up t o 200! I t u s u a l l y i s a b o u t 80. I have n e v e r gone up t o 200! T h a t ' s why I am v e r y a f r a i d . I d o n ' t know what t o do now. 47 R: I t seems l i k e y o u r e l y on y o u r b l o o d s u g a r i n d e t e r m i n i n g how y o u a r e ? I : 85 i s n o t t o o h i g h . 140 i s n o t t o o h i g h e i t h e r . Once I l e a r n t a b o u t i t ( b l o o d s u g a r ) , I c o u l d n ' t e v e n g e t up. As i l l u s t r a t e d , i n f o r m a n t s w i t h d i a b e t e s o f t e n u s e d b l o o d a n d / o r u r i n e t e s t s t o d i r e c t h e a l t h b e h a v i o u r s a n d d e t e r m i n e h e a l t h c o n d i t i o n s . S i n c e p e o p l e p a i d s u c h c l o s e a t t e n t i o n t o t h e s e t e s t r e s u l t s a n d b a s e d h e a l t h d e c i s i o n s on them, h e a l t h p r o f e s s i o n a l s s h o u l d e n s u r e t h a t i n d i v i d u a l s w i t h d i a b e t e s u n d e r s t a n d what t h e s e r e s u l t s mean and h e l p t h e m i n t e r p r e t t h e s e r e s u l t s a c c u r a t e l y . E f f e c t s of Diabetes on I n f o r m a n t s ' U v e s A l t h o u g h some i n f o r m a n t s e x p e r i e n c e d m i n o r a d j u s t m e n t s i n t h e i r l i v e s , o t h e r s d e s c r i b e d i n d e t a i l how d i a b e t e s a f f e c t e d t h e i r l i v e s . Many i n f o r m a n t s e x p r e s s e d g e n e r a l i z e d d i s c o m f o r t s a n d c o m p l a i n e d o f i n c o n v e n i e n c e s i n t h e i r l i v e s a s a r e s u l t o f d i a b e t e s . One i n f o r m a n t t a l k e d a b o u t a g e n e r a l s t a t e o f w e a k n e s s s i n c e s h e h a s had d i a b e t e s . I : I am v e r y t i r e d now! I c a n n o t s l e e p a t n i g h t . My e y e s g e t v e r y t i r e d , a n d I f e e l d i z z y . My i n n e r o r g a n s do n o t f e e l g o o d , a nd my head h a s no s t r e n g t h . My head w i l l o f t e n l a g b a c k w a r d s w h i l e I am s i t t i n g . A n o t h e r a s s o c i a t e d t h e s w e l l i n g o f h e r f e e t t o " p o i s o n " b e i n g d i s p e r s e d f r o m d i a b e t e s . R: what i s t h e r e l a t i o n s h i p b e t w e e n t h e s w e l l i n g o f y o u r f e e t a n d d i a b e t e s ? I : T h a t s w e l l i n g was a l l b e c a u s e t h a t s t u f f was d i s p e r s i n g o u t . T h a t s w e l l i n g went on f o r a w h o l e y e a r ! I t ' s o n l y now t h a t t h i n g s a r e t a k e n c a r e o f . i n a n o t h e r i n s t a n c e , t h e i n f o r m a n t s t a t e d t h a t d i a b e t e s was t h e c a u s e o f h e r n o t b e i n g a b l e t o w a l k . As a r e s u l t , s h e h a d t o be i n c r e a s i n g l y d e p e n d e n t on o t h e r s f o r h e l p . I : I f e e l s o u n c o m f o r t a b l e . I t ' s b e c a u s e o f w h a t ? I t ' s a l l b e c a u s e o f t h e d i a b e t e s . I f I have no d i a b e t e s , t h e n my l e g s c a n w a l k , a n d I ' d be s o h a p p y . R: I t seems l i k e d i a b e t e s a f f e c t s y o u i n many ways. I : Y e s . D i a b e t e s c a u s e d me n o t t o be a b l e t o w a l k . . . B e f o r e , I was a b l e t o do a n y t h i n g . Now I d o n ' t e v e n h a v e a good a p p e t i t e . I t ' s t r o u b l e s o m e now b e c a u s e I c a n ' t do t h i n g s m y s e l f . One o f t h e i n f o r m a n t s , who had h i s l e g a m p u t a t e d a s a r e s u l t o f d i a b e t e s , d e s c r i b e d t h e c h a n g e i n h i s l i f e . F o l l o w i n g t h e a m p u t a t i o n o f h i s l e g , he q u i t h i s j o b and made numerous a d j u s t m e n t s i n h i s l i f e i n o r d e r t o r e m a i n a c t i v e . I : Of c o u r s e when y o u l o s e a l e g , y o u c a n n o t l e a d a n o r m a l l i f e . E v e r y t h i n g becomes i n c o n v e n i e n t . T h e r e ' s no s o l u t i o n . R: What c h a n g e s h a v e t h e r e b e e n a t home? I : No c h a n g e s . W h a t e v e r c h a n g e s t h e r e a r e a r e c h a n g e s I made m y s e l f . I c a n n o t be a s a c t i v e b e c a u s e i t i s d i f f i c u l t t o move a r o u n d . B u t I c a n s t i l l d r i v e . R: Y ou s t i l l d r i v e ? I : Y e s , I'm s t i l l d r i v i n g . And i t ' s i n c o n v e n i e n t t o go o u t , a n d i t ' s i n c o n v e n i e n t t o go up a n d down. I c a n ' t u s e t h i s t h i n g ( p o i n t s t o h i s w a l k e r ) t o h e l p me go down. I have t o use c r u t c h e s . And a f t e r I have gone down, t h e n I n e e d t o u s e t h e w a l k e r . F o r t h e i n f o r m a n t s i n t e r v i e w e d , t h e y had u n i q u e e x p l a n a t i o n s 49 f o r t h e c a u s e o f t h e i r I l l n e s s a n d how t h e i r d i a b e t e s w o r k e d . A l t h o u g h some i n f o r m a n t s e x p e r i e n c e d m i n o r a d j u s t m e n t s , o t h e r s d e s c r i b e d t h e m a j o r i m p a c t d i a b e t e s had on t h e i r l i v e s . E v e n t h o u g h i n f o r m a n t s v i e w e d d i a b e t e s t o be a s e r i o u s i l l n e s s w i t h l o n g t e r m e f f e c t s , t h e i r e n e r g y f o c u s e d on e n s u r i n g t h a t t e s t r e s u l t s were s a t i s f a c t o r y . The p r i m a r y c o n c e r n w i t h d i a b e t e s was m a k i n g h e a l t h d e c i s i o n s s o t h a t t h e i l l n e s s was k e p t u n d e r c o n t r o l . M a k i n g H e a l t h D e c i s i o n s W i t h i n t h e c o n t e x t o f how t h e y v i e w e d d i a b e t e s , i n f o r m a n t s d e s c r i b e d how t h e y e x p e r i e n c e d a n d managed t h e i r i l l n e s s . C e n t r a l themes t h a t emerged f r o m t h e s e d e s c r i p t i o n s c e n t e r e d on how i n f o r m a n t s made d e c i s i o n s i n t h e management o f d i a b e t e s and i n s e e k i n g h e l p . Themes t h a t were i d e n t i f i e d , b a s e d on i n f o r m a n t s ' a c c o u n t s , i n c l u d e d t h e i r e v a l u a t i o n o f t h e i r h e a l t h s t a t u s , r e s o u r c e s t h e y u s e d , what t h e y d i d w i t h t h e i n f o r m a t i o n f r o m t h e r e s o u r c e s , and how t h e y f o r m u l a t e d t h e i r own management s c h e m e s . The r e s e a r c h e r t h e n s y n t h e s i z e d and i n t e g r a t e d t h e s e t h e m e s , w h i l e r e l a t i n g them t o t h e i n f o r m a n t s * w h o l e e x p e r i e n c e , a n d f o r m u l a t e d a d e c i s i o n - m a k i n g m o d e l . T h i s m o d e l , a s shown i n F i g u r e 2 , r e p r e s e n t s t h e p r o c e s s i n f o r m a n t s went t h r o u g h i n m a k i n g h e a l t h d e c i s i o n s a s t h e y e x p e r i e n c e d and managed d i a b e t e s i n t h e c o n t e x t o f e v e r y d a y l i f e . W i t h i n t h i s m o d e l , i n f o r m a n t s e x p r e s s e d t h a t a f i r s t s t e p t h e y t o o k i n m a k i n g h e a l t h d e c i s i o n s was t o e v a l u a t e t h e i r h e a l t h s t a t u s . When t h e y e v a l u a t e d t h e i r h e a l t h s t a t u s , t h e y made t h e d i s t i n c t i o n b e t w e e n b e i n g " s i c k " a nd " n o t s i c k " . The e v a l u a t i o n o f h e a l t h s t a t u s t h e n h e l p e d I n f o r m a n t s d e t e r m i n e what h e a l t h c a r e r e s o u r c e s t h e y w o u l d s e e k h e l p f r o m . U s i n g Kleinman's c u l t u r a l system model (1978) as a c o n c e p t u a l framework, the r e s e a r c h e r c o n c e p t u a l i z e d these h e a l t h care resources as d i v i d e d i n t o three domains: the p r o f e s s i o n a l , popular ( f a m i l y , s o c i a l network, community), and 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 ) . Based on t h i s c o n c e p t u a l i z a t i o n of h e a l t h care r e s o u r c e s , the r e s e a r c h e r i d e n t i f i e d a p a t t e r n of h e l p - s e e k i n g used by informants. The p a t t e r n of h e l p - s e e k i n g depended, to a l a r g e extent, on whether informants d e f i n e d themselves as being " s i c k " or "not s i c k " . When informants d e f i n e d themselves as being "not s i c k " , they managed with help from both the popular and f o l k domains. On the other hand, i f they decided they were " s i c k " , informants proceeded to manage with help from the popular, f o l k , and/or p r o f e s s i o n a l domains. Subsequently, informants c o l l e c t e d data from domains they have c o n s u l t e d , analyzed i n f o r m a t i o n from these h e a l t h care r e s o u r c e s , and c r e a t e d a p r e f e r r e d treatment regime f o r themselves. F i n a l l y , they put what they have c r e a t e d i n t o a c t i o n as they t r e a t e d t h e i r own i l l n e s s . The decision-making model i l l u s t r a t e d i n F i g u r e 2 w i l l serve as an o r g a n i z i n g framework to present the data f o r t h i s study. In subsequent s e c t i o n s i n t h i s chapter, each s t e p of the decision-making process, as d e s c r i b e d by informants, w i l l be f u r t h e r d i s c u s s e d a t l e n g t h . INFORMANTS' EVALUATION OF HEALTH STATUS HEALTH CURE  RESOURCES INFORMANTS INFORMATION COLLECTING INFORMANTS' ANALYSIS OF| INFORMATION FROM HEALTH CARE RESOURCES INFORMANTS' CREATION OF OWN HACTION TREATMENT REGIME F i g u r e 2, I n f o r m a n t s 1 d e c i s i o n - m a k i n g model f o r h e l p - s e e k i n g , 52 E v a l u a t i o n o f H e a l t h S t a t u s A c o n s t a n t d e c i s i o n i n f o r m a n t s had t o make i n t h e i r d a i l y l i v e s was t o e v a l u a t e t h e i r h e a l t h s t a t u s , i n t h e i r e v a l u a t i o n , t h e y d i s t i n g u i s h e d w h e t h e r t h e y were " s i c k " o r " n o t s i c k " . T h i s e v a l u a t i o n was e x t r e m e l y i m p o r t a n t t o i n f o r m a n t s a s i t g u i d e d t h e m i n d e t e r m i n i n g how t h e y managed t h e i r c o n d i t i o n s a n d t o whom t h e y t u r n e d f o r h e l p . I n f o r m a n t s o f t e n e q u a t e d b e i n g " s i c k " w i t h b e i n g u n h e a l t h y a n d b e i n g " n o t s i c k " w i t h b e i n g h e a l t h y . I : I f y o u h a v e no s i c k n e s s , t h e n y o u a r e h e a l t h y . I f y o u r s p i r i t s a r e g o o d , a n d y o u a r e n o t s i c k , t h e n y o u a r e h e a l t h y . I f y o u h a v e p a i n a n d a c h e s a l l o v e r t h e p l a c e , t h e n y o u a r e u n h e a l t h y . I n f o r m a n t s d e c i d e d t h e y were " s i c k " when t h e y s e n s e d t h e r e was s o m e t h i n g t h e m a t t e r w i t h them. A t t h a t t i m e , i n f o r m a n t s f e l t t h e y w e re " n o t w e l l " . T h e y f e l t " d i f f e r e n t " , t h e y d i d n o t f e e l " c o m f o r t a b l e " , o r t h e y f e l t t h a t " s o m e t h i n g ' s w r o n g " . E s p e c i a l l y when p h y s i c a l symptoms were e v i d e n t , i n f o r m a n t s d e s c r i b e d t h e m s e l v e s a s b e i n g " s i c k " . I : When I f e e l d i z z y , o r when I v o m i t a l l o v e r t h e p l a c e , t h e n I c a l l h i m ( d o c t o r ) . On t h e o t h e r h a n d , i n f o r m a n t s d e s c r i b e d t h e m s e l v e s a s " n o t s i c k " when t h e r e were no s i g n i f i c a n t c h a n g e s i n t h e i r l i v e s . I : I f t h e r e ' s n o t h i n g t h e m a t t e r w i t h my b o d y , I d o n ' t need t o go s e e t h e d o c t o r . . . I f n o t h i n g ' s t h e m a t t e r , I d o n ' t go t o s e e h i m . Some i n f o r m a n t s e m p h a s i z e d t h a t when t h e y were " n o t s i c k " , t h e r e was a l a c k o f p h y s i c a l a i l m e n t s . I : I f y o u h a v e no p a i n o r s u f f e r i n g , t h e n y o u a r e n o t s i c k . 53 I f y o u f e e l d i z z y and t h i n g s l i k e t h a t , t h e n i t i s n o t g o o d . O t h e r s s a i d t h a t when t h e y were " n o t s i c k " , t h e y w e re a b l e t o l i v e a n o r m a l a nd o r d i n a r y k i n d o f l i f e . I : When I'm n o t s i c k , t h e n I'm l i k e o r d i n a r y p e o p l e , t h e n I'm n o t s i c k . R: Would y o u s a y more? I : I t w o u l d be l i k e u s u a l t i m e s . S t i l l , o t h e r s d e s c r i b e d n o t " b e i n g s i c k " a s a t i m e when t h e i r " s p i r i t s a r e g o o d " . T h i s i s a p e r i o d o f t i m e when t h e y f e l t e n e r g e t i c , c o p e d w e l l w i t h d a i l y demands, and e n j o y e d l i f e . I : K eep e n e r g e t i c , go o u t s i d e . S a y s o m e t h i n g , e n j o y y o u r l i f e , t h a t makes y o u h a p p y . B e f o r e , somebody g o t a f e w b o y s a n d g i r l s . D a y t i m e , I t a k e t h e l i t t l e c h i l d r e n o u t t o w a l k . I l i k e t h a t . F r o m t h e i n f o r m a n t s ' d e s c r i p t i o n s , i n f o r m a n t s made a c l e a r d i s t i n c t i o n b e t w e e n b e i n g " s i c k " a n d " n o t s i c k " . I n f o r m a n t s d e s c r i b e d t h e m s e l v e s a s b e i n g " s i c k " when t h e y s e n s e d a c h a n g e i n t h e i r h e a l t h s t a t u s o r when p h y s i c a l symptoms were p r e s e n t . On t h e o t h e r h a n d , i n f o r m a n t s d e s c r i b e d t h e m s e l v e s a s " n o t s i c k " when t h e y were a b l e t o l e a d a r e l a t i v e l y n o r m a l l i f e w here t h e y e x p e r i e n c e d f e w c h a n g e s a nd when t h e r e was a n a b s e n c e o f p a i n and s u f f e r i n g . C h o i c e o f H e a l t h C a r e R e s o u r c e s I n f o r m a n t s ' e v a l u a t i o n o f w h e t h e r t h e y were " s i c k " o r " n o t s i c k " p l a y e d a n i m p o r t a n t r o l e i n d e t e r m i n i n g t h e t y p e o f h e a l t h c a r e r e s o u r c e s t h e y u t i l i z e d . H e a l t h c a r e r e s o u r c e s u t l i z e d b y i n f o r m a n t s i n c l u d e d t h e i r f a m i l y , f r i e n d s , W e s t e r n h e a l t h p r o f e s s i o n a l s , C h i n e s e f o l k d o c t o r s , and i n f o r m a t i o n 54 f r o m b o o k s , m a g a z i n e s , a n d n e w s p a p e r a r t i c l e s . As m e n t i o n e d , t h e r e s e a r c h e r u s e d K l e i n m a n ' s c u l t u r a l s y s t e m m o d e l (1978) a s a c o n c e p t u a l f r a m e w o r k a n d c o n c e p t u a l i z e d h e a l t h c a r e r e s o u r c e s i n t o t h r e e d o m a i n s . T h e s e t h r e e d o m a i n s i n c l u d e d : p r o f e s s i o n a l , p o p u l a r ( f a m i l y , s o c i a l n e t w o r k , c o m m u n i t y ) , a n d 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 ) . The i n f o r m a n t s ' d e s c r i p t i o n s showed a c l o s e r e l a t i o n s h i p b e t w e e n t h e i r e v a l u a t i o n o f h e a l t h s t a t u s a n d t h e c h o i c e o f h e a l t h c a r e r e s o u r c e s , i n f o r m a n t s s t r e s s e d t h a t when t h e y were " n o t s i c k " , t h e y were t h e a u t h o r i t y I n h e a l t h d e c i s i o n - m a k i n g . I n c o n t r a s t , when t h e y were " s i c k " , t h e y e m p h a s i z e d t h a t t h e y m i g h t h a v e t o g i v e up some o f t h e i r d e c i s i o n - m a k i n g power and s e e k h e l p f r o m W e s t e r n h e a l t h p r o f e s s i o n a l s . I : I f y o u a r e h e a l t h y , t h e n i t ' s a l l up t o y o u what y o u want t o d o . I f y o u a r e u n h e a l t h y , t h e n y o u hav e t o f o l l o w what t h e d o c t o r s t e l l y o u . A n o t h e r i n f o r m a n t e l a b o r a t e d on how d e c i s i o n - m a k i n g d i f f e r e d d e p e n d i n g on t h e s i t u a t i o n a t h a n d . I : Of c o u r s e y o u c a n s t o p ( m e d i c a t i o n s ) when y o u a r e h e a l t h y a g a i n ! I f y o u a r e h e a l t h y , y o u do n o t hav e t o l i s t e n t o them ( d o c t o r a n d n u r s e ) a n y m o r e . I f I had t h e f l u a n d t h e f l u i s o v e r , I w o u l d s t o p d o i n g what t h e y ( d o c t o r a n d n u r s e ) s a y . I t a l l d e p e n d s on what i s h a p p e n i n g . H o wever, a n u n d e r l y i n g a s s u m p t i o n h e l d b y i n f o r m a n t s i s t h a t w h e t h e r t h e y were " s i c k " o r " n o t s i c k " , t h e u l t i m a t e r e s p o n s i b i l i t y was on them t o t a k e c a r e o f t h e m s e l v e s . I : I t r u s t my d o c t o r , b u t I have t o be on g u a r d . I have t o w a t c h f o r t h i n g s t h a t have s u g a r i n them, a n d a v o i d 55 them. I have t o watch f o r the d i e t by myself, and r e l y on myself. You have to l i s t e n to the d o c t o r , but you r e l y on y o u r s e l f . Although informants s t a t e d t h a t decision-making d i f f e r e d when they were " s i c k " or "not s i c k " , they s t i l l bore the u l t i m a t e r e s p o n s i b i l i t y to take care of themselves a t a l l times. Not Sick Informants d e s c r i b e d t h a t t h e i r p a t t e r n of h e a l t h d e c i s i o n -making changed depending on whether they were " s i c k " or "not s i c k " . When informants were "not s i c k " , they o f t e n sought help from people belonging to the popular and f o l k domains to prevent s i c k n e s s and/or maintain h e a l t h . Popular. informants used Information from a v a r i e t y of sources w i t h i n the popular domain to help them manage t h e i r d i a b e t e s . Information used might have o r i g i n a t e d from informants' own b e l i e f s , past e x p e r i e n c e s , hearsay, and/or r e l a t i v e s and f r i e n d s . Information was a l s o d e r i v e d from books on d i a b e t e s , newspaper, and magazines. One informant s a i d t h a t she had l e a r n t from v a r i o u s sources of i n f o r m a t i o n t h a t corn husks cooked with c h i c k e n helps to maintain low blood sugar. She i d e n t i f i e d these sources of i n f o r m a t i o n as the newspaper, books, magazines, and by hearsay. I: We saw i t ( i n f o r m a t i o n ) i n the newspaper. We o f t e n read the Chinese newspaper. Sometimes they t e l l us what to do. Some Chinese books and magazines t a l k about d i a b e t e s and teach me what to do...Some other people a l s o t a l k about i t ( i n f o r m a t i o n ) . For example, many people t a l k about corn husks. I t ' s not o n l y from the newspaper. 56 Another informant, whose f a t h e r was a Chinese h e r b a l i s t , s a i d she l e a r n t from him how to use h e r b a l medicine to manage her d i a b e t e s . These medicines were taken to prevent s i c k n e s s and to achieve a balance between "hot" and " c o l d " f a c t o r s i n the body. Many Chinese informants b e l i e v e d that m a i n t a i n i n g a balance between "hot" and " c o l d " f a c t o r s was a p r e r e q u i s i t e to being h e a l t h y . C: I o n l y know to buy t h i n g s to b o l l and eat them. I b o i l 'buck k e i * , 'hung j o ' , 'wong dong'...Every two or three days, I would b o i l a pot. I would b o i l them u n t i l t h ere are two bowls, then I take them...My o l d f a t h e r . My f a t h e r taught me a l l t h i s . When they were "not s i c k " , informants a l s o s e l e c t e d food remedies t h a t they b e l i e v e d were g e n e r a l l y good f o r the h e a l t h of i n d i v i d u a l s a t t h e i r age group. Making soup was a most common p r a c t i c e . Common i n g r e d i e n t s used f o r making soup i n c l u d e d p i g s ' pancreas, corn husks, sharks' f i n s , and b i r d s ' n e s t s . Another popular remedy was lime cooked with c h i c k e n . Informants l e a r n t about remedies they c o n s i d e r e d good f o r t h e i r h e a l t h from sources l i k e f a m i l y members, f r i e n d s , and the media. Other informants avoided foods they knew were not good f o r the e l d e r l y i n g e n e r a l . One informant s t a t e d that he overheard a p a t i e n t t e l l i n g another p a t i e n t i n the h o s p i t a l t h a t egg y o l k s and s a l t were not good f o r the e l d e r l y . To maintain good h e a l t h , he l a b e l l e d these foods as "dangerous" and avoided them. C: I a v o i d a l l sugars, whether i t i s white, y e l l o w , or brown sugar. Although you can take a r t i f i c i a l sugar, i t i s s t i l l b e t t e r not to take too much of i t . And I 57 r e s t r i c t s a l t . Sometimes t h i n g s l i k e egg y o l k s , they are dangerous a l s o . When they were "not s i c k " , informants c o l l e c t e d i n f o r m a t i o n from a v a r i e t y of sources. In the popular domain, sources of i n f o r m a t i o n i n c l u d e d f a m i l y , f r i e n d s , i n f o r m a t i o n from newspaper, books, magazines, and by hearsay. Based on these sources of i n f o r m a t i o n , informants adopted h e a l t h p r a c t i c e s i n an attempt to prevent s i c k n e s s and maintain good h e a l t h . F o l k . Informants a l s o sought i n f o r m a t i o n from the f o l k domain. Informants i d e n t i f i e d f o l k d o c t o r s as the primary persons they c o n s u l t e d with i n t h i s domain. Informants a l l e g e d t h a t s e e i n g Chinese f o l k d o c t o r s was the " r i g h t t h i n g t o do". It i s p e r c e i v e d t h a t mutual understanding e x i s t s between Chinese f o l k d o c t o r s and Chinese p a t i e n t s . One informant d e s c r i b e d how her f r i e n d recommended that she see a Chinese d o c t o r . I: Some f r i e n d s recommended I see a Chinese d o c t o r . They s a i d , "Because you come from China, s e e i n g a Chinese doctor i s the r i g h t t h i n g t o do." In a d d i t i o n , many Informants supported s e e i n g Chinese f o l k d o c t o r s when they were "not s i c k " as they p e r c e i v e d these d o c t o r s c o u l d r e l a t e to the Chinese concept of h e a l t h . One informant s t a t e d how important the concept of "c o l d n e s s " i s to the Chinese. He a s s e r t e d t h a t d r i n k i n g c o l d water would cause excess " c o l d n e s s " i n Chinese people and i n t u r n , harm them. I: Western d o c t o r s mostly t e l l you to d r i n k c o l d water. And Chinese, the body, the h e a l t h , c o l d water not so good f o r them. I t ' s b e t t e r that they d r i n k b o i l e d water. 58 Chinese f o l k d o c t o r s were a l s o p e r c e i v e d to understand concepts l i k e food r e s t r i c t i o n s t h a t were regarded as a b s o l u t e l y e s s e n t i a l to m a i n t a i n i n g good h e a l t h f o r Chinese people. Food r e s t r i c t i o n s were o f t e n p r e s c r i b e d by Chinese f o l k d o c t o r s t o s u i t the i n d i v i d u a l person so they may maintain a balance between "hot" and " c o l d " f a c t o r s i n the body. I: When you ask the Western d o c t o r , he would say you wouldn't need t o have any food r e s t r i c t i o n s . The Chinese doctor i s d i f f e r e n t . He would t e l l you there are some t h i n g s you cannot take. In a d d i t i o n , informants v o i c e d t h a t Information was sought from f o l k d o c t o r s to h e l p them take care of t h e i r h e a l t h even when they were "not s i c k " . Again, i n f o r m a t i o n from the f o l k domain, l i k e i n f o r m a t i o n from the popular domain, was f r e q u e n t l y sought to prevent s i c k n e s s and maintain h e a l t h . I: So you take some Chinese medicine to take care of y o u r s e l f . Informants s t a t e d t h a t they sought i n f o r m a t i o n from the f o l k domain because they c o u l d r e l a t e with f o l k d o c t o r s b e t t e r than with Western p r o f e s s i o n a l d o c t o r s . Moreover, informants acknowledged t h a t Chinese d o c t o r s have a deep understanding of Chinese concepts of h e a l t h . L i k e the popular domain, people from the f o l k domain were f r e q u e n t l y c o n s u l t e d i n order to prevent s i c k n e s s and maintain h e a l t h . P r o f e s s i o n a l . Some informants used the p r o f e s s i o n a l system of care f o r continuous m o n i t o r i n g of t h e i r c o n d i t i o n . However, most informants d i d not f e e l comfortable u s i n g the p r o f e s s i o n a l system of care when they were "not s i c k " , f o r fe a r they would " t r o u b l e " h e a l t h p r o f e s s i o n a l s . 59 I: I f e e l t h a t the doctor i s busy, o n l y when you are s i c k should you go to see him. I f you are not s i c k , and you ask him to l i s t e n (to the heart) here and t h e r e , I seldom do i t . But I f e e l the d o c t o r s are ve r y busy, and I would not want to t r o u b l e them. That's not very good to see him when you are not s i c k . Because not t r o u b l i n g p r o f e s s i o n a l s was t h a t s i g n i f i c a n t to informants, some t r i e d a t great lengths to a v o i d doing so. I: That's troublesome, and i t ' s not very good of me to do t h a t . People have work t o do. I o n l y need help when I r e a l l y f e e l i t ' s necessary. I f there i s something s e r i o u s , I can always c a l l t h a t car (ambulance) to come and send me to the h o s p i t a l . I don't l i k e to bother people. Even when informants were s l i g h t l y " s i c k " , they d i d not seek help from p r o f e s s i o n a l s but t r i e d to cope with the s i t u a t i o n themselves. One informant shared the experience of how she coped with an i n s u l i n r e a c t i o n . I: I t o l d myself not to p a n i c , because i f I panicked, then my heart w i l l get a l l mixed up. I q u i e t l y l a i d t here and c l o s e d my eyes, and I r e s t e d on my bed. I l i s t e n e d to the r a d i o programme. And when I s l e p t t h e r e , I d i d not f e e l as d i z z y . And at about 8:30, I f e l t a b i t b e t t e r , and I got up to make some c e r e a l . Only under circumstances when Informants were faced with a s e r i o u s s i t u a t i o n where they c o u l d not cope any longer would they seek p r o f e s s i o n a l h e l p . I: I t ' s l i k e t h i s . I f I can t o l e r a t e I t (the d i s c o m f o r t ) , then I t o l e r a t e i t . I f I can't t o l e r a t e any longer, 60 then I phone my son-in-law, (The informant's son-in-law d r i v e s her to see her d o c t o r ) . . . I o n l y c a l l him when I d e f i n i t e l y can't cope anymore. I f I can t o l e r a t e i t a l i t t l e l o n g er, I wouldn't c a l l him. I t i s important to note, t h e r e f o r e , t h a t when informants were "not s i c k " , they f r e q u e n t l y c o n s u l t e d with the popular and f o l k domains. Both domains provided i n f o r m a t i o n on how to prevent i l l n e s s and maintain h e a l t h . On the c o n t r a r y , people i n the p r o f e s s i o n a l domain were seldom c o n s u l t e d f o r the same purposes. Instead, informants i d e n t i f i e d Western medical d o c t o r s as people whose e x p e r t i s e i s used p r i m a r i l y to t r e a t s i c k n e s s e s . T h e r e f o r e , informants sought help from Western medical d o c t o r s o n l y when t h e i r c o n d i t i o n s were s e r i o u s and when they c o u l d not cope any l o n g e r . S IcK On the other hand, most informants i n t e r v i e w e d sought help from people belonging to the p r o f e s s i o n a l , f o l k , and popular domains when they were " s i c k " . P r o f e s s i o n a l . When informants were " s i c k " , p r o f e s s i o n a l s were sought out as primary c o n s u l t a n t s f o r t h e i r c a r e . Within the p r o f e s s i o n a l domain, informants u s u a l l y i d e n t i f i e d t h e i r d o c t o r as the primary person they would seek help from. I: When I'm s i c k , then I ask him ( d o c t o r ) . . . I ask him to come. When informants were " s i c k " , p r o f e s s i o n a l d o c t o r s were f r e q u e n t l y sought as they were c o n s i d e r e d experts i n the treatment of d i s e a s e . I: I f e l t t h a t I was g e t t i n g b e t t e r , and the d o c t o r ' s s c i e n t i f i c r e s e a r c h has made me improve. That i s why I 61 t r u s t e d my W e s t e r n d o c t o r . P r o f e s s i o n a l d o c t o r s were e s p e c i a l l y c o n s i d e r e d a p r i m a r y s o u r c e o f h e l p when u r g e n t m e a s u r e s w i t h r e g a r d s t o h e a l t h were n e e d e d . One i n f o r m a n t e x p l a i n e d t h a t when h e r s t a t e o f h e a l t h was " p i t i f u l " , s h e s o u g h t h e l p f r o m t h e W e s t e r n d o c t o r a s he p r o v i d e d q u i c k r e l i e f f o r p h y s i c a l c o m p l a i n t s . I : I c a l l e d my d o c t o r up t o g e t a n i n j e c t i o n . I t o l d h i m , "You h a v e t o g i v e me a n i n j e c t i o n . I h a v e t h i n g s ( b l i s t e r s ) a l l o v e r my b o d y . " So he g a v e me one ( i n j e c t i o n ) . And o n c e I had t h a t i n j e c t i o n , o h , my w h o l e b o d y f e l t r e l a x e d . E v e r y t h i n g was g o o d a g a i n . I n a d d i t i o n , i n c a s e o f e m e r g e n c y , p r o f e s s i o n a l d o c t o r s were i d e n t i f i e d a s t h e ones who had k e y a c c e s s t o h o s p i t a l s . I n f o r m a n t s a l s o v i e w e d t h e d o c t o r s a s p r i m a r y f i g u r e s who c o u l d p r o v i d e a c c e s s t o o t h e r r e s o u r c e s t h e y m i g h t n e e d when t h e y were " s i c k " . I : F a m i l y members c a n n o t h e l p much. Of c o u r s e , t h e y h e l p me i n t h e home by b e i n g c a r i n g . B u t t h e y c a n ' t h e l p me much on t h e o u t s i d e . The m a i n t h i n g i s t o g e t t h e r i g h t c o n n e c t i o n s . I f y o u g e t t h e r i g h t d o c t o r , t h e n he c a n r e f e r y o u t o o t h e r p e o p l e . I h a v e a good d o c t o r f r o m t h e famous XXX H o s p i t a l . He was t h e one who r e f e r r e d me t o a l l t h e o t h e r p e o p l e ( d i e t i c i a n , p h y s i o t h e r a p i s t ) . As m e n t i o n e d b e f o r e , p e o p l e f r o m b o t h p o p u l a r a n d f o l k d o m a i n s were o f t e n c o n s u l t e d t o p r e v e n t s i c k n e s s a n d m a i n t a i n h e a l t h . W e s t e r n m e d i c a l d o c t o r s , on t h e o t h e r h a n d , were c l e a r l y s e e n a s p e o p l e who p r i m a r i l y d e a l w i t h s i c k n e s s e p i s o d e s . T h e y were s e l d o m c o n s u l t e d f o r p r e v e n t a t i v e p u r p o s e s 62 o r f o r d a i l y management o f d i a b e t e s . B e s i d e s s t a t i n g why p r o f e s s i o n a l d o c t o r s were s o u g h t f o r h e l p , i n f o r m a n t s a l s o d i s c u s s e d t h e i r n o t i o n s o f t h e r o l e s t h e y e x p e c t e d d o c t o r s a n d p a t i e n t s t o p l a y i n t h e i r i n t e r a c t i o n s w i t h one a n o t h e r . Many i n f o r m a n t s s t a t e d t h a t t h e p r o f e s s i o n a l d o c t o r s ' r e s p o n s i b i l i t y was t o c a r e f o r t h e i r p a t i e n t s a n d c u r e a i l m e n t s . R: What do y o u t h i n k a d o c t o r ' s r o l e i s ? I : of c o u r s e i t i s t o t a k e c a r e o f h i s p a t i e n t s . The most i m p o r t a n t g o a l i s t o c u r e t h e p a t i e n t . He a l s o k e e p s a n eye on a n y t h i n g t h a t ' s d a n g e r o u s . And i f , t h e r e a r e a n y s u f f e r i n g s , he t r i e s t o c u r e y o u . O t h e r i n f o r m a n t s c o m p a r e d t h e p r o f e s s i o n a l d o c t o r ' s r o l e t o t h e r o l e o f p a r e n t s . J u s t a s p a r e n t s a r e p r o t e c t i v e o f t h e i r c h i l d r e n a n d l o v e them, d o c t o r s s h o u l d do t h e same f o r t h e i r p a t i e n t s . I : D o c t o r s s h o u l d be l i k e y o u r m o t h e r . He s h o u l d be l i k e y o u r f a t h e r o r m o t h e r . D o c t o r s ' h e a r t s a r e l i k e p a r e n t s ' h e a r t s . D o c t o r s c a n n o t do w h a t e v e r t h e y w a n t . T h e y have t o be v e r y c a r e f u l . I n f o r m a n t s may be f a c e d w i t h c o n t r a d i c t o r y s i t u a t i o n s when, on t h e one h a n d , p r o f e s s i o n a l d o c t o r s were v i e w e d a s p a r e n t s , a n d , on t h e o t h e r h a n d , t h e y were o n l y t o be c o n s u l t e d d u r i n g s i c k n e s s e p i s o d e s a n d n o t t o be t r o u b l e d a t o t h e r t i m e s . I n a d d i t i o n , i n f o r m a n t s d e s c r i b e d t h e i r r o l e a s p a t i e n t s . I n f o r m a n t s s t r e s s e d t h e i m p o r t a n c e o f c o m p l y i n g w i t h t h e i r d o c t o r s ' o r d e r s . I : I f y o u s e e h i m , y o u h a v e t o t r u s t h i m . What y o u do c a n n o t c o n f l i c t w i t h what t h e d o c t o r t e l l s y o u t o d o . 63 You have t o l i s t e n t o a l l o f h i s commands. R: Does t h a t mean y o u h a v e t o l i s t e n t o a l l t h a t he s a y s ? I : Of c o u r s e y o u do w h a t e v e r he s a y s . He i s t h e d o c t o r ! The s i t u a t i o n became more c o m p l e x , h o w e v e r , when p a t i e n t s were e x p e c t e d t o f o l l o w w h a t e v e r t h e d o c t o r s commanded, e v e n i f t h e y p e r c e i v e d t h a t t h e d o c t o r s ' r e c o m m e n d a t i o n s m i g h t n o t be i n t h e i r b e s t i n t e r e s t . M o s t i n f o r m a n t s r e s p e c t e d W e s t e r n m e t h o d s o f t r e a t m e n t . T h e y c o n s i d e r e d W e s t e r n m e d i c i n e c r u c i a l f o r t h e t r e a t m e n t o f t h e i r I l l n e s s . A l l i n f o r m a n t s t o o k t h e p r e s c r i b e d d o s a g e s o f i n s u l i n a s t h e y r e c o g n i z e d t h e s e r i o u s n e s s o f t a k i n g t h e r i g h t amounts o f I n s u l i n . Some i n f o r m a n t s h a v e , h o w e v e r , r e d u c e d t h e i r i n t a k e o f o r a l m e d i c a t i o n s l i k e a n t i h y p e r t e n s i v e s o r d i u r e t i c s . B e s i d e s u s i n g W e s t e r n m e d i c i n e , i n f o r m a n t s m i g h t a d d i t i o n a l l y u s e o t h e r methods o f t r e a t m e n t t o manage t h e i r i l l n e s s . Many i n f o r m a n t s , f o r e x a m p l e , f a v o u r e d u s i n g f o l k r e m e d i e s i n c o n j u n c t i o n w i t h W e s t e r n m e d i c i n e , b u t l e f t a s p a n o f t i m e i n b e t w e e n t a k i n g b o t h m e d i c i n e s . I n f o r m a n t s w e re t h e n f a c e d w i t h t h e d i l e m m a o f f o l l o w i n g t h e d o c t o r s ' o r d e r s v e r s u s d o i n g what t h e y c o n s i d e r e d b e s t f o r t h e m s e l v e s . As a r e s u l t , i n f o r m a n t s o f t e n p l a y e d t h e e x p e c t e d r o l e o f p a t i e n t s when c o n f r o n t e d b y p r o f e s s i o n a l d o c t o r s when i n f a c t , t h e y made c h o i c e s b y t h e m s e l v e s w i t h r e g a r d t o t h e i r own h e a l t h . R: Do y o u l i s t e n t o what he s a y s t h e n ? I : Of c o u r s e I d o . I f y o u d o n ' t , y o u w o u l d n ' t g e t b e t t e r . R: So y o u f o l l o w w h a t e v e r he s a y s ? I : You d o n ' t f o l l o w e v e r y t h i n g . I t d e p e n d s on w h e t h e r y o u b e l i e v e what he s a y s . 64 R: DO y o u t e l l t h e w e s t e r n d o c t o r t h e n t h a t t h e r e a r e some t h i n g s t h a t y o u d o n ' t b e l i e v e I n ? I : You c a n ' t do t h a t ! He i s t r y i n g t o c u r e y o u ! R: Why c a n ' t y o u t e l l h i m? I : I f I t e l l h i m , he w o u l d s a y , "You d o n ' t b e l i e v e i n me." The o n l y t h i n g i s i f i t ( b l o o d s u g a r ) g o e s up o r down, he w o u l d t e l l y o u . When i n f o r m a n t s made h e a l t h d e c i s i o n s i n t h e c o n t e x t o f t h e i r d a l l y l i v e s t h a t were d i f f e r e n t t h a n what w e s t e r n m e d i c a l d o c t o r s p r e s c r i b e d , i n f o r m a n t s went t o g r e a t l e n g t h s t o c o n c e a l what t h e y d i d f r o m t h e d o c t o r s . R e a s o n s f o r n o t t e l l i n g were many and v a r i e d . One i n f o r m a n t , who was t a k i n g W e s t e r n a s w e l l a s C h i n e s e m e d i c i n e , w o u l d n o t t e l l h e r W e s t e r n p r o f e s s i o n a l d o c t o r s h e was t a k i n g b o t h k i n d s o f m e d i c i n e . R: So d i d y o u t e l l y o u r w e s t e r n d o c t o r y o u a r e t a k i n g C h i n e s e m e d i c i n e a l s o ? I : No. Why w o u l d I t e l l h i m ? He w o u l d p r o b a b l y s c o l d me. I am a f r a i d t h e W e s t e r n m e d i c i n e and t h e C h i n e s e m e d i c i n e may n o t be c o m p a t i b l e w i t h e a c h o t h e r . Many i n f o r m a n t s t o o k b o t h W e s t e r n a n d C h i n e s e m e d i c i n e s , b u t l e f t a s p a n o f t i m e i n b e t w e e n t a k i n g b o t h m e d i c i n e s . T h e y e x p l a i n e d t h a t t h e y d i d n o t t e l l t h e i r W e s t e r n p r o f e s s i o n a l d o c t o r t h e y were a l s o t a k i n g C h i n e s e m e d i c i n e b e c a u s e t h e i r d o c t o r s w o u l d d i s a p p r o v e o f t h e i r a c t i o n s . T h e y p e r c e i v e d t h a t W e s t e r n p r o f e s s i o n a l d o c t o r s c o n s i d e r e d W e s t e r n a n d C h i n e s e m e d i c i n e s t o be i n c o m p a t i b l e w i t h e a c h o t h e r . O t h e r s who saw C h i n e s e f o l k d o c t o r s k e p t I t a s a s e c r e t f r o m W e s t e r n p r o f e s s i o n a l d o c t o r s b e c a u s e t h e y p e r c e i v e d i t a s w r o n g f u l t o t a k e b o t h m e d i c i n e s . 65 I: I see Chinese ( f o l k ) d o c t o r s a l s o , but don't t e l l the do c t o r s (Western p r o f e s s i o n a l d o c t o r s ) . R: Why i s i t important not to t e l l the d o c t o r s ? I: Because i t Is not r i g h t t o see both types of d o c t o r s . Even when informants followed Western medical regimes f a i t h f u l l y but a l s o took Chinese f o l k medicine, they c o n s i d e r e d themselves to be noncompliant with Western medical d o c t o r s , or they thought they betrayed them. Many informants s t r e s s e d t h a t they wished to conceal from Western p r o f e s s i o n a l d o c t o r s t h a t they were a l s o s e e i n g Chinese f o l k d o c t o r s . T h i s was because they wished to maintain a good r e l a t i o n s h i p with the Western p r o f e s s i o n a l doctor as they may need t h e i r h elp i n the f u t u r e . R: When you take Chinese medicine, do you t e l l the Western doct o r you are t a k i n g i t ? I: No! ( r a i s e d v o i c e ) I f you t e l l those Western d o c t o r s , they wouldn't see you anymore! Some informants p e r c e i v e d Western p r o f e s s i o n a l d o c t o r s as h e s i t a n t t o accept what f o l k medicine o f f e r e d . Informants were, t h e r e f o r e , r e l u c t a n t to inform these Western p r o f e s s i o n a l d o c t o r s t h a t they were t a k i n g both Western and Chinese medicine. I: When I went t o ask Dr. M (about f o l k m e d i c i n e ) , he s a i d , "We don't have t h i n g s l i k e t h a t . " He answered me l i k e t h a t as a d o c t o r . He wouldn't t a l k about these t h i n g s . Informants a l s o concealed from Western p r o f e s s i o n a l d o c t o r s the f a c t t h a t they were t a k i n g both Chinese f o l k and western medicines f o r other reasons. Some informants were a f r a i d t h a t once these p r o f e s s i o n a l d o c t o r s found out they were t a k i n g both 66 types of medicine, they would be offended and/or would r e f u s e to g i v e t h e i r c l i e n t s f u r t h e r h e l p . I: How about the Chinese d o c t o r ? C: I a l s o ask him t o come. I don't t e l l him (Western d o c t o r ) . I: Why's t h a t ? C: You can't mix those two t h i n g s t o g e t h e r . I f I t e l l him, he would get mad a t me. Then i f he wouldn't come, I'd be dead J T h e r e f o r e , although informants i n d i c a t e d t h a t Western p r o f e s s i o n a l d o c t o r s would disapprove of t h e i r t a k i n g both Chinese and Western medicines, they s t i l l took both medicines fo r t h e i r own good and l e f t a span of time between t a k i n g both medicines. In order t o r e t a i n a good r e l a t i o n s h i p with Western p r o f e s s i o n a l d o c t o r s , informants would not t e l l these d o c t o r s they were t a k i n g both medicines. Under these circumstances, although i t was v i t a l f o r Western p r o f e s s i o n a l d o c t o r s to know what medicines t h e i r p a t i e n t s were t a k i n g , they might never g a i n access to t h i s i n f o r m a t i o n . At the same time, informants might never get the o p p o r t u n i t y to l e a r n about the dangers of t a k i n g c e r t a i n types of medicines together i f they d i d not t e l l i n the f i r s t p l a c e . Despite a l l these c o n f l i c t i n g s i t u a t i o n s informants were faced with, an informant d e s c r i b e d the p a t i e n t ' s u l t i m a t e r e s p o n s i b i l i t y t o make d e c i s i o n s about what was " r i g h t " f o r him or her i n the c o n t e x t of d a i l y l i f e . R: How about a p a t i e n t ' s r o l e ? I: I t i s to take care of y o u r s e l f . I f you eat the wrong t h i n g s , or do the wrong t h i n g s , i f you hurt y o u r s e l f , 67 t h a t ' s no good. You have to take good care of y o u r s e l f . That depends on each person's q u a l i t i e s and h i s p e r s o n a l i t y . R: You are s a y i n g t h a t I t i s the person's own r e s p o n s i b i l i t y to take care of h i m s e l f ? C: Of course i t i s h i s own r e s p o n s i b l i t y . That l i f e i s your own! I f you wanted to jump o f f a b u i l d i n g , you can. But a f t e r jumping, whether you are s t i l l a l i v e or dead i s your own b u s i n e s s . You have to take care of y o u r s e l f . Informants were a l s o asked about t h e i r c o n t a c t with nurses. Although seven of the nine c l i e n t s r e c e i v e d r e g u l a r h e l p from community h e a l t h nurses, and a l l have had p r e v i o u s c o n t a c t with nurses i n the h o s p i t a l , few informants i n d i c a t e d they had any p e r s o n a l c o n t a c t with nurses. Informants s a i d nurses have a job to do and o f t e n d e s c r i b e d nurses i n terms of c o n c r e t e , f u n c t i o n a l r o l e s l i k e g i v i n g i n j e c t i o n s or g i v i n g m e d i c a t i o n s . C: Nurses keep the p a t i e n t h e a l t h y . But I don't t a l k w ith them. They got a job to do. Another informant d e s c r i b e d her impression of nurses i n a s i m i l a r way. I: How d i d you f i n d the nurses? C: They were n i c e , but they're not there to chat with you. Once they f i n i s h t h e i r job, t h e y ' l l be on t h e i r way. I o n l y c a l l e d them when I needed water or tea to take the p i l l s . Other informants have d e s c r i b e d nurses as s o c i a b l e and f r i e n d l y , but were seldom a b l e to i d e n t i f y nurses' p r o f e s s i o n a l r o l e s . V 68 c : I h a v e a h a r d t i m e r e m e m b e r i n g e a c h one of t h e m s e p a r a t e l y . But they are a l l v e r y s o c i a b l e and easy t o get acquainted with. To conclude, informants o f t e n sought help from people belonging to the p r o f e s s i o n a l domain when they i d e n t i f i e d themselves as " s i c k " . Western p r o f e s s i o n a l d o c t o r s were most o f t e n c o n s u l t e d as they were c o n s i d e r e d experts i n the treatment of d i s e a s e , c o n f l i c t s arose, however, when informants were expected to comply with treatments p r e s c r i b e d by p r o f e s s i o n a l s , while on the other hand, they bore the u l t i m a t e r e s p o n s i b i l i t y f o r d e c i d i n g what was best f o r t h e i r l i v e s . In order t o maintain a good r e l a t i o n s h i p with Western p r o f e s s i o n a l d o c t o r s , informants o f t e n concealed from them simultaneous use of other methods t o manage t h e i r i l l n e s s . When Informants were asked about t h e i r c o n t a c t with nurses, few rec o g n i z e d the r o l e nurses played i n h e l p i n g them manage t h e i r i l l n e s s e s . In f a c t , informants o f t e n p e r c e i v e d the nurse's r o l e t o p a r a l l e l the Western p r o f e s s i o n a l d o c t o r ' s r o l e . That i s , they saw nurses work, l i k e t h a t of Western p r o f e s s i o n a l d o c t o r s ' , as treatment and d i s e a s e - o r i e n t e d . F o l k • As mentioned b e f o r e , f o l k d o c t o r s were o f t e n c o n s u l t e d when informants were "not s i c k " t o prevent i l l n e s s and/or m a i n t a i n h e a l t h . Besides the p r o f e s s i o n a l domain, informants a l s o u t i l i z e d the f o l k domain when they were " s i c k " . Within the f o l k domain, Chinese f o l k d o c t o r s were c o n s u l t e d as informants r e c o g n i z e d t h a t they had a thorough understanding of c u l t u r a l concepts unique to Chinese c l i e n t s . Chinese f o l k d o c t o r s were f r e q u e n t l y c o n s u l t e d f o r c u l t u r a l l y - d e f i n e d i l l n e s s e s l i k e " f i r e burning i n s i d e a person". They were a l s o 69 c o n s i d e r e d to have d i s t i n c t methods of d e t e c t i n g i l l n e s s e s . One method, mentioned by informants, was " l i s t e n i n g t o the p u l s e " . T h i s was c a r r i e d out by p a l p a t i o n of the p u l s e , while paying extremely c l o s e a t t e n t i o n t o the c h a r a c t e r i s t i c s of the p u l s a t i o n s . I: I f you have f i r e i n your h e a r t , the do c t o r (Chinese f o l k d o c t o r ) can t e l l by l i s t e n i n g to your p u l s e . Those d o c t o r s can d e t e c t t h i n g s v e r y a c c u r a t e l y ! They can t e l l what type of s i c k n e s s you have by l i s t e n i n g to your p u l s e ! They are v e r y smart. They have a l o t of exp e r i e n c e . They know what to do by l i s t e n i n g to your p u l s e . Western d o c t o r s don't know how to do t h a t . They (Western d o c t o r s ) can o n l y t e l l i f your pulse i s r a p i d , and g i v e you some medicine. In c o n t r a s t , some informants p e r c e i v e d t h a t Western p r o f e s s i o n a l d o c t o r s o n l y attended t o p a t i e n t s ' e x t e r n a l symptoms. I: The doct o r (Western d o c t o r ) cannot h e l p me much. When he sees me, he l i s t e n s to my p u l s e . I f my pulse i s a l r i g h t , then t h a t ' s i t . As f o r my headaches, he cannot see them. I have been to the h o s p i t a l to check f o r headaches, but they cannot see an y t h i n g . Western p r o f e s s i o n a l d o c t o r s were p e r c e i v e d t o be d i s e a s e -o r i e n t e d and e f f e c t i v e In t r e a t i n g obvious p h y s i c a l symptoms, whereas Chinese d o c t o r s were p e r c e i v e d t o have a thorough understanding of what was s u i t a b l e f o r Chinese people. Hence, when Informants were " s i c k " , they p r i m a r i l y c o n s u l t e d with Western p r o f e s s i o n a l d o c t o r s t o t r e a t t h e i r d i s e a s e . Chinese f o l k d o c t o r s were a l s o c o n s u l t e d when informants p e r c e i v e d t h a t 70 they understood Chinese h e a l t h concepts and c u l t u r a l l y - d e f i n e d i l l n e s s e s t h a t might be incomprehensible t o Western p r o f e s s i o n a l d o c t o r s . Although informants p r i m a r i l y used Western p r o f e s s i o n a l d o c t o r s t o t r e a t t h e i r d i s e a s e , Chinese f o l k d o c t o r s were c o n s u l t e d when t h e i r i l l n e s s was p e r c e i v e d t o be " c u l t u r e -s p e c i f i c " . Informants a l s o used i n f o r m a t i o n from these f o l k d o c t o r s t o s u s t a i n h e a l t h . The p e r c e p t i o n s of the d i f f e r i n g competencies of western p r o f e s s i o n a l d o c t o r s and Chinese f o l k d o c t o r s t h e r e f o r e Influenced informants' h e l p - s e e k i n g pathways. Each k i n d of doctor would be sought out depending on what s t a t e of i l l n e s s informants i d e n t i f i e d f o r themselves. Informants a l s o p e r c e i v e d t h a t the treatments o f f e r e d by both types of d o c t o r s were d i f f e r e n t . Chinese f o l k d o c t o r s were o f t e n sought as treatments o f f e r e d by them were p e r c e i v e d t o be more "compatible" with Chinese c l i e n t s . Informants not o n l y b e l i e v e d t h a t "compatible medicines" c o u l d h e l p them t r e a t t h e i r i l l n e s s , but they a l s o b e l i e v e d these medicines c o u l d make t h e i r d i s e a s e " l i g h t e r " . That i s , t a k i n g "compatible medicines" would serve a maintenance f u n c t i o n p l u s reduce the s e v e r i t y of t h e i r i l l n e s s . R: You s a i d t h a t i f you see the Chinese d o c t o r , your d i a b e t e s may get l i g h t e r ? I: I f the medicine you take i s "compatible" with you, then your d i a b e t e s can get " l i g h t e r " . On the other hand, Western medicine, although c o n s i d e r e d e f f e c t i v e f o r the treatment of i l l n e s s , was p e r c e i v e d to cause weakened h e a l t h i f taken i n excess. I: I don't know what happens to other people. When I 71 take too much of i t (Western medicine), I have a s c a t t e r e d f e e l i n g . I f e e l d i z z y , and t h a t ' s not ve r y good. T h e r e f o r e , t a k i n g e i t h e r Chinese or Western medicine was b e l i e v e d to b r i n g d i f f e r e n t outcomes. Chinese medicine was used as informants c o n s i d e r e d i t t o be "compatible" with t h e i r b o d i e s . They a l s o b e l i e v e d i t served to maintain h e a l t h and reduce the s e v e r i t y of t h e i r I l l n e s s e s . Western medicine, on the other hand, was b e l i e v e d to be e f f e c t i v e i n t r e a t i n g t h e i r i l l n e s s e s but c o u l d not be taken In excess as I t may weaken t h e i r h e a l t h . As informants h e l d such d i f f e r e n t views of both types of treatment, i t i s e s s e n t i a l f o r western h e a l t h p r o f e s s i o n a l s to e x p l o r e and understand these views when p r e s c r i b i n g medical regimens. As both types of medicines have t h e i r own u t i l i t y , informants o f t e n took Chinese f o l k medicine i n c o n j u n c t i o n with Western medicine to optimize h e a l t h , but l e f t a span of time between t a k i n g both medicines, i n t h a t way, informants p e r c e i v e d they took advantage of both medicines. They u t i l i z e d Western medicine t o t r e a t t h e i r i l l n e s s e s w h i l e , a t the same time, they took Chinese medicine to maintain t h e i r h e a l t h and reduce the s e v e r i t y of t h e i r i l l n e s s e s . In a d d i t i o n , as informants p e r c e i v e d t h a t Western p r o f e s s i o n a l d o c t o r s disapproved of t h e i r t a k i n g Chinese f o l k medicine, informants o f t e n concealed from Western p r o f e s s i o n a l d o c t o r s t h a t they were t a k i n g both medicines. popular, informants a l s o sought h e l p from the popular domain when they were " s i c k " , w i t h i n the popular domain, informants sought h e l p from f a m i l y members, peers, as w e l l as 72 g o v e r n m e n t a l and s o c i a l a g e n c i e s . Rather t h a n a c t i n g as experts on h e a l t h matters l i k e p r o f e s s i o n a l or f o l k d o c t o r s , people from the popular domain a c t e d as sources of support when informants were " s i c k " . They would a s s i s t informants when they needed to to go to t h e i r d o c t o r s , would help with d a i l y chores, or be persons t o d i s c u s s t h i n g s w i t h . Informants, t h e r e f o r e , used these supports i n d a i l y management of t h e i r i l l n e s s e s . support from f a m i l y members, o f the nine informants i n t e r v i e w e d , three l i v e d with t h e i r f a m i l i e s and/or had c l o s e c o n t a c t with t h e i r c h i l d r e n . One informant d e s c r i b e d how her daughter helped her to buy g r o c e r i e s and medicine. I: The c h i l d r e n are your own. That should be expected of them. When they have time, they would come. When they have time, even i f you don't say an y t h i n g , they would come here, i t was c o l d and r a i n y , she (daughter) came to h e l p me buy g r o c e r i e s . . . L i k e l a s t n i g h t , I had t o get some eye ointment. Because the doctor wrote the p r e s c r i p t i o n on a p i e c e of paper, she had t o come t o pick i t up. So she got the eye ointment f o r me. Another informant d e s c r i b e d how her son and daughter-in-law accompanied her when she v i s i t e d her d o c t o r . I: T h e r e f o r e , I need h e l p , f o r example, when I c r o s s the s t r e e t . Otherwise, i f I'm i n Chinatown and i t ' s so busy down t h e r e , I c o u l d n ' t manage on my own. So u s u a l l y my daughter-in-law goes with me to see the d o c t o r , and my son d r i v e s me t h e r e . The kind of a s s i s t a n c e Informants s a i d they r e q u i r e d was p r a c t i c a l types of help f o r day-to-day s u r v i v a l . One informant d e s c r i b e d t h i s c l e a r l y . 73 I: I t does not matter whether they ( c h i l d r e n ) are c a r i n g or not. The most important t h i n g i s t h a t they h e l p met...what's the use of c a r i n g ? What use i s i t ? You have t o come and h e l p . L i k e I have t o buy c h i c k e n d r u m s t i c k s , and p i e c e s of c h i c k e n to make soup. She(daughter) would buy them f o r me, c l e a n the c h i c k e n , get r i d of the s k i n , and cut i t up f o r me. other informants who l i v e d alone seldom had c o n t a c t with any f a m i l y members nor r e c e i v e d help from them. One informant even r e f u s e d t o move to Taiwan where her sons were, f o r f e a r she might be a burden to them. C: My son i n Taiwan has asked me t o r e t u r n . I would r a t h e r not. I: Why? C: I t ' s v e r y troublesome t o go back. My sons a l l work. An o l d l a d y l i k e me would be too troublesome f o r them. Wouldn't i t be b e t t e r i f they can go to work f e e l i n g a t peace? An o l d l a d y l i k e me, I might t a l k and nag too much. So I say, "I don't want t o t r o u b l e o t h e r s . " . Informants who d i d not have c h i l d r e n to help them expressed t h e i r need t o have a constant source of support t o c o n s u l t with r e g a r d i n g d a i l y matters when they were " s i c k " . One informant s a i d t h a t having constant support l i k e t h a t would be l i k e having your own f a m i l y member pr e s e n t . C: I would l i k e t o have somebody who would see how my s i c k c o n d i t i o n I s . T h i s person would d i s c u s s with me whether I need t o go t o the h o s p i t a l . I f t h e r e ' s n o t h i n g much the matter, then he/she would t e l l me i t ' s a l r i g h t t o s t a y a t home. That's the kind of h e l p I 74 would l i k e , nothing more. I would r e a l l y l i k e to f i n d somebody whom I c o u l d d i s c u s s t h i n g s w i t h . That would be v e r y n i c e , but t h i s k i n d of people i s v e r y hard t o f i n d . Having somebody l i k e t h a t would be l i k e having your own f a m i l y member pr e s e n t . Informants who had f a m i l y members t o t u r n t o f o r support made use of t h e i r h elp when they were " s i c k " . Others who d i d not have h e l p from f a m i l y members expressed the need t o have persons l i k e f a m i l y members t o be present and a c t as constant sources of support. Support from peers. Besides l a c k i n g support from f a m i l y members, informants seldom r e c e i v e d help from peers. Contact with peers o n l y i n c l u d e d a t t e n d i n g s o c i a l events with them, or g r e e t i n g them on the s t r e e t s . One informant e x p l a i n e d t h a t she seldom u t i l i z e d peer support f o r f e a r i n f o r m a t i o n about her may be p u b l i c i z e d . She p e r c e i v e d t h a t m a i n t a i n i n g c o n f i d e n t i a l i t y of i n f o r m a t i o n was e s p e c i a l l y important f o r her as she r e s i d e d i n a d e n s e l y occupied apartment b u i l d i n g with two hundred other s e n i o r s . C: L i k e t h i s b u i l d i n g , i t ' s a l l occupied by o l d people. These o l d people have a l o t of time, and some have v e r y good memory! Once you t e l l them something, they absorb e v e r y t h i n g i n s i d e t h e i r b r a i n ! And because they have time, they go here and there and t a l k about what you t o l d them. Other informants s t a t e d t h a t t h e i r f r i e n d s , who were a l l e l d e r l y l i k e h e r s e l f , c o u l d not o f f e r much help anyway. C: Because a l l my f r i e n d s are o l d l a d i e s . Old l a d i e s cannot even c a l l f o r help because they can't speak 75 E n g l i s h . So i t ' s v e r y troublesome. Thus, although many informants had easy a c c e s s i b i l i t y t o other s e n i o r s , they seldom i d e n t i f i e d them as sources of support. S c a r c i t y of su p p o r t s . As a r e s u l t , many informants ended up with l i t t l e f a m i l y and peer support, but managed t h e i r i l l n e s s on t h e i r own with l i t t l e h e l p a v a i l a b l e . With the s c a r c i t y of f a m i l y and peer support, many informants d i s c l o s e d t h e i r f e a r s of i n c r e a s e d dependence as t h e i r h e a l t h d e t e r i o r a t e d with i n c r e a s i n g age. C: I hope I would not have t o ask people f o r h e l p . I f my f e e t cannot walk and I have to r e l y on people f o r help, t h a t would be ve r y p i t i f u l . The most important t h i n g i s to have your eyes, your arms, and your f e e t . Although t h e r e i s somebody who helps me wash my c l o t h e s , I s t i l l do t h i n g s with my arms so t h a t I can get some p r a c t i c e . Many informants a l s o d e s c r i b e d t h e i r d i s c o m f o r t with having t o ask f o r h e l p . They a l s o expressed t h e i r f r u s t r a t i o n s i f help was not a v a i l a b l e when they needed i t . I: I f I need hel p , I would have to ask f o r h e l p . What I can do myself, I would do i t myself. I f I can't do i t , I would have to ask. You are young. You have never been o l d and have f e l t what i t ' s l i k e . I f you can't get he l p , then i t ' s v e r y d i f f i c u l t and f r u s t r a t i n g . With the s c a r c i t y of supports, informants expressed both f e e l i n g s of fe a r and f r u s t r a t i o n . They f e a r e d t h a t t h e i r need f o r h e l p might i n c r e a s e . At the same time, they shared f e e l i n g s of f r u s t r a t i o n when, even i f they asked f o r help, help might not be a v a i l a b l e . 76 Support from governmental and/or s o c i a l a g e n c i e s , informants mostly sought h e l p from the p r o f e s s i o n a l and f o l k domains f o r a d v i c e on h e a l t h matters when they were " s i c k " . On the other hand, informants turned t o the popular domain f o r support. As d e s c r i b e d by informants, one type of support they were l o o k i n g f o r was p r a c t i c a l h e l p . In t h a t way, they might use people's a s s i s t a n c e i n order to cope more e a s i l y with s i c k n e s s e p i s o d e s . Due to the l a c k of f a m i l y and peer support a v a i l a b l e , Informants o f t e n r e s o r t e d to help by governmental or s o c i a l s e r v i c e agencies f o r p r a c t i c a l h e l p t o a i d them i n day-to-day l i v i n g . One informant was t h a n k f u l t h a t the Canadian government helped her meet her b a s i c needs. I: The Canadian government i s good to us ( s e n i o r s ) and g i v e s us money to support us. I f they d i d not support us, what would we eat? We might as w e l l jump i n t o the ocean and k i l l o u r s e l v e s . As long as we have enough to e a t , enough to d r i n k , and are a b l e to l i v e , we do not have too many demands. Homemakers, sent by s o c i a l s e r v i c e a g e n c i e s , o f t e n played an important p a r t i n the informants' l i v e s . Homemakers on average v i s i t e d the informants' homes once or twice a week t o help with d a l l y c hores. F r e q u e n t l y , f o r informants who l i v e d a l o n e , homemakers were t h e i r o n l y c o n t a c t with the o u t s i d e world. I: I had to have an o p e r a t i o n f o r my c a t a r a c t s , and the h o s p i t a l nurses took care of me. Then they sent someone to take care of me a t home. I t o l d my d o c t o r t h a t I had nobody to take care of me, then he sent someone here. I do not have much money, and I do not have much to do. I 77 r e l y on t h a t person to come and help me. The lack of f a m i l y and peer support was e s p e c i a l l y f e l t when informants were asked what they would do i f something s e r i o u s happened i n t h e i r l i v e s . Again, informants turned t o governmental and s o c i a l agencies as a l a s t r e s o r t f o r h e l p . R: What happens when you are not f e e l i n g w e l l ? I: He(doctor) t o l d me t h a t i f there i s something wrong, then I can c a l l a p l a c e , and they w i l l send an ambulance to get me. R: So i f something happened, you would c a l l t h a t p l a c e ? I: Yes. L e t me see now, t h i s Is the place (The Informant took out a s m a l l s l i p of paper with the name of a h o s p i t a l w r i t t e n on i t . ) . He(doctor) t o l d me to go to t h i s p l a c e . But he has not even w r i t t e n down the phone number. Then how can I phone? (The informant does not read nor speak E n g l i s h . ) He t o l d me t o get some kind of c a r , or an ambulance, and then people w i l l n o t i f y him. Another informant expressed t h a t a l l she was a s k i n g f o r was t h a t her b a s i c needs be met adequately, nothing more. I: The government has a s s i g n e d me a servant(homemaker). The s e r v a n t comes here once a week. She helps me wash the f l o o r s , and the bathtub. As f o r even more s e r i o u s t h i n g s , a more s e r i o u s t h i n g t h a t may happen i s i f I d i e . So i f I d i e , i t doesn't matter s i n c e I'd be dead. Due to the lack of support from f a m i l y members and peers, informants o f t e n sought h e l p from governmental and/or s o c i a l s e r v i c e a g e n c i e s . Informants adopted pragmatic a t t i t u d e s t h a t these agencies were used to help them meet t h e i r b a s i c needs of l i v i n g . 78 Informants' response to the s c a r c i t y of s u p p o r t s . Despite the absence of support from loved ones or s i g n i f i c a n t o t h e r s , and t h e i r need to r e s o r t to governmental and/or s o c i a l a gencies f o r h e l p , informants v o i c e d t h e i r acceptance of the s i t u a t i o n as i t e x i s t e d . Many adopted the a t t i t u d e t h a t they were o l d anyway, t h a t they would not l i v e much lo n g e r . Informants had d i f f e r e n t ways of coping with t h e i r d i a b e t i c c o n d i t i o n and with o l d age. One informant coped by doing what he c o u l d f o r h i s s i t u a t i o n and by not worrying. I: I say to myself, "Do what t h i n g you can do! Don't worry, worry you c o u l d n ' t h e l p ! Only hurt y o u r s e l f i f you worry. Another informant s t a t e d he coped by adapting h i s l i f e s t y l e t o h i s h e a l t h c o n d i t i o n and r e a l i z i n g h i s l i m i t a t i o n s . I : When a person gets o l d , of course i t ' s not as good as when you were young. You have to adapt your l i f e s t y l e a c c o r d i n g l y . You cannot say you want t o s t r u g g l e and eat a l o t . You cannot eat t h a t much. I f you do so, you cannot t o l e r a t e i t because of your age. What you are capable of i s what you should aim f o r . You cannot s t r e t c h your l i m i t s . S t i l l , another informant p a s s i v e l y accepted l i f e as i t was and her impending death. I: I f I don't get b e t t e r , I wouldn't mind i f I d i e r i g h t away. I ' l l j u s t c l o s e my eyes and pass away. Thus, most informants adopted an a t t i t u d e of p a s s i v e acceptance i n l i g h t of the s i t u a t i o n and t h e i r age. To summarize, informants c o l l e c t e d i n f o r m a t i o n from both the 79 popular and f o l k domains when they d e f i n e d themselves as "not s i c k " . On the other hand, informants turned t o the p r o f e s s i o n a l , f o l k , and popular domains when they decided they were " s i c k " . People from the p r o f e s s i o n a l and f o l k domains were o f t e n sought f o r advic e r e g a r d i n g h e a l t h matters. On the other hand, people from the popular domain were sought by informants f o r support when they were " s i c k " i n order t o cope with d a i l y management of t h e i r I l l n e s s . Due t o the lack of f a m i l y and peer support i n the popular domain, informants o f t e n r e s o r t e d t o h e l p from governmental and/or s o c i a l s e r v i c e a g e n c i e s . Although f r u s t r a t e d with the lack of he l p a v a i l a b l e and faced with the t h r e a t of i n c r e a s e d dependence, many informants adopted an a t t i t u d e of acceptance of what t h e i r h e a l t h s i t u a t i o n and o l d age might b r i n g . I n f o r m a n t s ' i n f o r m a t i o n C o l l e c t i n g Informants c o l l e c t e d i n f o r m a t i o n from the a v a i l a b l e h e a l t h care r e s o u r c e s before they made d e c i s i o n s on how to manage t h e i r c o n d i t i o n . At t h i s stage of i n f o r m a t i o n c o l l e c t i n g , informants accumulated i n f o r m a t i o n from the h e a l t h care r e s o u r c e s they had chosen t o u t i l i z e . People from the p r o f e s s i o n a l , f o l k , and popular domains represented source of i n f o r m a t i o n used by informants as they made h e a l t h d e c i s i o n s and chose h e a l t h a c t i o n s . Informants' A n a l y s i s of Information from Health Care Resources F o l l o w i n g c o l l e c t i o n of i n f o r m a t i o n , Informants then went through a complex decision-making process t o analyze the i n f o r m a t i o n c o l l e c t e d . In t h i s a n a l y s i s phase, Informants analysed i n f o r m a t i o n c o l l e c t e d t o a s c e r t a i n i f i t was " r i g h t " . One informant emphasized t h i s p o i n t . 8 0 I: The d o c t o r s i n the h o s p i t a l g i v e you some i n f o r m a t i o n , a n d s o d i d t h e b o o k s . A n d y o u t h i n k a b o u t i t y o u r s e l f to t h i n k i f i t ' s the r i g h t t h i n g to do. You have to be c a r e f u l . The a n a l y s i s of what i n f o r m a t i o n was " r i g h t " was determined by c e r t a i n c r i t e r i a . During the a n a l y s i s process, i n f o r m a t i o n d i d not n e c e s s a r i l y have to f i t a l l c r i t e r i a . However, the more c r i t e r i a the i n f o r m a t i o n met, the more l i k e l y i t would be adopted. These c r i t e r i a may be grouped i n t o f i v e c a t e g o r i e s . The c r i t e r i a s e l e c t e d by informants were t h a t i n f o r m a t i o n was proven c o r r e c t , d i d not i n t e r f e r e with how informants l i v e d t h e i r d a i l y l i v e s , was based on " o r d i n a r y " and/or "common" knowledge, d i d not c o n f l i c t with p e r s o n a l , s o c i a l and c u l t u r a l v alues and b e l i e f s , and d i d not c o n f l i c t with informants' "inner sense" t h a t the i n f o r m a t i o n was " r i g h t " . Information was Proven C o r r e c t informants s a i d t h a t i n f o r m a t i o n was c o n s i d e r e d " r i g h t " I f i t has been p r e v i o u s l y proven c o r r e c t . Information was a l s o c o n s i d e r e d " r i g h t " i f informants found the i n f o r m a t i o n had worked b e f o r e . One informant s t a t e d t h a t i f the i n f o r m a t i o n worked f o r somebody e l s e , he would t r y to use i t . I: I f e e l d i a b e t e s may be v e r y d i f f i c u l t t o c u r e . But i f some o l d e r man t o l d us t h a t he had d i a b e t e s before but was cured by e a t i n g something, then we might t r y I t . Another informant r e c o g n i z e d t h a t p r e v e n t i n g h e r s e l f from g e t t i n g c u t s or b l i s t e r s was the " r i g h t " t h i n g t o do. She c o n s i d e r e d t h a t i n f o r m a t i o n to be " r i g h t " a f t e r she witnessed how her f a t h e r , who had d i a b e t e s , had d i f f i c u l t y h e a l i n g h i s 81 wounds. T h e r e f o r e , Information was a l s o c o n s i d e r e d " r i g h t " i f informants witnessed i t work b e f o r e . I: When I was with my f a t h e r i n the h o s p i t a l , I heard the d o c t o r s and nurses there say t h a t i t i s v e r y hard t o heal wounds...So I am very c a r e f u l with my hands, my f e e t , everywhere so t h a t I w i l l not have b l i s t e r s . . . B e c a u s e I saw t h a t spot t h a t he had and how i t r o t t e d , I am v e r y c a r e f u l now so t h a t I w i l l not hurt my hands. Information was a l s o c o n s i d e r e d " r i g h t " when informants experimented with what they have l e a r n t and have found t h a t the i n f o r m a t i o n was u s e f u l . I: Then you would go and see him (Chinese d o c t o r ) , and you would get another package of t e a . You u s u a l l y get two packages of t e a . You t r y the f i r s t package and see what happens. I f you t h i n k , " I t hasn't worked, my heart f e e l s uncomfortable." Then you wouldn't go back to him...After you have had one package of Chinese medicine, i f your f e e l i n g s are uncomfortable, you might a l s o t r y a second package of t e a . You might f e e l b e t t e r a f t e r the second package. A f t e r I have taken two packages, i f i t ' s b e t t e r , I would even go back and get two more packages. I might get f i v e packages. The f i r s t one i s to experiment with. Then I ' l l t r y a l i t t l e more with the second package. The Western doctor i s the same. They don't dare to say, "You have t h a t d i s e a s e . I ' l l g i v e you t h i s medicine t o take. " Even the Western doct o r i s c a r e f u l to l e t you t r y I t f i r s t , r i g h t ? i n f o r m a t i o n was a l s o c o n s i d e r e d " r i g h t " when d i f f e r e n t sources 82 of i n f o r m a t i o n s a i d the same t h i n g . In t h a t way, as some i n f o r m a n t s thought, i n f o r m a t i o n was c o n f i r m e d t o be " r i g h t " . I: J u s t l i k e I have a nephew. He t o l d us the most important t h i n g t o do with regards t o d i a b e t e s i s to be c a u t i o u s with eating...Our doctor a l s o t o l d me to do that...Even from our b a s i c knowledge, we understand t h a t we should a v o i d foods with too much f a t . i n f o r m a t i o n d i d n o t i n t e r f e r e with i n f o r m a n t s ' p a l l y L i v e s Another major c r i t e r i o n was t h a t i n f o r m a t i o n was a l s o c o n s i d e r e d " r i g h t " when i t d i d not I n t e r f e r e g r e a t l y with how informants l i v e d t h e i r d a i l y l i v e s . Informants would f o l l o w what the i n f o r m a t i o n suggested provided t h a t i t was easy to a d m i n i s t e r . R: Why would you choose the Western do c t o r over the Chinese doctor? I: I t ' s convenient t o see a w e s t e r n d o c t o r . The p i l l s and medicine that they g i v e out are convenient t o take. Conversely, c a r r y i n g out the sugg e s t i o n s should not be too "troublesome". Informants p r e f e r r e d treatment regimes t h a t were r e l a t i v e l y easy t o c a r r y out. I: So I went to see the Chinese d o c t o r . A f t e r s e e i n g him, he asked me t o b o i l some medicine. So when I was doing t h a t , I s a t on my bed, l e a n i n g a g a i n s t the w a l l , and I dozed o f f . When I woke up, I jumped up and went to have a look a t the medicine. There was s t i l l a l i t t l e water l e f t . . . B u t because b o i l i n g medicine i s so troublesome, I d i d n ' t see t h a t Chinese d o c t o r anymore. Another requirement was t h a t what the i n f o r m a t i o n suggested was not too expensive to c a r r y out. 83 I: I f the t h i n g i s not r e a l l y high p r i c e d , then O.K., I t r y i t . Information was Based on "Ordinary" or "Common" Knowledge An important c r i t e r i o n informants c o n s i d e r e d was t h a t the i n f o r m a t i o n was b a s i c and commonly known. T h e r e f o r e , the i n f o r m a t i o n made sense to Informants. R: Have you f o l l o w e d what he (Western medical d o c t o r ) s a i d ? I: He s a i d t h i n g s t h a t were very common. He s a i d I have to be c a r e f u l when I e a t . Otherwise, the s i c k n e s s would keep on coming...We l i s t e n to him because t h a t sounds r i g h t . Even from our b a s i c knowledge, we understand t h a t we should a v o i d foods with too much f a t . There were a l s o " o r d i n a r y " remedies t h a t were commonly used t o improve and maintain h e a l t h f o r the f a m i l y . Remedies l i k e these were t h e r e f o r e e a s i l y accepted and f r e q u e n t l y used. I: C e r t a i n t h i n g s , our whole f a m i l y can eat i t . Then i t ' s no problem. These are t h i n g s l i k e soup made with corn husks and p i g s ' pancreas. There are no b i g s i d e e f f e c t s . And o r d i n a r y t h i n g s l i k e beef shanks or c h i c k e n , usual f a m i l i e s can eat i t too. So i t ' s no b i g d e a l . F a m i l i e s f r e q u e n t l y made these " o r d i n a r y " soups and used other remedies because they c o n s i d e r e d them not harmful to t h e i r h e a l t h . I: The others are j u s t o r d i n a r y t h i n g s . They would not have b i g or harmful e f f e c t s . 84 IftfQrm.fltJ.Qn, did. n o t C o n f l i c t w U h P e r s o n a l , S o c i a l , a n d C u l t u r a l vainer! a n d B e l i e f s At the same time, Information was c o n s i d e r e d " r i g h t " when i t d i d not c o n f l i c t with p e r s o n a l , s o c i a l , or c u l t u r a l values and b e l i e f s . For example, one informant s t r o n g l y b e l i e v e d i n the "hot" and " c o l d " concepts of Chinese medicine. She a t t r i b u t e d her s i c k n e s s t o e x c e s s i v e " c o l d n e s s " . As a r e s u l t , she advocated a v o i d i n g " c o l d " foods was the " r i g h t " t h i n g to do. I: The water here i s too c o l d . So I a v o i d c o l d foods a l s o , l i k e " s a i yeung choy" (a type of v e g e t a b l e ) , and water c h e s t n u t s . Another informant r e l a t e d the importance of u s i n g i n f o r m a t i o n t h a t adhered to t r a d i t i o n a l c u l t u r a l p r a c t i c e s . In one in s t a n c e when she was h o s p i t a l i z e d , she r e f u s e d t o d r i n k i c e d water p r o v i d e d by s t a f f but had her husband b r i n g her b o i l e d water. Her r a t i o n a l e was as f o l l o w s , I: You know, t h i s i s the Chinese people's c u l t u r e , i t ' s our h a b i t s . I f I d r i n k t h e i r water, f i r s t l y I was not accustomed to I t . A l s o I was a f r a i d I might get d i a r r h e a . I was a f r a i d I might get a stomachache. Information should a l s o not c o n f l i c t with what informants have l e a r n t from t h e i r past e x p e r i e n c e s . I: I know what to eat and what not to e a t . I am not young, so I get i n f o r m a t i o n from e x p e r i e n c e . I don't go about i t b l i n d l y . I have brought up so many c h i l d r e n and g r a n d c h i l d r e n , I know ve r y w e l l what to do. 85 i n f o r m a t i o n d i d n o t c o n f l i c t w i t h i n f o r m a n t s ' " i n n e r s e n s e " t h a t i n f o r m a t i o n was " R i g h t " L a s t l y , an important c r i t e r i o n used t o determine whether i n f o r m a t i o n was " r i g h t " or not r e l i e d on informants' "Inner sense". T h i s "inner sense", as d e s c r i b e d by informants, was dependent on how informants f e l t about the i n f o r m a t i o n and whether the i n f o r m a t i o n was "compatible" with informants. Many informants have s t a t e d t h a t they determined whether i n f o r m a t i o n was " r i g h t " based on how they f e l t Inwardly. R: How would you teach other people what Information i s " r i g h t " ? I: You can't teach other people. How do you teach them, and to whom? I t i s from y o u r s e l f . I t ' s from how I f e e l . You can't d e s c r i b e i t t o other people. Another informant a l s o supported the idea t h a t people had an inner f e e l i n g t h a t the i n f o r m a t i o n was " r i g h t " . R: How do you know i f I t ' s ( i n f o r m a t i o n i s ) r i g h t or not r i g h t ? I: I t h i n k i f t h i n g s have a good reason, i f I f e e l what i t ' s s a y i n g i s r i g h t and not bad, then I f e e l i t i s r i g h t . I f i t i s r i g h t , then I f o l l o w and do what i t says. R: How do you know i f t h i n g s have a good reason? I: That depends on your own thoughts. I f you f e e l i t i s r i g h t , then i t i s r i g h t . T h i s " inner sense" of whether i n f o r m a t i o n was " r i g h t " or not " r i g h t " was a l s o determined by whether the i n f o r m a t i o n was "compatible" with informants. I: i f you t r y something, and you f i n d i t ' s compatible 86 with you, then you want t o f o l l o w i t . When i n f o r m a t i o n was not- " c o m p a t i b l e " with informants, they experienced some p h y s i c a l s e n s a t i o n s which i n d i c a t e d to them t h a t the i n f o r m a t i o n was not " r i g h t " f o r them. I: I t h i n k MSG has some e f f e c t s on your body. I f your body i s not compatible with i t , i t w i l l a f f e c t your body. You would f e e l once you eat i t t h a t your mouth t a s t e d sour and f e l t numb. And you can l o s e your a p p e t i t e . Another Informant had d i f f e r e n t p h y s i c a l s e n s a t i o n s when the food he took was not "compatible" with him. I: A person knows about what he can eat or not eat b e t t e r than a doctor can. I f you eat something, and your body i s not compatible with i t , then you have t o change...If you eat something, and you f e e l d i z z y , and your eyes get b l u r r y , then you are not compatible with i t . A f t e r Informants c o l l e c t e d i n f o r m a t i o n from the h e a l t h care r e s o u r c e s , they went through a complex process t o analyze the i n f o r m a t i o n c o l l e c t e d . The a n a l y s i s was used to a s c e r t a i n whether i n f o r m a t i o n c o l l e c t e d was " r i g h t " f o r them or not. The a n a l y s i s process was determined by f i v e c r i t e r i a . These c r i t e r i a were t h a t i n f o r m a t i o n was proven c o r r e c t , d i d not i n t e r f e r e with how informants l i v e d t h e i r d a i l y l i v e s , was based on " o r d i n a r y " and/or "common" knowledge, d i d not c o n f l i c t with the person's s o c i a l , and c u l t u r a l v a l u e s and b e l i e f s , and d i d not c o n f l i c t with informants' "inner sense" t h a t the i n f o r m a t i o n was " r i g h t " . 87 Informants' C r e a t i o n of Own Treatment Regime A f t e r s e l e c t i n g the " r i g h t " Information based on the above mentioned c r i t e r i a , informants went through a process of s y n t h e s i s whereby i n f o r m a t i o n they c o n s i d e r e d " r i g h t " was used to c r e a t e t h e i r own treatment regimes. A l l informants had unique ways of c r e a t i n g t h e i r own treatment regimes. Some of these ways w i l l be i l l u s t r a t e d below. Some informants combined both Chinese and Western methods of treatment i n managing t h e i r own I l l n e s s . They p r o f e s s e d t h a t mixing both Chinese and Western medicines was not the " r i g h t " t h i n g to do as both medicines were c o n s i d e r e d to be incompatible with each other. However, i n order t o take advantage of both Chinese and Western medicines, they took both types of medicines but allowed a span of time f o r one medicine to take i t s e f f e c t before t a k i n g the other. I: I f you take too much Western medicine, i t ' s not v e r y good. I t ' s not good f o r your h e a l t h . So you have to take some Chinese medicine to take care of y o u r s e l f . But you can't mix the Chinese medicine and Western medicine. You can't do t h a t ! When you go to see the Western d o c t o r , you take Western medicine. When you go to see the Chinese doctor and take Chinese medicine, then you should not take Western medicine... I f you have taken Chinese medicine, wait t i l l the n i g h t has passed before t a k i n g the other medicine, o t h e r s s e l e c t e d d i f f e r e n t p i e c e s of i n f o r m a t i o n t o use. At the same time, informants c o n t i n u a l l y experimented with t h i s i n f o r m a t i o n . The g o a l of experimentation was t o f i n d out e x a c t l y which i n f o r m a t i o n s e l e c t e d was e f f e c t i v e i n m a i n t a i n i n g 88 n o r m a l b l o o d a n d u r i n e r e s u l t s . One i n f o r m a n t - e x p l a i n e d how s h e e x p e r i m e n t e d w i t h f o o d s that-had " c o l d " a n d "bo" f a c t o r s i n o r d e r t o m a i n t a i n n o r m a l b l o o d s u g a r r e s u l t s . She e x p e r i m e n t e d w i t h f o o d s t h a t h a d "bo" f a c t o r s b e c a u s e t h e s e f o o d s were b e l i e v e d t o be " h o t " p l u s p o s s e s s e d q u a l i t i e s t h a t " n u r t u r e d " t h e b o d y . I : I f i t ' s t o o "bo", y o u c a n ' t e a t i t . I f I e a t t o o much ( o f "bo" t h i n g s ) , when t h e y ( n u r s e s ) come t o t e s t my u r i n e , t h e y s a y i t ' s t o o h i g h . . . I k e e p on t e s t i n g . I f my s u g a r g o e s up, I w o u l d t r y s o m e t h i n g e l s e . I w o u l d b o i l some " c o l d " t h i n g s t o c l e a r i t o u t , t h e n I w o u l d n ' t be a f r a i d . . . O n c e t h e "bo" t h i n g s a n d t h e " c o l d " t h i n g s a r e i n b a l a n c e , t h e n y o u w o u l d n ' t n e e d t o be a f r a i d . I hav e t o k e e p on t r y i n g . Some i n f o r m a n t s a l s o made u s e o f I n f o r m a t i o n t h e y l e a r n t f r o m p a s t e x p e r i e n c e s a n d u s e d s k i l l s l e a r n t p r e v i o u s l y t o h e l p t h e m manage t h e i r i l l n e s s . One I n f o r m a n t s t a t e d s h e g a i n e d much k n o w l e d g e f r o m h e r f a t h e r , who was a C h i n e s e h e r b a l i s t . B e s i d e s t a k i n g i n s u l i n a n d u s i n g some C h i n e s e f o l k m e d i c i n e , s h e a l s o made h e r own m e d i c i n e . I : I b e l i e v e i n t h e C h i n e s e d o c t o r , a n d I a l s o b e l i e v e i n t h e W e s t e r n d o c t o r . B u t I d o n ' t c a r r y o u t e v e r y t h i n g t h e y a s k . . . S o metimes I make some m e d i c i n e s m y s e l f t o a p p l y . I f I p u t th e m on t h e l e g , t h e n I c a n w a l k a n d n o t be a f r a i d o f p a i n . Then my bones w o u l d n o t h u r t . O t h e r i n f o r m a n t s c o n s i s t e n t l y u s e d " o r d i n a r y " a n d co m m o n l y - u s e d r e m e d i e s l i k e s o u p t o m a i n t a i n t h e i r h e a l t h . A t t h e same t i m e , t h e y t r i e d new me t h o d s o f t r e a t m e n t f r o m t i m e t o t i m e , h o p i n g t o d i s c o v e r s o m e t h i n g t h a t w o u l d be e f f e c t i v e i n t r e a t i n g 89 d i a b e t e s . I n t h i s s t a g e o f t h e d e c i s i o n - m a k i n g p r o c e s s , i n f o r m a n t s went t h r o u g h a p r o c e s s o f s y n t h e s i s . I n f o r m a t i o n t h e y c o n s i d e r e d " r i g h t " was t h e n p u t t o g e t h e r t o f o r m u l a t e i n f o r m a n t s ' own u n i q u e a nd c r e a t i v e t r e a t m e n t r e g i m e s . A c t i o n The l a s t s t e p i n h e a l t h d e c i s i o n - m a k i n g i s when i n f o r m a n t s c a r r i e d o u t t h e t r e a t m e n t r e g i m e s t h e y have c r e a t e d i n t o a c t i o n . I t I s i m p o r t a n t t o n o t e t h a t t h e h e a l t h d e c i s o n - m a k i n g m o d e l a s d e s c r i b e d r e p r e s e n t e d a n o n g o i n g a n d c y c l i c p r o c e s s . A"S i n f o r m a n t s a c c u m u l a t e d new i n f o r m a t i o n a n d had new e x p e r i e n c e s , h e a l t h d e c i s i o n s m i g h t be a l t e r e d a s new m e a n i n g s were d e r i v e d . As i n f o r m a n t s l i v e d wi'th d i a b e t e s , t h e y w e re f a c e d w i t h h e a l t h d e c i s i o n - m a k i n g on a c o n t i n u a l b a s i s i n o r d e r t o c o p e w i t h t h e i r i l l n e s s i n t h e c o n t e x t o f t h e i r d a i l y l i v e s . Summary T h i s c h a p t e r h a s p r e s e n t e d i n f o r m a n t s ' a c c o u n t s o f t h e i r e x p e r i e n c e s a s t h e y l i v e d w i t h d i a b e t e s . I n f o r m a n t s g a v e d e t a i l e d d e s c r i p t i o n s o f how t h e y v i e w e d d i a b e t e s , f r o m t h e i r own p e r s p e c t i v e s . T h e i r v i e w s o f d i a b e t e s e n c o m p a s s e d t h e i r d e f i n i t i o n s o f t h e c a u s e o f d i a b e t e s , t h e i r e x p l a n a t i o n s o f how d i a b e t e s w o r k e d , t h e i r v i e w s o f d i a b e t e s a s a n i l l n e s s , a n d t h e e f f e c t s d i a b e t e s h a s on t h e i r l i v e s . W i t h i n t h e c o n t e x t o f how I n f o r m a n t s v i e w e d d i a b e t e s , t h e y d e s c r i b e d how t h e y e x p e r i e n c e d a n d managed t h e i r i l l n e s s i n t h e c o n t e x t o f t h e i r d a i l y l i v e s . F r om i n f o r m a n t s ' d e s c r i p t i o n s , a c e n t r a l theme t h a t came o u t o f t h e d a t a was how t h e y made d e c i s i o n s I n e v e r y d a y l i f e t o s e e k h e l p a n d manage t h e i r i l l n e s s . As a r e s u l t , a d e c i s i o n - m a k i n g m o d e l b a s e d on i n f o r m a n t s ' d e s c r i p t i o n s was f o r m u l a t e d . 9 M a k i n g h e a l t h d e c i s i o n s t o manage d i a b e t e s was e s p e c i a l l y c h a l l e n g i n g t o i n f o r m a n t s a s t h e y b o r e p r i m a r y r e s p o n s i b i l i t y f o r t a k i n g c a r e o f t h e i r h e a l t h a n d f o r c a r r y i n g o u t t r e a t m e n t r e g i m e s . B a s e d on i n f o r m a n t s ' a c c o u n t s , t h e r e s e a r c h e r o u t l i n e d d i s t i n c t s t e p s t a k e n b y i n f o r m a n t s w i t h i n t h e d e c i s i o n - m a k i n g m o d e l . I n f o r m a n t s d e s c r i b e d t h a t t h e y f i r s t e v a l u a t e d t h e i r h e a l t h s t a t u s t o d e t e r m i n e w h e t h e r t h e y were " s i c k " o r " n o t s i c k " . When t h e y d e f i n e d t h e m s e l v e s a s " n o t s i c k " , i n f o r m a n t s o f t e n s o u g h t h e l p f r o m t h e p o p u l a r a n d f o l k d o m a i n s . B o t h d o m a i n s p r o v i d e d i n f o r m a t i o n on how t o m a i n t a i n h e a l t h a n d p r e v e n t s i c k n e s s e s . I n c o n t r a s t , when i n f o r m a n t s were " s i c k " , t h e y p r i m a r i l y c o n s u l t e d w i t h p e o p l e f r o m t h e p r o f e s s i o n a l d o m a i n , e x c e p t i n t h o s e i n s t a n c e s when i l l n e s s was p e r c e i v e d a c u l t u r e - s p e c i f i c . I n t h o s e i n s t a n c e s t h e n , i n f o r m a n t s s o u g h t h e l p f r o m f o l k d o c t o r s t o s u s t a i n t h e i r h e a l t h . A l t h o u g h i n f o r m a n t s s o u g h t a d v i c e r e g a r d i n g h e a l t h m a t t e r s f r o m t h e p r o f e s s i o n a l a n d f o l k d o m a i n s when t h e y were " s i c k " , t h e y s o u g h t s u p p o r t f r o m t h e p o p u l a r d o m a i n t o h e l p t h e m c o p e w i t h d a i l y management o f t h e i r i l l n e s s . I t was e s p e c i a l l y e v i d e n t f r o m i n f o r m a n t s ' a c c o u n t s t h a t t h e r e was a n a b s e n c e o f f a m i l y and p e e r s u p p o r t f o r t h e s e e l d e r l y I n f o r m a n t s w i t h i n t h e p o p u l a r d o m a i n . W i t h t h e l a c k o f s u p p o r t f r o m s i g n i f i c a n t o t h e r s , i n f o r m a n t s o f t e n r e s o r t e d i n s t e a d t o g o v e r n m e n t a l o r s o c i a l s e r v i c e a g e n c i e s f o r h e l p . Upon c o l l e c t i o n o f I n f o r m a t i o n f r o m t h e a v a i l a b l e s o u r c e s i n f o r m a n t s t h e n a n a l y s e d i n f o r m a t i o n b a s e d on s p e c i f i c a l l y d e f i n e d c r i t e r i a . I t was o b v i o u s h e r e t h a t i n f o r m a n t s ' own v a l u e s a n d j u d g e m e n t p l a y e d a t r e m e n d o u s r o l e i n t h e a n a l y s i s 91 p h a s e . A f t e r I n f o r m a t i o n was a n a l y s e d , i n f o r m a n t s t h e n c r e a t e d t h e i r own t r e a t m e n t r e g i m e s , u s i n g i n f o r m a t i o n t h e y had s e l e c t e d . A l a s t s t e p i n t h e d e c i s i o n - m a k i n g m o d e l was when i n f o r m a n t s p u t t h e i r t r e a t m e n t r e g i m e s I n t o a c t i o n . F r o m t h e a n a l y s i s o f i n f o r m a n t s ' a c c o u n t s i n t h i s c h a p t e r , e s s e n t i a l f a c t o r s f o r h e a l t h p r o f e s s i o n a l s t o c o n s i d e r i n w o r k i n g w i t h i n d i v i d u a l s w i t h d i a b e t e s h a v e b e e n i d e n t i f i e d . B u t more i m p o r t a n t , t h i s a n a l y s i s c a n h e l p h e a l t h p r o f e s s i o n a l s o b t a i n a n " i n s i d e " v i e w o f what l i v i n g w i t h d i a b e t e s was l i k e f o r i n f o r m a n t s . As a r e s u l t , i n s i g h t i n t o how i n f o r m a n t s e x p e r i e n c e a n d manage t h e i r i l l n e s s , a n d make h e a l t h d e c i s i o n s w i t h i n t h e i r w o r l d s , r i c h w i t h b a c k g r o u n d , e x p e r i e n c e s , a n d p e r s o n a l m e a n i n g s c a n be g a i n e d . 92 C h a p t e r 5 DISCUSSION T h i s r e s e a r c h s t u d y u s e d t h e p h e n o m e n o l o g i c a l a p p r o a c h t o d i s c o v e r how C h i n e s e e l d e r l y p e r s o n s e x p e r i e n c e d a n d managed d i a b e t e s . The a i m s o f t h i s s t u d y were d i r e c t e d t o w a r d s e x p l o r i n g what t h e C h i n e s e i n f o r m a n t s ' e x p e r i e n c e o f l i v i n g w i t h d i a b e t e s was l i k e , what l i v i n g w i t h d i a b e t e s meant t o C h i n e s e i n f o r m a n t s , a n d how t h e y managed t h e i r d i a b e t e s . B a s e d on t h e i n f o r m a n t s ' a c c o u n t s , a d e c i s i o n - m a k i n g m o d e l was f o r m u l a t e d . T h i s m o d e l was c o n s t r u c t e d f r o m t h e i n f o r m a n t s ' p e r s o n a l d e s c r i p t i o n s o f a d e c i s i o n - m a k i n g p r o c e s s t o s e e k h e l p and manage t h e i r d i a b e t e s . T h i s d e c i s i o n - m a k i n g p r o c e s s i n f l u e n c e d when i n f o r m a n t s s o u g h t h e l p , f r o m whom t h e y s o u g h t h e l p , how t h e y u s e d i n f o r m a t i o n f r o m h e a l t h c a r e r e s o u r c e s , a n d what t h e y d i d w i t h t h e I n f o r m a t i o n t h e y o b t a i n e d . T h i s c h a p t e r w i l l d i s c u s s t h e r e s u l t s o f t h i s s t u d y a s p r e s e n t e d i n C h a p t e r 4, and r e l a t e t h e r e s u l t s t o p e r t i n e n t l i t e r a t u r e a n d r e s e a r c h f i n d i n g s . Two A p p r o a c h e s t o D e c i s i o n - M a k i n g I t was t h e i n f o r m a n t s ' a c c o u n t s t h a t l e d t h e r e s e a r c h e r t o i n q u i r e i n t o t h e t o p i c o f d e c i s i o n - m a k i n g . L i t e r a t u r e r e v i e w showed a n a g e - o l d d i v i s i o n b e t w e e n two a p p r o a c h e s t o s t u d y i n g d e c i s i o n - m a k i n g : t h e s c i e n t i f i c , r a t i o n a l a p p r o a c h a n d t h e " r i v a l t y p e o f k n o w l e d g e " , known s o m e t i m e s a s common s e n s e , i n t u i t i o n , o r w i s d o m . Hammond, M c C l e l l a n d , a n d Mumpower ( 1 9 7 8 ) n o t e d t h a t R a p h a e l showed t h e s h a r p d i v i s i o n o f o p i n i o n i n h i s famous R e n a i s s a n c e p a i n t i n g , i n w h i c h he a r r a n g e d t h e p h i l o s o p h e r s f r o m r i g h t t o l e f t I n t e r m s o f w h e t h e r t h e y t o o k a q u a n t i t a t i v e , s c i e n t i f i c a p p r o a c h o r a n i n t u i t i v e a p p r o a c h t o 93 u n d e r s t a n d i n g n a t u r e , i n c l u d i n g human p e r c e p t i o n , j u d g e m e n t , and t h i n k i n g . E v e n b y t h e m i d n i n e t e e n t h c e n t u r y , t h e d e b a t e b e t w e e n t h e two a p p r o a c h e s o f d e c i s i o n - m a k i n g went o n . I s a a h B e r l i n ( c i t e d i n Hammond e t a l . , 1 9 78) d e s c r i b e d t h e s t a t e o f t h e s e " r i v a l t y p e s o f k n o w l e d g e " d u r i n g t h a t t i m e : The b i t t e r e s t c l a s h e s h a v e b e e n c o n c e r n e d w i t h t h e p r e c i s e l i n e w h i c h marks t h e f r o n t i e r b e t w e e n t h e i r t e r r i t o r i e s . T h o s e who made l a r g e c l a i m s f o r n o n - s c i e n t i f i c k n o w l e d g e h a v e b e e n a c c u s e d b y t h e i r a d v e r s a r i e s o f i r r a t i o n a l i s m a n d o b s c u r a n t i s m , o f t h e d e l i b e r a t e r e j e c t i o n , i n f a v o u r o f t h e e m o t i o n s o f b l i n d p r e j u d i c e , o f r e l i a b l e p u b l i c s t a n d a r d s o f a s c e r t a i n a b l e t r u t h ; a n d h a v e , i n t h e i r t u r n , c h a r g e d t h e i r o p p o n e n t s , t h e a m b i t i o u s c h a m p i o n s o f s c i e n c e , w i t h o u t m a k i n g a b s u r d c l a i m s , p r o m i s i n g t h e i m p o s s i b l e , i s s u i n g f a l s e p r o s p e c t u s e s , o f u n d e r t a k i n g t o e x p l a i n h i s t o r y o r t h e a r t s o r t h e s t a t e s o f t h e i n d i v i d u a l s o u l ( a n d t o c h a n g e them t o o ) when q u i t e p l a i n l y t h e y do n o t b e g i n t o u n d e r s t a n d what t h e y a r e . ( p . 2 ) The d e b a t e b e t w e e n r a t i o n a l a n d common s e n s e d e c i s i o n -m a k i n g i s e v i d e n t a s e a c h i s b a s e d on v e r y d i f f e r e n t p h i l o s o p h i c a l a s s u m p t i o n s a n d b e l i e f s . R a t i o n a l d e c i s i o n -m a k i n g a p p r o a c h e s s i t u a t i o n s i n a n o b j e c t i v e manner. T h i s t y p e o o f d e c i s i o n - m a k i n g f o c u s e s on a c h i e v i n g h i g h l y v a l u e d o u t c o m e s . R a t i o n a l c h o i c e t h e o r y , a t h e o r y w h i c h s u p p o r t s r a t i o n a l d e c i s i o n - m a k i n g , l i s t s t h e s t e p s t o s o l v e a d e c i s i o n - p r o b l e m a s e l i c i t i n g a l l f e a s i b l e a c t i o n s , d e c i d i n g what c o u r s e s o f a c t i o n s w i l l l e a d t o what o u t c o m e s , a n d r a n k i n g a l l f e a s i b l e a l t e r n a t i v e s ( E l s t e r , 1 9 8 6 ) . 94 Common s e n s e d e c i s i o n - m a k i n g , on t h e o t h e r h a n d , d o e s n o t f o l l o w t h e same g u i d e l i n e s s e t o u t b y r a t i o n a l d e c i s i o n - m a k e r s . B e i n g n e i t h e r a n a l y t i c n o r e m p i r i c a l l y v e r i f i a b l e , common s e n s e o r i n t u i t i o n i s u s u a l l y c o n s i d e r e d t o e x i s t i n t h e mi n d a l o n e a n d l a c k s e x t e r n a l r e a l i t y . T h i s t y p e o f d e c i s i o n - m a k i n g i s o f t e n r e l a t e d t o p a s t e x p e r i e n c e s a n d p e r s o n a l m e a n i n g s . As i t i s c o n s i d e r e d t o be b e y o n d c o m p r e h e n s i o n a nd r e a s o n , i t may be c o n s i d e r e d a s a n i r r a t i o n a l t h o u g h t p r o c e s s . And s i n c e i t i g n o r e s t h e f o r m a l p r i n c i p l e s o f l o g i c , I t has a l s o b e e n l a b e l l e d a s a n i l l o g i c a l t h o u g h t p r o c e s s ( T h o r n e , 1 9 8 2 ) . And y e t , i t r e p r e s e n t s a c r e a t i v e p r o c e s s t h a t a d h e r e s t o c e r t a i n c r i t e r i a t h a t makes s e n s e t o t h e i n d i v i d u a l . Numerous d e c i s i o n t h e o r i e s h a v e b e e n f o r m u l a t e d o v e r t h e y e a r s a n d s t i l l s u p p o r t t h e s h a r p d i v i s i o n b e t w e e n t h e r a t i o n a l , s c i e n t i f i c method o f d e c i s i o n - m a k i n g v e r s u s i n t u i t i v e , common s e n s e d e c i s i o n - m a k i n g . R a t i o n a l d e c i s i o n -m a k i n g , t h e r e f o r e , p l a c e s e m p h a s i s on m a k i n g t h e most l o g i c a l a n d a n a l y t i c d e c i s i o n t o a c h i e v e a h i g h l y v a l u e d o u t c o m e . C o n v e r s e l y , common s e n s e d e c i s i o n - m a k i n g a d h e r e s t o c e r t a i n c r i t e r i a t h a t make s e n s e t o t h e i n d i v i d u a l . B e c a u s e common s e n s e d e c i s i o n - m a k i n g d o e s n o t c o m p l y w i t h t h e p r i n c i p l e s o f l o g i c u s e d b y p e o p l e who s u p p o r t r a t i o n a l d e c i s i o n - m a k i n g , i t may be c o n s i d e r e d a s a n i l l o g i c a l p r o c e s s t h a t e x i s t s i n t h e min d o n l y . As h e a l t h p r a c t i t i o n e r s c o n t i n u e t o e n c o u n t e r c o m p l e x s i t u a t i o n s i n t h e i r p r o f e s s i o n a l p r a c t i c e , t h e y have a l s o a d o p t e d m e t h o d s o f d e c i s i o n - m a k i n g t o g u i d e t h e m i n m a k i n g e f f e c t i v e a n d r e s p o n s i b l e c h o i c e s . 95 M a k i n g H e a l t h D e c i s i o n s H e a l t h p r o f e s s i o n a l s h a v e o f t e n b a s e d t h e i r p r a c t i c e on s c i e n t i f i c r a t i o n a l i t y , a nd t h u s c o n f o r m e d t o m ethods o f r a t i o n a l d e c i s i o n - m a k i n g . C o n c u r r e n t w i t h t h e a c c u m u l a t i o n o f a d v a n c e d k n o w l e d g e and t e c h n o l o g y , t h e r e h a s b e e n a n i n c r e a s i n g e m p h a s i s on o b t a i n i n g o b j e c t i v e , e m p i r i c a l , and v e r i f i a b l e r e s u l t s . S c i e n t i f i c r a t i o n a l i t y p r e s u p p o s e s t h a t a l l phenomena r e l a t i n g t o h e a l t h and s i c k n e s s c a n be o b j e c t i v e l y o b s e r v e d and m e a s u r e d , o n c e t h e s e phenomena have b e e n o b s e r v e d , t h e y become c l i n i c a l " f a c t s " , t h e c a u s e a n d e f f e c t o f w h i c h must t h e n be d i s c o v e r e d . The t a s k o f t h e h e a l t h p r o f e s s i o n a l , t h e r e f o r e , i s t o d i s c o v e r t h e l o g i c a l c h a i n o f c a u s a l i n f l u e n c e s t h a t l e d up t o t h i s p a r t i c u l a r " f a c t " . T h e r e f o r e , s c i e n t i f i c r a t i o n a l i t y o f t e n a s s u m e s d i s e a s e s a r e u n i v e r s a l i n f o r m , p r o g r e s s , and c o n t e n t ( H e l m a n , 1 9 8 4 ) . T h e r e i s n o t o n l y a most r a t i o n a l and l o g i c a l e x p l a n a t i o n f o r p a t i e n t s ' c o n c e r n s , b u t t h e r e i s o f t e n a most r a t i o n a l a n d l o g i c a l way t o e f f e c t i v e l y t r e a t t h e d i s e a s e . Young ( 1 9 7 9 ) p o i n t e d o u t t h e i r o n y a s W e s t e r n h e a l t h p r o f e s s i o n a l s c l a i m t h a t W e s t e r n m e d i c i n e i s u n i q u e l y r a t i o n a l and e f f i c a c i o u s among t h e w o r l d ' s m e d i c a l s y s t e m s , when, t h e t r u t h i s t h a t p e o p l e e v e r y w h e r e a r e c a p a b l e o f b e h a v i n g r a t i o n a l l y . Y oung a l s o p o i n t e d o u t t h a t t h i s c l a i m i s o n l y p a r t l y r e l e v a n t , s i n c e e f f i c a c y m e a s u r e s o n l y one d i m e n s i o n o f m e d i c a l r a t i o n a l i t y , a nd i s o n l y one d e t e r m i n a n t o f a m e d i c a l s y s t e m ' s e f f e c t i v e n e s s . L a s t l y , t h e same c l a i m by W e s t e r n h e a l t h p r o f e s s i o n a l s i s o f t e n b e s i d e t h e p o i n t , s i n c e i t i s p r e d i c a t e d on s u c c e s s a t p r e v e n t i n g o r t r e a t i n g d i s e a s e , b u t o v e r l o o k t h e i s s u e o f how e f f e c t i v e l y p r a c t i c e s manage i l l n e s s . 96 M o r e o v e r , c r i t i q u e r s o f h e a l t h p r o f e s s i o n a l p r a c t i c e have v o i c e d t h e i r d i s c o n t e n t w i t h what has come t o be known a s t h e " b i o m e d i c a l m o d e l " . T h e y e x p r e s s e d c o n c e r n when p a t i e n t s ' own e x p l a n a t i o n s and a t t r i b u t i o n s a b o u t t h e i r i l l n e s s a r e c o n s i d e r e d s e c o n d a r y i n i m p o r t a n c e t o h e a l t h p r o f e s s i o n a l s a s h e a l t h p r o f e s s i o n a l s r e g a r d t h e i r e x p l a n a t i o n s a s more " r a t i o n a l " . I n a d d i t i o n , t h e b i o m e d i c a l m o d el may d i r e c t t h e i r a t t e n t i o n t o w a r d s a c c u r a t e d i a g n o s i s a n d t h e r a p y , w h i l e i g n o r i n g p e r s o n a l o r c u l t u r a l m e a n i n g s p a t i e n t s may a t t a c h t o t h e i r i l l n e s s ( B a r n a r d , 1 9 8 4 ) . W i t h i n t h e f i e l d o f n u r s i n g , t h e r e h a s b e e n a move t o w a r d s p r o m o t i n g t h e image o f n u r s e s a s " t h i n k i n g p r a c t i t i o n e r s " . N u r s e s p l a c e e m p h a s i s on t h e i m p o r t a n c e o f c r i t i c a l t h i n k i n g , w here d e s c r i p t i o n s a r e p r e c i s e , a n a l y s i s i s l o g i c a l , a nd s t a n d a r d s a n d c r i t e r i a e x i s t f o r e x p l a n a t i o n s p u t f o r t h . N u r s e s may, t h e r e f o r e , c o n s i d e r t h a t c r i t i c a l t h i n k i n g s e e k s d e e p e r e x p l a n a t i o n s t h a n " a p p e a r a n c e s " g r a s p e d b y common s e n s e ( G o r d o n , 1 9 8 7 ) . S p e c i f i c t o o l s h a v e b e e n u s e d b y n u r s e s t o d i r e c t t h e i r p r a c t i c e i n a s y s t e m a t i c and l o g i c a l way. The n u r s i n g p r o c e s s , a l o g i c a l a n d r a t i o n a l p r o b l e m - s o l v i n g a p p r o a c h , g i v e s n u r s e s d i r e c t i o n a s t o what p r a c t i t i o n e r s s h o u l d l o o k f o r , w h i c h o b s e r v a t i o n s a r e i m p o r t a n t and w h i c h a r e n o t , how d a t a a r e t o be e l i c i t e d , a n d how p r i o r i t i e s a r e t o be e s t a b l i s h e d ( M a r d i r o s , 1 9 8 7 ) . N u r s i n g m o d e l s , i n a d d i t i o n , a r e s y s t e m a t i c a l l y c o n s t r u c t e d , s c i e n t i f i c a l l y - b a s e d s e t s o f r e l a t e d c o n c e p t s w h i c h i d e n t i f y t h e e s s e n t i a l c o m p o n e n t s o f n u r s i n g p r a c t i c e , s u c h a s u n d e r l y i n g a s s u m p t i o n s , v a l u e s , and modes o f a d a p t a t i o n ( R i e h l and Roy, 1 9 8 0 ) . N u r s i n g m o d e l s 97 g u i d e n u r s i n g p r a c t i c e by s e t t i n g t h e r a p e u t i c g o a l s a n d s e l e c t i n g t r e a t m e n t m o d a l i t i e s i n r e s p o n s e t o p r o b l e m i d e n t i f i c a t i o n . H e nce, b o t h t h e n u r s i n g p r o c e s s a n d n u r s i n g m o d e l s a r e e x t r e m e l y e f f e c t i v e t o o l s t h a t g u i d e n u r s e s t o a d o p t a c o h e s i v e , r a t i o n a l , a n d s y s t e m a t i c a p p r o a c h t o p a t i e n t c a r e . N u r s e s s t i l l f u n c t i o n * h o w e v e r , w i t h i n e n v i r o n m e n t s t h a t c o m p a r t m e n t a l i z e p a t i e n t c a r e a n d s e e t h e e l i m i n a t i o n o f symptoms a s b e i n g synonymous w i t h good h e a l t h . As s t a t e d b y M a r d i r o s ( 1 9 8 7 ) , a m a j o r , u n d e n i a b l e f a c t o r i n f l u e n c i n g n u r s i n g i s t h e i n h e r e n t b i o l o g i c a l a n d t e c h n o l o g i c a l e t h n o c e n t r l s m common t o a l l h e a l t h s c i e n c e s . W i t h i n t h e s e c o n f i n e s , i t i s e a s y f o r n u r s e s t o s e t t h e r a p e u t i c g o a l s a n d s e l e c t t r e a t m e n t m o d a l i t i e s e f f e c t i v e l y , b u t i g n o r e t h a t c l i e n t s a r e t h e o n e s who l i v e w i t h a n d make d e c i s i o n s r e g a r d i n g t h e i r d a i l y c a r e i n t h e c o n t e x t o f t h e i r l i v e s . T h i s s t u d y g a v e a n a c c o u n t o f t h e i n f o r m a n t s ' d e c i s i o n -m a k i n g p r o c e s s , f r o m t h e i r p e r s p e c t i v e s . A l t h o u g h i n f o r m a n t s o f t e n d i d n o t c o n f o r m t o t h e s c i e n t i f i c a n d l o g i c a l m ethods o f d e c i s i o n - m a k i n g u s e d b y h e a l t h p r o f e s s i o n a l s , t h i s s t u d y showed t h a t i n f o r m a n t s ' d e c i s i o n - m a k i n g p a t h w a y s were f a r f r o m " i r r a t i o n a l " o r " i l l o g i c a l " . I n f a c t , i n f o r m a n t s c a r e f u l l y a n a l y z e d t h e c h o i c e s a v a i l a b l e t o t h e m a nd made d e c i s i o n s a d h e r i n g t o a n " i n n e r l o g i c " t h a t made s e n s e t o them a n d t h e i r s i t u a t i o n . H e a l t h p r o f e s s i o n a l s h a v e a l s o r e c o g n i z e d t h a t t h e r e a r e s i g n i f i c a n t f a c t o r s t h a t i n f l u e n c e c l i e n t d e c i s i o n - m a k i n g . P r o m p t e d b y a l a c k o f u n d e r s t a n d i n g o f how c l i e n t s make d e c i s i o n s a n d c h o o s e h e a l t h a c t i o n s i n r e s p o n s e t o t h e i r i l l n e s s , numerous m o d e l s h a v e b e e n f o r m u l a t e d b y r e s e a r c h e r s 98 w i t h i n t h e h e a l t h s c i e n c e s f i e l d t o e x p l a i n c l i e n t d e c i s i o n -m a k i n g . Suchman's m o d e l ( 1 9 6 5 ) f o c u s e d on s o c i a l p a t t e r n s o f i l l n e s s b e h a v i o u r t h a t i n f l u e n c e how c l i e n t s s e e k , f i n d , and c a r r y o u t m e d i c a l c a r e . H i s m o d e l i d e n t i f i e d t h e s e q u e n c e o f m e d i c a l e v e n t s a s f i v e t r a n s i t i o n a l s t a g e s : ( 1 ) symptom e x p e r i e n c e , ( 2 ) a s s u m p t i o n o f t h e s i c k r o l e , ( 3 ) m e d i c a l - c a r e c o n t a c t , ( 4 ) d e p e n d e n t - p a t i e n t r o l e , and (5) r e c o v e r y o r r e h a b i l i t a t i o n . A t e a c h s t a g e , t h e i n d i v i d u a l must make h e a l t h c a r e d e c i s i o n s and u n d e r t a k e h e a l t h r e l a t e d b e h a v i o u r s . A n d e r s e n ' s m o d e l ( 1 9 6 8 ) e x p l a i n e d t h a t c l i e n t s ' u s e o f h e a l t h s e r v i c e s i s d e p e n d e n t upon t h e p r e d i s p o s i t i o n o f t h e f a m i l y t o u s e s e r v i c e s . T h i s p r e d i s p o s i t i o n i s i n f l u e n c e d b y v a r i a b l e s s u c h a s a g e , s e x , e d u c a t i o n , h e a l t h b e l i e f s , a nd a t t i t u d e s . O t h e r f a c t o r s i n c l u d e i n d i v i d u a l s ' a b i l i t y t o s e c u r e s e r v i c e s , c o n s i d e r i n g f a c t o r s s u c h a s f a m i l y i ncome and a v a i l a b i l i t y o f c o m m u n i t y r e s o u r c e s . A l a s t f a c t o r i s t h e i n d i v i d u a l s ' need f o r s u c h s e r v i c e s , i n f l u e n c e d by t h e i r p e r c e p t i o n s o f i l l n e s s a nd t h e manner o f r e s p o n s e t o i l l n e s s . T w a d d l e ( 1 9 7 9 ) , i n h i s a t t e m p t t o e x p l a i n c l i e n t d e c i s i o n -m a k i n g , o u t l i n e d s e v e n l o g i c a l a nd n e c e s s a r y s t e p s c l i e n t s may t a k e i n t h e d e c i s i o n - m a k i n g p r o c e s s when t h e y e x p e r i e n c e s i c k n e s s . T h e s e s t e p s may i n c l u d e t h e c l i e n t s ' d e c i s i o n t h a t : ( 1 ) some c h a n g e f r o m n o r m a l h e a l t h has o c c u r r e d ; ( 2 ) t h e c h a n g e i s s i g n i f i c a n t ; ( 3) h e l p i s n e e d e d ; ( 4 ) a p a r t i c u l a r t y p e o f h e l p i s p r e f e r a b l e ; ( 5 ) a p a r t i c u l a r t r e a t m e n t a g e n t o r s e t t i n g i s most a p p r o p r i a t e , and (6) c e r t a i n t y p e s and d e g r e e s o f c o o p e r a t i o n w i t h t h e t r e a t m e n t a g e n t a r e a p p r o p r i a t e . The o utcome w i l l be t h a t t h e s i c k p e r s o n r e c o v e r s , becomes 99 impaired, or dies. These models were very helpful as they focused th e i r attention on c l i e n t decision-making and outlined steps people go through in seeking medical care. The authors also i d e n t i f i e d factors to explain why individuals did not use professional assistance. However, these authors took on a unique perspective as they concentrated on studying how c l i e n t s sought help from health professionals. In contrast to the perspectives taken by these models, the study presented here Identified who informants regarded as health care resources to help them manage the i r i l l n e s s . Informants consulted with people not only from the professional domain, but also people from the popular and folk domains. Therefore, people from the professional domain only acted as one source of information amongst many resources i d e n t i f i e d by informants. Moreover, t h i s study showed that each health care resource was perceived by Informants as serving d i s t i n c t purposes at d i f f e r e n t times. Thus, the choice of which resource to use depended on whether Informants f e l t the resource was appropriate for the state of health they were i n , and for the type of help they needed. Although the models outlined d i s t i n c t steps individuals take in th e i r pursuit of medical care, the study, in contrast, was based on informants' accounts, and gave a f u l l description of how d i f f e r e n t steps of the decision-making process were put together into a meaningful whole. In addition, readers may come to view i l l n e s s not as a discrete occurrence, but as a constant state experienced by informants as they cope with and manage i t In their d a i l y l i v e s . 100 L a s t l y , t h e s e m o d e l s o u t l i n e d a v e n u e s o f c a r e f o r c l i e n t s t o t a k e s o t h e y may a c h i e v e g o a l s c o n s i d e r e d t o be b e n e f i c i a l t o them. T h e s e i d e a s a r e more c o n g r u e n t w i t h t h e p r i o r i t i e s s e t b y h e a l t h p r o f e s s i o n a l s f o r t h e i r c l i e n t s . The f i n d i n g s o f t h i s s t u d y d i f f e r e d i n t h a t t h e y d e s c r i b e d how i n f o r m a n t s , i n f a c t , made d e c i s i o n s b a s e d on t h e i r own c r i t e r i a . T h e s e c r i t e r i a were u n i q u e t o t h e i n f o r m a n t s . T h e y s e r v e d a s g u i d e l i n e s t o h e l p i n f o r m a n t s make d e c i s i o n s c o n g r u e n t w i t h t h e i r p e r s o n a l v a l u e s a n d b e l i e f s y s t e m s , a n d t o c h o o s e h e a l t h b e h a v i o u r s t h a t c o u l d be accommodated i n t h e i r d a l l y l i v e s . B e c k e r a n d Malman ( 1 9 8 3 ) i d e n t i f i e d t h r e e e v a l u a t i v e p r o c e s s e s , o r c r i t e r i a , I n d i v i d u a l s u s e t o d e t e r m i n e w h e t h e r s u g g e s t i o n s make s e n s e a n d w h e t h e r r e c o m m e n d a t i o n s s h o u l d be f o l l o w e d . The f i r s t e v a l u a t i v e p r o c e s s i s p r o b l e m r e l i e f , w here i n d i v i d u a l s d e t e r m i n e w h e t h e r t r e a t m e n t s o r o t h e r i n t e r v e n t i o n s were e f f e c t i v e i n r e l i e v i n g o r c h a n g i n g symptoms. A s e c o n d e v a l u a t i v e p r o c e s s i s when i n d i v i d u a l s a n a l y z e w h e t h e r i n f o r m a t i o n p r o v i d e d i s c o n g r u e n t w i t h t h e i n d i v i d u a l ' s e x p l a n a t o r y m o d e l s o f t h e s i t u a t i o n , a n d t h e i r s o c i a l a n d c u l t u r a l v a l u e s . A t h i r d e v a l u a t i v e p r o c e s s i s when i n d i v i d u a l s a s s e s s w h e t h e r a t r u s t i n g r e l a t i o n s h i p i s e s t a b l i s h e d t h r o u g h o u t t h e h e a l t h - s e e k i n g p r o c e s s . The c r i t e r i a u s e d b y i n f o r m a n t s f r o m t h i s r e s e a r c h s t u d y were s i m i l a r i n some ways t o t h e e v a l u a t i v e p r o c e s s e s i d e n t i f i e d b y B e c k e r and Malman ( 1 9 8 3 ) . However, i n f o r m a t i o n b a s e d on i n f o r m a n t s * a c c o u n t s w e re r i c h a n d f i l l e d w i t h p e r s o n a l m e a n i n g s , a n d d e m o n s t r a t e d a h o l i s t i c v i e w o f how i n d i v i d u a l s make d e c i s i o n s t o c o p e w i t h t h e i r i l l n e s s on a d a l l y b a s i s i n t h e c o n t e x t o f t h e i r l i v e s . 101 K l e i n m a n ( 1 9 7 8 ) s t a t e d t h a t i l l n e s s i s c u l t u r a l l y s h a p e d i n t h e s e n s e t h a t how we p e r c e i v e , e x p e r i e n c e , and c o p e w i t h d i s e a s e i s b a s e d on o u r e x p l a n a t i o n s o f s i c k n e s s , e x p l a n a t i o n s s p e c i f i c t o t h e s o c i a l p o s i t i o n s we o c c u p y and s y s t e m s o f m e a n i n g we e m p l o y . The s t u d y p r e s e n t e d h e r e a l s o showed how m e a n i n g s o f t h e i l l n e s s were c u l t u r a l l y c o n s t r u c t e d and h a v e a d i r e c t i n f l u e n c e on h e a l t h d e c i s i o n - m a k i n g . F o r e x a m p l e , I n f o r m a n t s who b e l i e v e d t h e i r i l l n e s s was c a u s e d b y a n e x c e s s i v e " c o l d n e s s " s t r e s s e d t h e i m p o r t a n c e o f a v o i d i n g " c o l d " f o o d s s o t h e y m i g h t r e m a i n h e a l t h y , o t h e r i n f o r m a n t s j u d g e d w h e t h e r I n f o r m a t i o n was " r i g h t " f o r them b a s e d on w h e t h e r t h e y f e l t t h e i n f o r m a t i o n was " c o m p a t i b l e " w i t h them. A g a i n , t h e s e f i n d i n g s a d d r e s s e d t h e n e e d f o r h e a l t h p r o f e s s i o n a l s t o e x p l o r e c u l t u r a l f a c t o r s t h a t i n f l u e n c e t h e m e a n i n g s i n f o r m a n t s a s s i g n t o t h e i r i l l n e s s , a nd e x a m i n e how t h e s e m e a n i n g s i n f l u e n c e h e a l t h d e c i s i o n - m a k i n g E n g e l ( 1 9 8 0 ) s u p p o r t e d t h e n e e d t o r e l a t e p e o p l e ' s i l l n e s s t o t h e c o n t e x t i n w h i c h t h e y l i v e . He a s s e r t e d t h a t a p e r s o n ' s I l l n e s s i n f l u e n c e s a n d i s i n f l u e n c e d b y t h e s o c i a l n e t w o r k s o f w h i c h he o r s h e i s a p a r t . B e s i d e s a t t e n d i n g t o t h e t r e a t m e n t o f i l l n e s s , E n g e l a d v o c a t e d t h a t h e a l t h p r o f e s s i o n a l s s h o u l d be a w a r e o f t h e s o c i a l , f a m i l y , a n d e c o n o m i c p r o b l e m s t h a t c l i e n t s f a c e d u r i n g i l l n e s s a nd r e c o v e r y . The f i n d i n g s f r o m t h i s s t u d y s u p p o r t t h e p o i n t s made by E n g e l . As h e a l t h p r o f e s s i o n a l s work w i t h i n d i v i d u a l s w i t h d i a b e t e s , t h e y n e e d t o c o n s i d e r how i n d i v i d u a l s f i t t h e i r i l l n e s s i n t o t h e i r l i v e s . I t I s a l s o n e c e s s a r y f o r t h e m t o e x p l o r e t h e i m p a c t o f t h e i l l n e s s on a l l a s p e c t s o f t h e p e r s o n s ' l i v e s . To s u m m a r i z e , h e a l t h p r o f e s s i o n a l s h ave f r e q u e n t l y b a s e d t h e i r p r a c t i c e on s c i e n t i f i c r a t i o n a l i t y a n d a d h e r e d t o p r i n c i p l e s u s e d i n r a t i o n a l d e c i s i o n - m a k i n g , i n t h e a t t e m p t t o pr o m o t e t h e image o f n u r s e s a s " t h i n k i n g p r a c t i t i o n e r s " , n u r s e s h a v e p l a c e d e m p h a s i s on c r i t i c a l t h i n k i n g and u s e d s p e c i f i c t o o l s t o e f f e c t a n a n a l y t i c a n d a s y s t e m a t i c a p p r o a c h t o d e c i s i o n - m a k i n g . The f i n d i n g s f r o m t h i s s t u d y h a v e d e m o n s t r a t e d t h a t i n f o r m a n t s a d h e r e d t o a n i n n e r l o g i c t h a t made s e n s e t o them a n d t h e i r s i t u a t i o n a s t h e y made d e c i s i o n s r e g a r d i n g t h e i r h e a l t h . I n t h e s t u d y o f c l i n i c a l d e c i s i o n - m a k i n g , h e a l t h p r o f e s s i o n a l s have a l s o r e c o g n i z e d t h e need t o e x t e n d t h e i r e x p l o r a t i o n t o i n c l u d e c l i e n t d e c i s i o n - m a k i n g . D e c i s i o n - m a k i n g m o d e l s were f o r m u l a t e d t o e x p l a i n how c l i e n t s make d e c i s i o n s a s t h e y p u r s u e d p r o f e s s i o n a l c a r e . The m o d e l s p r o p o s e d b y Suchman (1965), A n d e r s e n (1968), and T w a d d l e (1979) a r e b a s e d upon t h e a s s u m p t i o n t h a t i n d i v i d u a l s p r i m a r i l y u s e h e a l t h p r o f e s s i o n a l s t o h e l p them manage t h e i r i l l n e s s . I n c o n t r a s t , t h e f i n d i n g s f r o m t h i s r e s e a r c h i d e n t i f i e d h e a l t h p r o f e s s i o n a l s a s o n l y one amongst many s o u r c e s o f i n f o r m a t i o n u s e d by i n f o r m a n t s . T h i s s t u d y a l s o showed t h a t p r i o r i t i e s o f c a r e s e t b y h e a l t h p r o f e s s i o n a l s may c o n f l i c t w i t h p r i o r i t i e s s e t b y i n d i v i d u a l s t h e m s e l v e s . I t i s c l e a r t h a t i n d i v i d u a l s * a n d p r o f e s s i o n a l s ' p r i o r i t i e s o f c a r e a r e i n f l u e n c e d b y t h e i r e x p l a n a t o r y m o d e l s o f i l l n e s s a n d t h e c u l t u r a l m e a n i n g s t h e y a s s i g n t o t h e i r I l l n e s s . I n t h e n e x t s e c t i o n , i s s u e s a n d d i s c r e p a n c i e s b e t w e e n c l i e n t s * a n d p r o f e s s i o n a l s ' e x p l a n a t o r y m o d e l s w i l l be d i s c u s s e d . 103 I s s u e s and D i s c r e p a n c i e s b e t w e e n C l i e n t s ' and H e a l t h P r o f e s s i o n a l s ' E x p l a n a t o r y M o d e l s Many a u t h o r s have a d d r e s s e d t h e d i s c r e p a n c i e s b e t w e e n h e a l t h p r o f e s s i o n a l s ' and c l i e n t s ' e x p l a n a t o r y m o d e l s o f i l l n e s s . C a s s e l l ( 1 9 7 9 ) d i s t i n g u i s h e d b e t w e e n d i s e a s e and i l l n e s s . He a r g u e d t h a t w h i l e p h y s i c i a n s a t t e m p t t o c u r e d i s e a s e s , c l i e n t s c u r e i l l n e s s e s t h a t a r e t h e c h a l l e n g e s t o t h e s e n s e o f i d e n t i t y a nd m e a n i n g t h a t o f t e n a c c o m p a n y p h y s i c a l d i s t r e s s . T h a t i s , i l l n e s s I s t h e c l i e n t s ' p e r s o n a l e x p e r i e n c e o f t h e d i s e a s e . Helman ( 1 9 8 4 ) e x p a n d e d on t h e i l l n e s s c o n c e p t . He g ave t h e f o l l o w i n g d e f i n i t i o n o f i l l n e s s : I l l n e s s i s t h e s u b j e c t i v e r e s p o n s e o f t h e p a t i e n t , and o f t h o s e a r o u n d h i m , t o h i s b e i n g u n w e l l ; p a r t i c u l a r l y how h e , a n d t h e y , i n t e r p r e t t h e o r i g i n a nd s i g n i f i c a n c e o f t h i s e v e n t ; how i t e f f e c t s h i s b e h a v i o u r , and h i s r e l a t i o n s h i p w i t h o t h e r p e o p l e ; and t h e v a r i o u s s t e p s he t a k e s t o r e m e d y t h e s i t u a t i o n , ( p p . 6 8 - 8 9 ) A c c o r d i n g t o Helman's ( 1 9 8 4 ) d e f i n i t i o n , i l l n e s s t h e r e f o r e n o t o n l y i n c l u d e s t h e p a t i e n t s ' e x p e r i e n c e s o f h e a l t h a n d d i s e a s e , b u t a l s o t h e m e a n i n g t h e y a s s i g n t o t h o s e e x p e r i e n c e s . I n c o n t r a s t t o how c l i e n t s v i e w t h e i r i l l n e s s e s , d i f f e r e n t a u t h o r s have p o i n t e d o u t t h a t h e a l t h p r o f e s s i o n a l s o f t e n v i e w I l l n e s s i n t e r m s o f b i o l o g i c a l p r o c e s s e s . As K l e i n m a n e t a l . ( 1 9 7 8 ) p u t i t , m e d i c a l h e a l t h p r o f e s s i o n a l s o f t e n assume t h a t " b i o l o g i c c o n c e r n s a r e more b a s i c , ' r e a l ' , c l i n i c a l l y s i g n i f i c a n t , and i n t e r e s t i n g t h a n p s y c h o l o g i c and s o c i o c u l t u r a l i s s u e s " ( p . 2 5 5 ) . Helman ( 1 9 8 4 ) s a i d t h a t W e s t e r n d o c t o r s o f t e n p l a c e i m p o r t a n c e on s e a r c h i n g f o r p h y s i o l o g i c " f a c t s " . 104 When c o n f r o n t e d w i t h a p a t i e n t ' s symptoms, t h e y t r y f i r s t o f a l l t o r e l a t e t h e s e t o some u n d e r l y i n g p h y s i c a l p r o c e s s . As Good a n d Good ( 1 9 8 1 ) s t a t e d , t h e t a s k o f t h e p h y s i c i a n , t h e n , " i s t o 'decode* a p a t i e n t ' s d i s c o u r s e b y r e l a t i n g symptoms t o t h e i r b i o l o g i c a l r e f e r e n t s i n o r d e r t o d i a g n o s e a d i s e a s e e n t i t y " ( p . 1 7 0 ) . The f i n d i n g s f r o m t h i s s t u d y i d e n t i f i e d t h e d i f f e r i n g e x p l a n a t o r y m o d e l s i n d i v i d u a l s a n d h e a l t h p r o f e s s i o n a l s p o s s e s s . The I n f o r m a n t s i n t h i s s t u d y c l e a r l y d e l i n e a t e d t h e i r own e x p l a n a t o r y m o d e l s o f i l l n e s s . T hey i d e n t i f i e d t h e i r own c a u s e s o f i l l n e s s w h i c h h e l p e d t h e m make s e n s e o f t h e i r i l l n e s s e x p e r i e n c e . As w e l l a s g i v i n g t h e i r own e x p l a n a t i o n s o f how t h e i r d i a b e t e s w o r k e d , i n f o r m a n t s d e s c r i b e d how t h e y p e r s o n a l l y e x p e r i e n c e d t h e i m p a c t o f d i a b e t e s on t h e i r l i v e s , a n d a l s o g a v e t h e i r own d e f i n i t i o n s o f h e a l t h and i l l n e s s a s t h e y d e s c r i b e d c o n c e p t s l i k e " s i c k " a nd " n o t s i c k " . The m e a n i n g s a s s i g n e d t o t h e s e t e r m s h e l p e d i n f o r m a n t s d e t e r m i n e when and who t o a s k f o r h e l p . I n a d d i t i o n , a s shown i n t h e f i n d i n g s , c r i t e r i a s e t b y i n f o r m a n t s s i g n i f i c a n t l y a f f e c t e d d e c i s i o n -m a k i n g . T h e s e c r i t e r i a i n f l u e n c e d how I n f o r m a n t s made h e a l t h d e c i s i o n s and c h o s e methods t o manage t h e i r i l l n e s s . The d a t a f r o m t h i s s t u d y , t h e r e f o r e , g a v e r i c h d e s c r i p t i o n s o f t h e e x p l a n a t o r y m o d e l s o f C h i n e s e e l d e r l y i n f o r m a n t s w i t h d i a b e t e s t h a t a d d t o o u r k n o w l e d g e o f t h e e x p e r i e n c e and management o f d i a b e t e s . The i n f o r m a n t s ' v i e w s a r e a l s o i m p o r t a n t b e c a u s e t h e y s h a p e d t h e i n t e r a c t i o n s t h e i n f o r m a n t s had w i t h h e a l t h p r o f e s s i o n a l s . F o r e x a m p l e , t h e i n f o r m a n t s v i e w e d t h a t p r o f e s s i o n a l d o c t o r s were t h e p e o p l e who d e a l t w i t h s i c k n e s s 105 e p i s o d e s a n d were e x p e r t s i n t h e t r e a t m e n t o f d i s e a s e . I n f o r m a n t s e m p h a s i z e d t h a t t h e y t r i e d t o a v o i d " t r o u b l i n g " t h e d o c t o r s u n l e s s t h e i r c o n d i t i o n s were s e r i o u s a n d / o r i f t h e y e x h i b i t e d o b v i o u s p h y s i c a l symptoms. A t t i m e s when t h e d o c t o r s were c o n s u l t e d , i n f o r m a n t s a l s o e m p h a s i z e d t h e i m p o r t a n c e o f c o m p l y i n g w i t h t h e s e e x p e r t s ' a d v i c e . C o m p l i a n c e h a s b e e n a much d i s c u s s e d t o p i c i n t h e h e a l t h c a r e f i e l d . B a r n a r d ( 1 9 8 4 ) i d e n t i f i e d p r o b l e m s t h a t may e x i s t i n t h e p h y s i c i a n - p a t i e n t r e l a t i o n s h i p when i t i s p r e s u m e d t h a t I t i s t h e p h y s i c i a n a n d n o t t h e p a t i e n t who u n d e r s t a n d s t h e b i o m e d i c a l m o d e l , a nd must a p p l y I t t o s o l v e t h e p a t i e n t ' s p r o b l e m . I n t h a t s e n s e , e x p e r t i s e , p o w e r , a n d authority i n t h e d o c t o r - p a t i e n t r e l a t i o n s h i p a r e i n h e r e n t l y a n d a p p r o p r i a t e l y u n e q u a l . The p h y s i c i a n d i a g n o s e s a nd recommends w h i l e t h e p a t i e n t a n s w e r s q u e s t i o n s a c c u r a t e l y a n d c o m p l i e s t o t h e p h y s i c i a n ' s commands. I n R.M. A n d e r s o n ' s ( 1 9 8 5 ) d i s c u s s i o n o f t h e p r o b l e m o f n o n - c o m p l i a n c e , he c i t e d t h e d i s c r e p a n c y b e t w e e n p a t i e n t s ' and h e a l t h p r o f e s s i o n a l s ' p e r c e p t i o n s o f t h e p a t i e n t s * s i c k n e s s e p i s o d e a s t h e m a j o r r e a s o n f o r n o n c o m p l i a n c e . He s t a t e d t h a t b o t h p a t i e n t s a n d h e a l t h p r o f e s s i o n a l s may d i f f e r i n t h e i r u n d e r s t a n d i n g o f t r e a t m e n t r e g i m e s . W h i l e many h e a l t h p r o f e s s i o n a l s s e e t h e t r e a t m e n t r e g i m e a s a s o l u t i o n , he s a i d t h a t p a t i e n t s may s e e i t a s a n o t h e r p a r t o f t h e p r o b l e m o f h a v i n g d i a b e t e s . He a s k e d r e a d e r s t o I m a g i n e a p a t i e n t b e i n g t o l d f o r t h e f i r s t t i m e s h e h a s Type I I d i a b e t e s . " M r s . J o n e s , " t h e d o c t o r s a i d , "You have a d u l t o n s e t o r Type I I d i a b e t e s . T h i s means y o u have t o o much s u g a r i n y o u r b l o o d a n d I t c o u l d l e a d t o s e r i o u s c o m p l i c a t i o n s . I 106 have p u t t o g e t h e r a c o m p r e h e n s i v e t r e a t m e n t p l a n f o r y o u and i f y o u f o l l o w i t f a i t h f u l l y y o u may be a b l e t o p r e v e n t t h e l o n g t e r m c o m p l i c a t i o n s o f d i a b e t e s , what y o u need t o do i s a l t e r y o u r e a t i n g h a b i t s b y g i v i n g up s w e e t s a n d s n a c k s a n d r e d u c e y o u r i n t a k e t o 1 2 0 0 c a l o r i e s p e r d a y u n t i l y o u l o s e 60 l b s . I h a v e a l s o d e s i g n e d a n e x e r c i s e p r o g r a m f o r y o u w h i c h i n v o l v e s w a l k i n g , s w i m m i n g , a n d u s i n g a n e x e r c i s e b i k e t o i n c r e a s e y o u r c a r d i o v a s c u l a r f i t n e s s . I n a d d i t i o n , y o u w i l l n eed t o s t i c k y o u r f i n g e r on a r e g u l a r b a s i s t o c h e c k y o u r b l o o d s u g a r l e v e l s a n d r e c o r d t h e r e s u l t s a n d i f t h i s d o e s n ' t w o r k , we w i l l s t a r t y o u on p i l l s o r i n s u l i n i n j e c t i o n s , ( p . 3 2 ) T h u s , t h e a u t h o r made t h e p o i n t t h a t many p a t i e n t s may v i e w t r e a t m e n t r e g i m e s a s more o f a p r o b l e m t h a n h a v i n g t h e d i s e a s e . As h e a l t h p r o f e s s i o n a l s f a i l t o u n d e r s t a n d i l l n e s s f r o m t h e p a t i e n t ' s p o i n t o f v i e w , t h e y w i l l c o n t i n u e t o p r e s c r i b e m e d i c a l t r e a t m e n t s t h a t p a t i e n t s may c o n s i d e r a s u n a c c e p t a b l e a n d i n a p p r o p r i a t e . R.M. A n d e r s o n ' s v i e w i s s u p p o r t e d b y t h e f i n d i n g s o f t h i s s t u d y . As i n f o r m a n t s a n a l y z e d I n f o r m a t i o n t h e y c o l l e c t e d f r o m h e a l t h c a r e r e s o u r c e s , t h e y s e t s p e c i f i c c r i t e r i a t o g u i d e them i n m a k i n g h e a l t h d e c i s i o n s t h a t may be accommodated i n t h e c o n t e x t o f t h e i r l i v e s . F o r e x a m p l e , one c r i t e r i o n s e t b y t h e i n f o r m a n t s was t h a t i n f o r m a t i o n s h o u l d n o t i n t e r f e r e s i g n i f i c a n t l y w i t h how t h e y l i v e d t h e i r d a i l y l i v e s . R.M. A n d e r s o n ( 1 9 8 5 ) f u r t h e r a r g u e d t h a t t h e m a j o r f a c t o r i n t h e p r o b l e m o f n o n - c o m p l i a n c e i s n o t t h e b e h a v i o u r o f t h e p a t i e n t , b u t r a t h e r t h e i n a p p r o p r i a t e e x p e c t a t i o n s o f h e a l t h p r o f e s s i o n a l s . He c o n t e n d e d t h a t what i s l a b e l l e d a s n o n -107 c o m p l i a n c e I s r e a l l y a c o m m u n i c a t i o n p r o b l e m b e t w e e n t h e h e a l t h p r o f e s s i o n a l a n d t h e p a t i e n t . He p o i n t e d o u t t h a t p r a c t i t i o n e r s a r e n o t t h e o n e s who t r e a t t h e p a t i e n t s ' d i s e a s e s . I n f a c t , p r a c t i t i o n e r s c o m m u n i c a t e t o p a t i e n t s a b o u t t h e i r d i s e a s e s w h i l e p a t i e n t s b e a r u l t i m a t e r e s p o n s i b i l i t y f o r t r e a t i n g t h e i r d i s e a s e . He a d d e d t h a t h e a l t h p r a c t i t i o n e r s make d e c i s i o n s r e g a r d i n g t r e a t m e n t b a s e d on t h e n e e d s o f t h e d i s e a s e r a t h e r t h a n t h e n e e d s o f t h e p a t i e n t . The p a t i e n t , on t h e o t h e r h a n d , makes d e c i s i o n s b a s e d on h i s o r h e r own p e r s o n a l n e e d s I n r e l a t i o n t o t h e d i s e a s e . The s t u d y p r e s e n t e d h e r e showed t h a t p r o b l e m s e x i s t e d when h e a l t h p r o f e s s i o n a l s p r e s c r i b e d t r e a t m e n t r e g i m e s a nd f a i l e d t o t a k e t h e i n f o r m a n t s ' e x p l a n a t o r y m o d e l s i n t o c o n s i d e r a t i o n . As a r e s u l t , i n f o r m a n t s m i g h t be l a b e l l e d a s n o n c o m p l i a n t w i t h p r e s c r i b e d t r e a t m e n t . The s t u d y a l s o p r o v i d e d a d d i t i o n a l d a t a a s i t d e s c r i b e d how i n f o r m a n t s d e a l t w i t h t h e p r e s s u r e s o f c o m p l i a n c e w i t h m e d i c a l r e g i m e n s . A l t h o u g h i n f o r m a n t s e x p r e s s e d t h a t i t was I m p o r t a n t t o a d h e r e t o t r e a t m e n t r e g i m e s , t h e y d e a l t w i t h t h e s i t u a t i o n d i f f e r e n t l y . I n a n a t t e m p t t o m a i n t a i n a good r e l a t i o n s h i p w i t h W e s t e r n p r o f e s s i o n a l d o c t o r s , a n d a t t h e same t i m e t o r e g a i n some c o n t r o l o v e r t h e i r s i t u a t i o n , many i n f o r m a n t s c h o s e t o c o n c e a l i n f o r m a t i o n f r o m t h e s e W e s t e r n d o c t o r s t o a v o i d b e i n g l a b e l l e d a s n o n - c o m p l i a n t . T h e r e f o r e , e v e n t h o u g h t h e l i t e r a t u r e r e v i e w e d a d d r e s s e d t h e p r o b l e m s o f c o m p l i a n c e , t h i s s t u d y went a s t e p f u r t h e r a n d showed how i n f o r m a n t s d e a l t w i t h t h e s e p r o b l e m s i n t h e i r i n t e r a c t i o n s w i t h W e s t e r n h e a l t h p r o f e s s i o n a l s . I n B a r n a r d ' s e x a m i n a t i o n o f n o n c o m p l i a n c e ( 1 9 8 4 ) , he 108 a t t r i b u t e d i t to the d i f f e r e n c e i n i n t e r p r e t i v e frameworks used by c l i e n t s and h e a l t h p r o f e s s i o n a l s . He c i t e d s e v e r a l s t u d i e s to I l l u s t r a t e these problems of "compliance". Roth (1962) observed t h a t some p e p t i c u l c e r p a t i e n t s , b e l i e v i n g t h a t stomach a c i d comes from food i t s e l f , avoided recommended between-meal snacks and a n a t a c i d s . Harwood (1984) e x p l a i n e d t h a t Puerto Rlcan p a t i e n t s r e f u s e d to take orange j u i c e to supplement t h e i r potassium i n t a k e because they b e l i e v e d t h a t oranges upset the d e s i r a b l e balance between "hot" and " c o l d " t h a t i s c e n t r a l t o Puerto Rlcan understandings of h e a l t h and d i s e a s e . T h i s study a l s o gave e x p l i c i t examples of how the informants' i n t e r p r e t i v e framework d i f f e r e d from the h e a l t h p r o f e s s i o n a l s ' . Informants i d e n t i f i e d numerous c u l t u r a l f a c t o r s t h a t a f f e c t e d how they viewed i l l n e s s and treatment regimes. Some Informants a t t r i b u t e d t h e i r cause of i l l n e s s t o be i n f l u e n c e d by "hot" and " c o l d " f a c t o r s t h a t were present i n t h e i r environment and t h e i r foods. Another i n d i v i d u a l e x p l a i n e d t h a t d i a b e t e s worked by the d i s p e r s a l of "poison" i n her body. Informants a l s o had unique i n t e r p r e t a t i o n s of the d i f f e r e n t types of treatment. Many people s t r e s s e d the importance of s e l e c t i n g types of treatments t h a t were "compatible" with themselves. Others who a t t r i b u t e d t h e i r i l l n e s s t o an excess of " c o l d " f a c t o r s experimented with foods t h a t had " c o l d " and "bo" q u a l i t i e s to maintain a balance of "hot" and " c o l d " f a c t o r s i n the body. In a d d i t i o n , as some informants b e l i e v e d t h a t an e x c e s s i v e intake of Western medicine might weaken the body, they took c a u t i o n t o take these 109 medicines in moderation. In conclusion, numerous authors have identified discrepancies between clients' and professionals' explanatory models of illness. It was evident from this study that informants had unique explanatory models of illness which guided decision-making. Informants also perceived that health professionals' view of illness was different than theirs. They perceived that health professionals primarily focused on the treatment of symptoms and disease. Many informants also stressed the importance of complying with treatment regimes prescribed by professional doctors. Many studies identified the problems of compliance when health professionals do not take the clients' point of view into consideration, and f a i l to understand and work through the clients' frame of reference. Besides supporting what the literature has identified, the study presented here also showed how informants dealt with the problems of compliance in their interactions with Western health professionals. Some authors have also suggested that these problems of compliance l i e in a difference in interpretive frameworks that guide client and health professional behaviours. The study gave explicit examples of how cultural factors influenced how informants interpreted their illness experience and treatment regimes. Hence, the issues and discrepancies between clients' and professionals' explanatory models again addressed the need for health professionals to view people's illness through the individuals' lenses. Only by understanding individuals' explanatory models and viewing people's illness through their frame of reference w i l l health professionals be able to work 110 cooperatively with individuals and come to appreciate the impact of the experience on people's lives. summary In this chapter, the findings of the research study have been discussed in relation to pertinent literature. Literature reviewed suggested that decision-making has been traditionally viewed from a s c i e n t i f i c and rational approach. This approach has placed emphasis on the identification of cause and effect of diseases, and physical processes. Although various theoretical models have been formulated in the health sciences f i e l d to explain health decision-making, they described the clients* decision-making process as interpreted by health professionals. In contrast, the study presented here gave rich and meaningful descriptions of how Informants experienced their illness, used health care resources, and managed decision-making in their daily lives. The study also identified problems that arose when there was a discrepancy between informants' and health professionals' explanatory models. The findings showed that informants' health decisions were based on personal meanings that must be understood in the personal, social, and cultural contexts of their lives. The findings also emphasized that understanding individuals' explanatory models forms the essential building block to establishing a collaborative and meaningful relationship with people. I l l ' Chapter 6 SUMMARY, CONCLUSIONS, AND IMPLICATIONS FOR NURSING Summary and Conclus i o n s T h i s study was designed t o ex p l o r e how Chinese e l d e r l y informants with d i a b e t e s experience and manage t h e i r i l l n e s s a t home. Diabetes m e l l i t u s was chosen t o be s t u d i e d as i t presents a unique c h a l l e n g e among c h r o n i c i l l n e s s e s . P a t i e n t s with d i a b e t e s assume primary r e s p o n s i b i l i t y f o r d a i l y c a r e . Moreover, proper therapy f o r d i a b e t e s r e q u i r e s c a r e f u l a t t e n t i o n t o some of the most b a s i c aspects of l i v i n g . Chinese informants were in t e r v i e w e d as the re s e a r c h e r p e r c e i v e d t h a t t h i s p o p u l a t i o n may h o l d d i f f e r e n t e x p l a n a t o r y models of i l l n e s s than other p o p u l a t i o n s and Western h e a l t h p r o f e s s i o n a l s . With the I n c r e a s i n g number of Chinese e l d e r l y i n Canada, i t i s c r i t i c a l f o r h e a l t h p r o f e s s i o n a l s to understand the e x p l a n a t o r y models of t h i s e t h n i c group i n order to work with them. The r e s e a r c h e r a l s o chose t o study Chinese informants' experience of l i v i n g with d i a b e t e s , from the informants' p e r s p e c t i v e . T h i s i s because the r e s e a r c h e r b e l i e v e d t h a t informants o f f e r an extremely r i c h source of data t h a t c o n t r i b u t e to understanding and i n s i g h t . L i t e r a t u r e was reviewed t o gi v e r e l e v a n t background i n f o r m a t i o n t o the study. As s t u d i e s of d i a b e t e s , from the c l i e n t s ' p e r s p e c t i v e , were s c a r c e , other s t u d i e s done on other types of i l l n e s s e s were used to provide i n s i g h t f o r t h i s study. T h i s study a l s o d i r e c t e d the r e s e a r c h e r t o ex p l o r e l i t e r a t u r e on the Chinese c u l t u r e , and to d i s c o v e r an e n r i c h i n g body of l i t e r a t u r e t h a t gave accounts of how c l i e n t s a s s i g n e d d i f f e r e n t meanings to t h e i r I l l n e s s e s . 112 The phenomenological perspective of q u a l i t a t i v e research was used as a framework to guide the methodology of t h i s study. This method was seen as appropriate as t h i s study aimed to describe and explain the human experience of l i v i n g with diabetes, in the complexity of i t s context. Informants were recruited v i a the Home Care d i v i s i o n of a health department in a western Canadian c i t y . Data were coll e c t e d through extensive interviews with nine Chinese informants who were diagnosed with late onset diabetes and were undergoing Insulin therapy at home. A l l of the informants were older adults and were f i r s t generation Chinese immigrants. A series of two to three interviews were conducted In the informants' homes. Interviews were conducted in Chinese and tape-recorded. These interviews were then translated Into English and transcribed. Data c o l l e c t i o n and analysis occurred simultaneously. Giorgi's phenomenological method (1975) was used to guide data analysis. Based on the informants' accounts, natural units were i d e n t i f i e d from the data according to meanings delineated. The researcher then t r i e d to state the central theme that dominated these natural units. F i n a l l y , the researcher synthesized and integrated the es s e n t i a l themes into the form of a f i n a l a n a l y t i c framework. As a r e s u l t , a decision-making model was formulated. This model was used by the researcher in an attempt to organize data that best represented how c l i e n t s experienced and managed diabetes. As informants related how they experienced and managed diabetes, they gave extensive descriptions of how they viewed diabetes. Informants provided detailed descriptions of their 113 e x p l a n a t o r y models of I l l n e s s and the impact of the i l l n e s s on t h e i r l i v e s . W i t h i n the context of how they viewed d i a b e t e s , informants d e s c r i b e d t h e i r decision-making process f o r s e e k i n g help and managing t h e i r i l l n e s s . F i v e d i s t i n c t steps were i d e n t i f i e d i n t h i s p r o c e s s . Informants s t a t e d t h a t they f i r s t e v a l u a t e d t h e i r h e a l t h s t a t u s t o determine whether they were " s i c k " or "not s i c k " . When they d e f i n e d themselves as "not s i c k " , they o f t e n c o n s u l t e d with people from the popular domain as t o how to prevent i l l n e s s and maintain h e a l t h . Conversely, when informants were " s i c k " , they sought help from the p r o f e s s i o n a l , f o l k , and popular domains. Informants c l e a r l y i d e n t i f i e d Western h e a l t h p r o f e s s i o n a l s as e xperts i n t r e a t i n g t h e i r d i s e a s e while f o l k d o c t o r s were p e r c e i v e d to have a good understanding of Chinese concepts of h e a l t h and c u l t u r a l l y - d e f i n e d i l l n e s s e s . When informants d e f i n e d themselves as " s i c k " , people from the popular domain were a d d i t i o n a l l y sought Sot support with d a i l y management of t h e i r i l l n e s s . Upon c o l l e c t i n g i n f o r m a t i o n from the d i f f e r e n t h e a l t h care r e s o u r c e s , informants then analyzed the i n f o r m a t i o n based on s p e c i f i c a l l y d e f i n e d c r i t e r i a . A f t e r i n f o r m a t i o n was analyzed, informants then c r e a t e d t h e i r own unique treatment regimes and put them i n t o a c t i o n . F i n d i n g s from the r e s e a r c h study p o i n t t o the need to ex p l o r e h e a l t h decision-making, from the c l i e n t s ' p e r s p e c t i v e . Only by understanding c l i e n t s ' e x p l a n a t o r y models and how they "make sense" of t h e i r c o n d i t i o n s and treatment regimes can h e a l t h p r o f e s s i o n a l s begin to work c o l l a b o r a t i v e l y with 114 c l i e n t s . F i n d i n g s a l s o r e v e a l e d how informants p e r c e i v e d h e a l t h care r e s o u r c e s , and when and from whom they sought h e l p . In a d d i t i o n , the f i n d i n g s addressed the i s s u e of compliance with medical regimes, from the informants' p e r s p e c t i v e . The r e s u l t s w i l l h e l p h e a l t h p r o f e s s i o n a l s r e e v a l u a t e the r o l e they p l a y as i n f o r m a t i o n p r o v i d e r s and r e a s s e s s how h e a l t h p r o f e s s i o n a l s may become more e f f e c t i v e r e source persons. I m p l i c a t i o n s f o r Nursing P r a c t i c e The f i n d i n g s of t h i s study suggest numerous I m p l i c a t i o n s f o r n u r s i n g p r a c t i c e . F i r s t , nurses must develop s k i l l s to e x p l o r e c l i e n t s ' e x p l a n a t o r y models and h e a l t h decision-making processes i f they are to provide r e s p o n s i b l e and e f f e c t i v e h e a l t h c a r e . The s p e c i f i c s k i l l s r e q u i r e d of nurses may Include keeping an open mind when r e l a t i n g with c l i e n t s , a t t e n t i v e l y l i s t e n i n g t o c l i e n t s , b e l i e v i n g t h a t the c l i e n t s ' i n f o r m a t i o n i s t r u e , r e s p e c t i n g c l i e n t s ' " i nner l o g i c " as to what "makes sense" and i s meaningful t o them, being s e n s i t i v e to c l i e n t s ' responses, and most important, showing warmth and empathy t o c l i e n t s so nurses may e s t a b l i s h a t r u l y unique bond with c l i e n t s as they r e l a t e with each other as genuine human beings. Besides e x p l o r i n g c l i e n t s ' e x p l a n a t o r y models and h e a l t h decision-making processes, i t Is a l s o c r u c i a l t h a t nurses examine t h e i r own e x p l a n a t o r y models and e v a l u a t e how they make d e c i s i o n s . I t i s recognized t h a t both c l i e n t s and nurses may have t h e i r own 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 to t r e a t i l l n e s s e s . Attempts t o understand each o t h e r ' s e x p l a n a t o r y models are necessary i n e s t a b l i s h i n g a c o o p e r a t i v e 115 working r e l a t i o n s h i p between the c l i e n t and the nurse. The r e s e a r c h e r advocates t h a t i n the c l i e n t - n u r s e r e l a t i o n s h i p , the focus should not be d i r e c t e d e n t i r e l y on how c l i e n t s make h e a l t h d e c i s i o n s . Nurses should a l s o not impose t h e i r own h e a l t h decision-making methods on c l i e n t s . 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 c l i e n t s where both p a r t i e s j o i n t l y r e c o n s t r u c t the c l i n i c a l s i t u a t i o n and n e g o t i a t e s t r a t e g i e s t h a t are a c c e p t a b l e t o each of them. Another I m p l i c a t i o n from the study i s t h a t nurses need to r e e v a l u a t e t h e i r r o l e s i n the p r o v i s i o n of h e a l t h c a r e . As they p l a c e emphasis on the use of d i a g n o s t i c technology and the treatment of d i s e a s e , c l i e n t s may i d e n t i f y them as r e s o u r c e s o n l y when c l i e n t s e x h i b i t s e r i o u s p h y s i c a l symptoms or when t h e i r t e s t r e s u l t s show measurements t h a t d e v i a t e from a normal range. In a d d i t i o n , with the i n c r e a s e d r e l i a n c e on o b t a i n i n g o b j e c t i v e , numerical v a l u e s of t e s t r e s u l t s , nurses must ask themselves i f they perform the t e s t s to b e n e f i t c l i e n t s or to o b t a i n i n c r e a s e d assessment d a t a . They must a l s o r e a s s e s s what r o l e they p l a y i n the p r e v e n t i o n of d i s e a s e . I f nurses, l i k e d o c t o r s , are p e r c e i v e d by c l i e n t s t o be s o l e l y treatment and d i s e a s e - o r i e n t e d , they should ask themselves whether t h i s r o l e i s a p p r o p r i a t e , and whether they perform the r o l e e f f e c t i v e l y and r e s p o n s i b l y . T h i s study showed t h a t 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 nurse's 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 h e a l t h promotion, nurses have important r o l e s t o p l a y i n a c t i n g as i n f o r m a t i o n r e s o u r c e s and c l i e n t advocates i n h e a l t h decision-making. Nurses who adopt these r o l e s as they f a c i l i t a t e decision-making 116 should take i n t o account c l i e n t s ' e x p l a n a t o r y models. By understanding c l i e n t s ' explanatory models, nurses w i l l be s e n s i t i v e to c l i e n t s ' needs, and help c l i e n t s l e a r n about c h o i c e s a v a i l a b l e t o them. Nurses w i l l a l s o be a b l e to provide i n f o r m a t i o n t h a t helps to i n c r e a s e c l i e n t s ' knowledge. In t h a t way, c l i e n t s may make informed d e c i s i o n s t h a t are not o n l y b e n e f i c i a l t o them but are congruent with t h e i r p e r s o n a l v a l u e s and b e l i e f s . The study a l s o showed t h a t c l i e n t s are r e s o u r c e f u l i n h e a l t h decision-making. Nurses should make use of c l i e n t s as r e s o u r c e s i n p l a n n i n g c a r e . T h e r e f o r e , nurses should keep an open mind and be a c c e p t i n g of i n n o v a t i v e ways c l i e n t s manage t h e i r i l l n e s s e f f e c t i v e l y . L a s t l y , informants have p o i n t e d out t h a t f o l k d o c t o r s were c o n s u l t e d as they have a deep understanding of Chinese concepts of h e a l t h and c u l t u r a l l y - d e f i n e d i l l n e s s e s . As nurses continue to work with c l i e n t s who belong to d i f f e r e n t e t h n i c groups, nurses should attempt t o f i n d out how f o l k d o c t o r s c o n t r i b u t e to the p r o v i s i o n of h e a l t h c a r e , and e x p l o r e o p p o r t u n i t i e s to use them as v a l u a b l e sources of i n f o r m a t i o n . C o l l a b o r a t i n g with f o l k h e a l e r s may a l s o be necessary as h e a l t h care resource persons j o i n t l y d i r e c t t h e i r care towards a c h i e v i n g optimal h e a l t h f o r c l i e n t s . I t i s apparent t h a t the f i n d i n g s of t h i s study support the viewpoint t h a t nurses have a s i g n i f i c a n t r o l e to p l a y In f a c i l i t a t i n g c l i e n t d e cision-making. T h i s study a l s o has important i m p l i c a t i o n s f o r n u r s i n g e d u c a t i o n as n u r s i n g students l e a r n t o a p p r e c i a t e the c o m p l e x i t i e s of h e a l t h d e c i s i o n - m a k i n g . 117 I m p l i c a t i o n s f o r Nursing Education As students are taught h e a l t h decision-making, an important i m p l i c a t i o n suggested by t h i s study i s t h a t they need t o understand the c l i e n t s ' e x p l a n a t o r y models. Nursing educators need t o emphasize t h a t h e a l t h decision-making cannot exclude the c l i e n t s ' views of t h e i r i l l n e s s . T h i s i s because, as the study i n d i c a t e s , i n d i v i d u a l s have t h e i r own unique e x p l a n a t i o n s of i l l n e s s . I n d i v i d u a l s ' h e a l t h d e c i s i o n s are made based on p e r s o n a l meanings t h a t are c o n s t r u c t e d w i t h i n the I n d i v i d u a l s ' p e r s o n a l , s o c i a l , and c u l t u r a l c o n t e x t s . Only by o b t a i n i n g people's p e r c e p t i o n s can nurses begin t o understand the i n d i v i d u a l s ' viewpoint and b u i l d 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 these persons. As students l e a r n how t o h e l p c l i e n t s make h e a l t h d e c i s i o n s , they a l s o need to examine t h e i r own e x p l a n a t o r y models. As the study i n d i c a t e d , problems a r i s e when both h e a l t h p r o f e s s i o n a l s and i n d i v i d u a l s f a i l to understand each other's e x p l a n a t o r y models. Problems become more complex when nurses f a i l to understand the e x p l a n a t o r y models t h a t guide t h e i r own thought processes and behaviour. J.M. Anderson (1987) suggested t h a t the s t r u c t u r e of edu c a t i o n must change to support an o r i e n t a t i o n which permits students i n the h e a l t h p r o f e s s i o n s t o be r e f l e x i v e - to q u e s t i o n the grounds of t h e i r p r a c t i c e - and t o understand the i d e o l o g i e s t h a t u n d e r l i e p r o f e s s i o n a l p r a c t i c e . The study presented here supports t h i s o r i e n t a t i o n . As n u r s i n g students begin to c l a r i f y t h e i r own valu e s and b e l i e f s , and q u e s t i o n the ways they t h i n k and behave, they w i l l o b t a i n an in-depth understanding of t h e i r e x p l a n a t o r y models. 118 As n u r s i n g students l e a r n to e n l i s t c l i e n t s ' e x p l a n a t o r y models, and c a r e f u l l y examine t h e i r own assumptions, v a l u e s , and b e l i e f s , they w i l l a l s o achieve an understanding of the complex s o c i a l and c u l t u r a l f a c t o r s t h a t impinge on any p a t i e n t - p r a c t i t i o n e r encounter, and a c q u i r e the a b i l i t y to i n c o r p o r a t e t h i s understanding i n t o c l i n i c a l p r a c t i c e (Anderson, 1987). As nurse educators p l a c e emphasis on h e a l t h d e c i s i o n -making and the e l i c i t i n g of c l i e n t s ' e x p l a n a t o r y models, much research-based knowledge i s r e q u i r e d t o help p r o f e s s i o n a l nurses g a i n a comprehensive understanding of c l i e n t h e a l t h a c t i o n s . In 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 f o r n u r s i n g r e s e a r c h w i l l be d i s c u s s e d . I m p l i c a t i o n s f o r Nursing Research F i n d i n g s from the study underscored the need to understand c l i e n t s ' e x p l a n a t o r y models t h a t guide h e a l t h d e c i s i o n s and h e a l t h a c t i o n s . Although nurses are f a m i l i a r with the v a l i d a t i o n p r o c e s s , g a i n i n g access t o c l i e n t s ' e x p l a n a t o r y models i s a complex s k i l l t h a t warrants f u r t h e r i n v e s t i g a t i o n . Research s t u d i e s may be designed t o study the c l i e n t - h e a l t h p r o f e s s i o n a l i n t e r a c t i o n , u t i l i z i n g and comparing the use of v a r i o u s i n t e r v i e w i n g techniques and l i s t e n i n g s k i l l s . The a r t of paying a t t e n t i o n , o b s e r v i n g , d e v e l o p i n g s e n s i t i v i t y t o c l i e n t s ' responses, and being p e r c e p t i v e to t h e i r needs a l s o need to be c u l t i v a t e d and promoted. In a d d i t i o n , v a r i o u s concepts l i k e " s i c k " and "not s i c k " have been I d e n t i f i e d i n t h i s study. These concepts hold promise i n enhancing the understanding of c l i e n t s ' e x p l a n a t o r y models. T h e r e f o r e , they need to be f u r t h e r e x p l o r e d and 119 r e f i n e d . As nurses search f o r the in-depth meanings of these concepts, they may g a i n tremendous i n s i g h t i n t o how i n d i v i d u a l s d e f i n e h e a l t h and i l l n e s s and i n t e r p r e t t h e i r i l l n e s s e x p e r i e n c e . Although t h i s study was conducted with Chinese e l d e r l y informants, more r e s e a r c h needs to be conducted with d i f f e r e n t c u l t u r a l groups t o e x p l o r e how c u l t u r a l f a c t o r s i n f l u e n c e c l i e n t d ecision-making. In a d d i t i o n , s t u d i e s t h a t compare how v a r i o u s c u l t u r a l groups make h e a l t h d e c i s i o n s w i l l h e l p r e s e a r c h e r s i d e n t i f y how people from d i f f e r e n t e t h n i c backgrounds p e r c e i v e and experience i l l n e s s . As o l d e r a d u l t s with l a t e onset d i a b e t e s (Type II) were s t u d i e d , s t u d i e s are needed to e x p l o r e how a younger p o p u l a t i o n with Type I d i a b e t e s makes h e a l t h d e c i s i o n s . In a d d i t i o n , more s t u d i e s done with other e l d e r l y informants w i l l a l l o w h e a l t h p r o f e s s i o n a l s to compare and c o n t r a s t d i f f e r e n t h e a l t h decision-making p a t t e r n s , and f u r t h e r a p p r e c i a t e d i f f e r e n t p e r s p e c t i v e s the e l d e r l y may take. C l i n i c a l decision-making and n u r s i n g diagnoses are e s s e n t i a l ideas t h a t have been taught t o n u r s i n g students to prepare them to enter the p r a c t i c e f i e l d . Although the development of r a t i o n a l and c r i t i c a l t h i n k i n g s k i l l s has been emphasized a l l a l o n g , nurses a l s o need to c a r e f u l l y examine and t e s t how they a c t u a l l y p r a c t i s e decision-making. Although t h e r e i s a ready consensus t h a t the a d o p t i o n of r a t i o n a l d e c i s i o n approaches, such as u s i n g the n u r s i n g process, guide nurses t o t h i n k e f f e c t i v e l y and s y s t e m a t i c a l l y , r e c e n t n u r s i n g l i t e r a t u r e i d e n t i f i e s a s c h o o l of thought t h a t c h a l l e n g e s t h i s t r a d i t i o n a l approach and i t s u n d e r l y i n g assumptions. 120 Benner (1983) acknowledged the " i n t u i t i v e g rasp" of the c r i t i c a l c a r e n u r s e a s e s s e n t i a l i n managing h i g h l y c o m p l e x c l i n i c a l s i t u a t i o n s . In a d d i t i o n , nurse r e s e a r c h e r s u s i n g q u a l i t a t i v e methods of i n q u i r y have a l s o proclaimed t h a t i n t u i t i o n i s an esteemed resource employed throughout the phases of the r e s e a r c h process (Rew and Barrow, 1987). With more r e s e a r c h on nurses* decision-making p r o c e s s e s , we may come to d i s c o v e r and develop an understanding of the I n t u i t i v e and s u b j e c t i v e q u a l i t i e s of nurses' t h i n k i n g t h a t has so long been n e g l e c t e d . As the f i n d i n g s have shown, although h e a l t h d e c i s i o n -making i s a f a m i l i a r concept i n the n u r s i n g arena, more s t u d i e s need t o be done t o e x p l o r e how c l i e n t s make d e c i s i o n s , how nurses make d e c i s i o n s , as w e l l as how both c l i e n t s and nurses may e f f e c t i v e l y make d e c i s i o n s t o g e t h e r . In a d d i t i o n , n u r s i n g r e s e a r c h needs to pursue a n u r s i n g versus a medical view of h e a l t h decision-making. In c o n c l u s i o n , w i t h changing h e a l t h t r e n d s , d e c i s i o n -making i s becoming an Important area to e x p l o r e . With the accumulation of advanced knowledge and the r i s e i n technology, h e a l t h p r o f e s s i o n a l s are faced with i n c r e a s i n g l y complex d e c i s i o n s t o make. John N a i s b i t t (1984), author of "Megatrends", i d e n t i f i e d t h a t i n d i v i d u a l s assume i n c r e a s e d r e s p o n s i b i l i t y f o r self-management and making t h e i r d e c i s i o n s , e s p e c i a l l y as they become d i s i l l u s i o n e d with h e a l t h care p r o v i d e r s ' i n a b i l i t y t o p r o v i d e them with proper care and treatment. T h i s study gave r i c h and meaningful d e s c r i p t i o n s of how Chinese e l d e r l y informants experienced and managed d i a b e t e s , from t h e i r p e r s p e c t i v e s . I t i s hoped t h a t with more 121 r e s e a r c h on d e c i s i o n - m a k i n g , h e a l t h p r o f e s s i o n a l s may come t o u n d e r s t a n d and a p p r e c i a t e t h e c o m p l e x i t i e s o f t h i s p r o c e s s , and work j o i n t l y w i t h c l i e n t s t o n e g o t i a t e c a r e t h a t i s c u l t u r a l l y s e n s i t i v e a n d a p p r o p r i a t e . B i b l i o g r a p h y 122 A m e r i c a n P s y c h o l o g i c a l A s s o c i a t i o n . ( 1 9 8 5 ) . P n h l i c a t i o n m a n u a l ot the A m e r i c a n P s y c h o l o g i c a l A s s o c l a t i o n (3rd e d . ) . Washington, D.C: Author. Andersen, R. (1968). A b e h a v i o r a l model of f a m i l i e s ' use of h e a l t h s e r v i c e s . 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Consensual norms r e g a r d i n g p a t i e n t involvement. S o c i a l Science and Medicine, 22 . (4) , 4 8 9 - 4 9 6 . W i l l i a m s , T.F. ( 1 9 8 1 ) . The need f o r d i a b e t e s e d u c a t i o n , i n G. S t e i n e r , and P.A. Lawrence (Eds.), Educating d i a b e t i c  p a t i e n t s (pp. 3 - 1 1 ) . NY: S p r i n g e r . Young, A. ( 1 9 7 9 ) . The dimensions of medical r a t i o n a l i t y : A p r o b l e m a t i c f o r the p s y c h o s o c i a l study of medicine. In P. Ahmed, & G. Coelho (Eds.), Toward a new d e f i n i t i o n of  h e a l t h : P s y c h o s o c i a l dimensions (pp.6 7 - 8 5 ) . New York: Plenum. Yu, L.C., & Wu, S.C. ( 1 9 8 5 ) . Unemployment and f a m i l y dynamics i n meeting the needs of Chinese e l d e r l y In the United S t a t e s . The G e r o n t o l o g i s t , 25_(5), 4 7 2 - 4 7 6 . APPENDICES 130 A p p e n d i x A I n f o r m a t i o n a n d C o n s e n t F o r m L i v i n g W i t h D i a b e t e s : The P e r s p e c t i v e o f t h e C h i n e s e E l d e r l y D e ar S i r / M a d a m , My name i s M a g d a l e n e L i n g L a i . I am a r e g i s t e r e d n u r s e and a s t u d e n t i n t h e g r a d u a t e p r o g r a m a t 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 S c h o o l o f N u r s i n g . I am p r e s e n t l y c o n d u c t i n g a s t u d y on C h i n e s e c l i e n t s w i t h d i a b e t e s . I b e l i e v e t h a t i n o r d e r t o work c o l l a b o r a t i v e l y w i t h c l i e n t s , n u r s e s must t r y t o u n d e r s t a n d f r o m c l i e n t s what i t i s l i k e f o r t h e m t o l i v e w i t h a n i l l n e s s . I am v e r y i n t e r e s t e d i n l e a r n i n g f r o m C h i n e s e p e r s o n s w i t h d i a b e t e s a b o u t t h e i r e x p e r i e n c e s w i t h t h e i r i l l n e s s . I a l s o b e l i e v e I h a v e a l o t t o l e a r n f r o m how t h e s e i n d i v i d u a l s manage t h e i r d i a b e t e s a t home. T h i s l e t t e r i s t o i n v i t e y o u t o p a r t i c i p a t e i n my s t u d y i f y o u s o w i s h . As p a r t o f my l e a r n i n g e x p e r i e n c e , I have r e q u e s t e d t o r e c r u i t c l i e n t s f o r t h i s s t u d y t h r o u g h t h e V a n c o u v e r H e a l t h D e p a r t m e n t Home C a r e d e p a r t m e n t . Y o u r Home C a r e n u r s e h a s a g r e e d t o c o n v e y t h i s i n f o r m a t i o n and g i v e a c o n s e n t f o r m t o y o u . I f y o u c o n s e n t t o p a r t i c i p a t e , a t y o u r c o n v e n i e n c e , I w i l l a r r a n g e t o v i s i t y o u a t y o u r home. I a n t i c i p a t e t o make two t o t h r e e one h o u r v i s i t s w i t h y o u . I w i l l a s k y o u q u e s t i o n s a b o u t y o u r e x p e r i e n c e w i t h d i a b e t e s , c h a n g e s y o u have made s i n c e y o u had d i a b e t e s , and ways y o u manage y o u r d i a b e t e s a t home. YOU ARE UNDER NO OBLIGATION TO P A R T I C I P A T E IN THIS STUDY, AND ARE FREE TO WITHDRAW FROM THE STUDY AT ANY TIME. YOUR WITHDRAWAL WILL IN NO WAY AFFECT YOUR TREATMENT AND ACCESS TO MEDICAL AND NURSING PROGRAM AND SERVICES. YOU MAY ALSO REFUSE TO ANSWER ANY QUESTIONS AND/OR STOP THE INTERVIEWS WHEN YOU FEEL NECESSARY. AGAIN, THIS WILL IN NO WAY JEOPARDIZE THE MEDICAL AND NURSING TREATMENT OR CARE YOU R E C E I V E . The I n t e r v i e w s w i l l be t a p e - r e c o r d e d . I f y o u r i n t e r v i e w i s c o n d u c t e d i n C h i n e s e , I w i l l t r a n s l a t e t h e t a p e s t o E n g l i s h and have them t r a n s c r i b e d . Y o u r name w i l l n o t be i d e n t i f i e d i n t h e t r a n s c r i b e d m a t e r i a l . O n l y m y s e l f , and my t h e s i s a d v i s o r s w i l l h ave a c c e s s t o t h e t a p e d m a t e r i a l s and t r a n s c r i p t s . You may r e q u e s t t o e r a s e a n y p a r t o f t h e t a p e d m a t e r i a l o r t r a n s c r i p t i f y o u f e e l i t n e c e s s a r y a t a n y t i m e . I may i n c l u d e e x c e r p t s o f t h e s t u d y when I w r i t e my r e p o r t , b u t a g a i n , no names w i l l be I d e n t i f i e d i n t h e r e p o r t . 132 A p p e n d i x B Sample T r i g g e r Q u e s t i o n s f o r R e s e a r c h I n t e r v i e w s The f o l l o w i n g q u e s t i o n s were u s e d t o g e n e r a t e i d e a s a n d c o n c e p t s i n t h e i n i t i a l i n t e r v i e w s w i t h c l i e n t s . P h r a s i n g a n d t e r m i n o l o g y o f q u e s t i o n s v a r i e d a s t h e r e s e a r c h e r i n t e r v i e w e d c l i e n t s . 1. How do y o u t h i n k y o u r d i a b e t e s s t a r t e d ? 2. What c h a n g e s h a v e y o u e x p e r i e n c e d s i n c e y o u had d i a b e t e s ? 3. How has d i a b e t e s a f f e c t e d y o u r f a m i l y l i f e ? 4. How has d i a b e t e s a f f e c t e d y o u r r e l a t i o n s h i p w i t h y o u r f a m i l y a n d y o u r f r i e n d s ? 5. What a r e some t h i n g s y o u do t o manage y o u r d i a b e t e s ? 6. What a r e some t h i n g s y o u a v o i d i n o r d e r t o t a k e c a r e o f y o u r d i a b e t e s ? 7. What k i n d s o f h e l p have y o u s o u g h t t o h e l p y o u manage y o u r d i a b e t e s ? 8. What have y o u b e e n t o l d a s t o how t o manage y o u r d i a b e t e s ? 9. What d i d y o u do w i t h t h e i n f o r m a t i o n y o u r e c e i v e d ? 10. Who do y o u go t o s e e k h e l p f r o m now? 1 1 . How do y o u f i n d t h e t r e a t m e n t y o u a r e r e c e i v i n g ? 12. What c a n h e a l t h p r o f e s s i o n a l s do t o h e l p y o u ? Appendix C nomographic Sheet F a m i l y Data Family Roles C l i e n t Spouse Others Others Others Others Others Sex Age Lang-ages Spoken B. P a t i e n t Data 1. P l a c e o£ B i r t h . 2 . Time i n Canada. E d u c a t i o n : Where. Le v e l of Education. 4. R e l i g i o n . 5. When Diabetes Was Diagnosed. 6. Health S e r v i c e s U t i l i z e d 7. L i v i n g Arrangements 8. F a m i l y Income 9. Occupation 10. Employment Status. 11. Cost: Amount Spent Each Month to Manage Diabetes 

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